Heather's Recovery Progress

Thank You

2008-12-19T19:51:00.000-08:00

Hello all of you who have been following our blog. I initially thought the blog was a weird idea but that it would really benefit our far flung family members who wanted to stay up on the family news. It has turned out to be much more than that and it has really been an amazing experience. Thank you all so very much for caring about our little family and our troubles. The love and generosity that have been shown to us throughout this difficult time have left us amazed and very grateful. The love, support, and prayers of such wonderful friends and family have helped us weather this storm of ours. Now that I am finally home, all I can say is Thank You!, and I love you, and I am so grateful to have a chance to live more of this wonderful life.

Love, Heather

Home Sweet Home!

2008-12-19T19:25:00.000-08:00

Heather is home!!!! It is truly incredible to have her back home again. It is hard to believe that she has not been here since September 30th. I think it was initially weird just to be out of the hospital and out of a hospital bed, but it was fantastic to drive into our driveway and come into the house. She just came into the living room, sat down on the couch, and cried (actually, we all cried). She has had a wonderful day just being at home. It makes a world of difference to all of us to be here together.

Thank you to all who made her homecoming so welcoming by shoveling snow, giving kind and thoughtful gifts, putting up signs and balloons, yelling welcomes from the street, bringing dinner, and just loving and praying for her. I wish I could have recorded all of her reactions throughout the day. It has been wonderful.

I won't be continuing the blog from here; however, Heather wants to write something in the next post. Thank you all for your prayers and support and for your interest in our lives over the past couple of months. It has been therapeutic for me to be able to write down what has gone on. Knowing that others are reading and are interested helped me to feel support through all of this. Thanks. It really has meant a lot. If you would like further updates or want to contact us, you are welcome to call (801-423-0906), visit, or email (Mark: mark_beecher@byu.edu; Heather: hz.beecher@yahoo.com).

I have included a few pictures from today.

Home Tomorrow!

2008-12-18T13:22:00.000-08:00

The results of the culture they took from Heather's abdominal wound came back showing no signs of infection (i.e., we could have gone home Wednesday). So, we are scheduled to head home tomorrow (Friday) morning! We are very excited!!!! Hopefully, nothing bad will occur before then, and things will go as planned.

Heather's back seems much better today. It is still quite sore, but it is no longer so inflamed and "angry." It's really nice to see it finally improving. The last few days she has been struggling with quite a bit of swelling in her legs and feet, from her knees down. It makes it painful for her to walk. She has been sitting in her wheelchair a lot so that her back doesn't need to have a dressing on it, but that makes the swelling worse. Last night we were able to elevate her legs and feet in her bed, and they seemed better today. I imagine that will be a bit of a battle for a while. We are just excited that she is well enough to finally go home.

Is It Infected or Not?

2008-12-16T21:02:00.000-08:00

Last night while I was with Heather one of the wound care nurses came in and looked at Heather's abdominal area (without taking the dressing off). She said that she did not think the wound was infected, but that the film the nurses had seen in the wound earlier that day was perfectly normal when you take the wound vac off. She said it was just "sluff." This was nice to hear and frustrating at the same time because that likely meant that Heather didn't need to take the antibiotic that had caused the allergic reaction.

The doctor came in today (Tuesday), and he and the nurses looked at the wound without the dressing on it. They all agreed that it was not infected but just sluff as the wound nurse had suspected last night. However, they still want to keep Heather in the hospital until Friday to see what the cultures show. We'll see.

Heather has been in considerable pain because of her back. She just can't seem to get it to heal. It appears today that she is having a reaction to the cream (bacitracin) they have been using to keep it moist and from getting infected. Bacitracin is an antibiotic, vaseline-like ointment. They told us today that many people begin to have a reaction to it after using it for an extended period. We have tried several other lotions, but they all really sting. They are going to begin using plain vaseline tomorrow. Hopefully that will calm the irritation and pain. She is really tired of having a hurting back.

Another Allergic Reaction

2008-12-15T14:49:00.000-08:00

The excitement never seems to cease in our family. Apparently Heather is allergic to the antibiotic they gave her. Within about an hour of giving Heather the IV antibiotic she began having intense itching and redness throughout her body, which progressed into breathing difficulties. They gave her benadryl and oxygen, and she seems to be doing fine. They just started her on another antibiotic. Hopefully, she won't be allergic to that one. Man, this is fun!

Homecoming Postponed

2008-12-15T11:54:00.000-08:00

Though it's not terribly surprising with how things have gone throughout this whole ordeal, we are sad to announce that Heather will not be going home on Wednesday as initially predicted. Yesterday and today Heather's abdominal wound was covered with a film of pus and she had a fever. Concerned about infection, they have ordered a culture on the pus and are giving her a broad spectrum antibiotic. The culture will take 2 to 3 days, so they want to wait to find out exactly what it is before sending Heather home. This means that she won't go home until probably Friday (I'm not holding my breath.). As I said, we are not surprised, but we are certainly disappointed and frustrated. I just want her home and healthy. They have promised (as if they really can) to have her home by Christmas.

Painful Back, but Doing Well

2008-12-14T14:17:00.000-08:00

Heather continues to improve daily. She is getting really excited about going home on Wednesday. It kind of seems like it will never happen.

Her back continues to be the main problem. It just won't heal. Yesterday and today she has spent the day in her wheelchair, sitting up without any dressing on her back, hoping that the wounds will dry out and heal. She also tried to sleep on her side last night so as not to put any pressure on her back. However, she still put a dressing on her back last night in case she needed to sleep on it. In the morning the dressing was stuck to her back just like other nights. It is miserable and painful for her. We don't know what to do to help it heal faster. Every dressing they put on it sticks to the wounds and then reopens the wounds when they remove the dressing. It is really frustrating.

She has been walking quite a bit, strolling back and forth down the halls several times each day. She gets stronger each day.

She's Got No Strings, and Now She's Free

2008-12-12T19:20:00.000-08:00

Heather is no longer attached to any machines or tubes! They took her wound vac off today! She now just has a dressing that covers her abdominal wound. It is a big step, indicating that she is healing really well.

The only thing still attached to her is a pic line (peripherally inserted central catheter, which is a form of IV line. They rarely use it, but it allows her to receive medications directly into her vein. They just screw syringes onto these short [about two inches long] tubes that go into her vein.).

She ran a bit of a fever last night, but seems to be doing better today. All in all she is still doing quite well.

The 17th is the Date!

2008-12-11T06:57:00.000-08:00

It's official! Barring some major, surprise downturn or mishap (which, based on our experiences thus far, we are not ruling out completely or taking lightly), Heather will be home on December 17th. She continues to do really well. They continue to work with her extensively in physical and occupational therapy (Today she will be baking something in their kitchen.). It is clear that she has a long way to go to build her strength back up, but we are very excited about her going home.

Lots of Walking

2008-12-09T08:04:00.000-08:00

Heather has been working hard in physical and occupational therapy. They had her down in their therapy area doing laps around the room. She was quite stiff last night after her workout, but in a good way. The occupational therapist worked with her on learning how to bathe and do other household tasks, in preparation for going home. She will definitely have to take it easy for quite a while, but she is getting stronger daily.

They decided not to take the wound vac off just yet. She will have it on at least for a few more days. I'm still not sure whether they will suture/staple the wound or just let it heal on its own. We'll see.

Good News Continues

2008-12-07T13:39:00.000-08:00

Heather continues to do really well. I'm amazed at how well she has done these past couple of days. She is so much stronger than she was even last week. She gets up and walks a couple of times per day. As mentioned in the last post, she has to get up to go to the bathroom now too. She still gets tired really easily, but has much more mobility and independence.

When they changed the dressing on her abominal wound yesterday, they said it looks so good that they will probably take the wound vac off tomorrow (Yay! The last tube will be gone!). They said that they will probably need to take her to a doctor that can either staple or stitch up the remaining wound. It is really healing quickly. Her other wounds are doing well too. Her back continues to be sensitive and painful, but it is healing. Her legs and the grafts are doing great! The cellulitis on her hips seems to be going away too. Heather's friend, Michelle, has come in several days in a row to put essential oils on her hips. This seems to have been quite effective.

Better Every Day

2008-12-05T13:14:00.000-08:00

Though she had a some trouble with nausea last night and ended up throwing up in her bed, Heather is doing quite well today. She has taken a shower two days in a row, which is really nice for her. She looks great and seems healthier and stronger every day. Though her back is still painful, it seems to be calming down. She has been walking more each day (with the help of a walker). She seems more like herself to me. They have begun talking about her discharge. They are tentatively aiming for December 17th, but she may be able to leave sooner. Heather is excited about this, but also quite nervous. She still feels weak and vulnerable, and it is scary to think about not having all the support she currently enjoys.

One more thing. Heather got her catheter out today. It is wonderful to see one more tube go. I think they take it out so that Heather has to get out of bed a couple of times per day.

Exercise

2008-12-04T06:52:00.000-08:00

Yesterday the physical therapists took Heather down to their rather extensive gym and gave Heather a work out and a half. They had her walk using parallel bars as supports. They had her walk 15-20 feet using a walker. She did all kinds of leg and arm exercises and spent time on a bicycle-like machine that required her to "pedal" with her arms. She says that she is quite stiff this morning, but she is ready for more today. They were able to transport her to and from the "gym" seated in a wheelchair, which they have not done up to this point. When they brought her back to her room they let her stay in her wheelchair for a while. She enjoyed being able to wheel around the room and explore the relative independence the wheelchair provided.

Her back continues to bother her because it tends to stick to whatever it contacts. It is hard to get it to heal when there is constantly pressure on it. Her other wounds continue to do well. She says that the leg pain she has comes from using the muscles she hasn't used in so long. The leg pain is, not surprisingly, worst where they had to remove tissue down to the muscle.

Appointment Results

2008-12-03T06:52:00.001-08:00

Sorry I didn't post yesterday. It was a busy day, and I didn't have my laptop with me. Heather had her first appointment back up at the UofU Burn Unit since she was discharged from the Burn Unit ICU. They loaded her on a stretcher and put her in a van designed for transporting medical patients to get her up to the UofU. I rode in the back with her. We left the Utah Valley Specialty Hospital at about 11:30am and didn't get back until after 4:30pm, so it was a long day of traveling for Heather.

The Burn Unit at the UofU Hospital has an outpatient clinic in which we were seen. They took down all of Heather's wound dressings. They were very pleased with how everything is healing. They said the grafts look great, and that they no longer require the extensive dressings she has had thus far. They gave her a fancy pair of spandex-like pants that she will wear for the next several months (She will have multiple pairs so that she can change them daily.). These pants put pressure on the grafts to keep the scars soft, smooth, and flat. She may still require some wound dressings on a few isolated spots on her legs, but other than that they just recommended the pants and lotion. They said she is ready for full range of motion in her legs. They spent considerable time rubbing off scabs (mostly where two pieces of grafted skin come together). They got a lot off and said the skin under the scabs looks great and healthy. They also found 4 or 5 staples that were left from when the grafts were initially put on. Heather was thrilled to have those pulled out.

They said her back looks really good and shouldn't require much dressing other than lotion and a soft t-shirt. This turned out to be a bit premature. Heather wore just a t-shirt last night, and her back oozed and stuck to it. This meant that when we pulled it off this morning it ripped the skin off a bit and reopened sores. She is very frustrated with her back and the pain it causes her. They were redressing the sore spots on her back when I left her this morning. It is close to being healed, but not close enough for either of us.

They said that her abdominal wound seems to be healing very well. She will continue to wear the wound vac for a week or two yet. The wound should close up on its own. It is truly amazing to see a wound that was over a foot long, over four inches wide, and over three inches deep just close up. It is now about a foot long, one to two inches wide at its widest, and about 1/4 of an inch deep.

Heather was exhausted after all her adventures yesterday. Through all that process she stood up four times (She also stood up with physical therapy right before she left.), took several steps (with significant help), and had all of her wounds worked over. She was emotionally spent too, as you can imagine. I think she is most frustrated that her back continues to hurt her so much.

I am finding that having Heather here in Utah County is more of a difficult balancing act than when she was in Salt Lake. It is harder to keep perspective and sane when I am working, seeing Heather multiple times per day, trying to maintain a relationship with Hannah, etc. It was easier when I could focus on work and Hannah for half of the week and on the hospital and Heather for the other half of the week. I look forward to the day when Heather can go home with great anticipation. My family has been a fantastic support to me. My sister, Tiauna, continues to be the primary care-taker for Hannah. Hannah and I have spent many nights at my parents home in Orem. This works out well because I can visit Heather right after work, take Hannah to my parents' home at around 6:00, put her to bed at 7:30, and then return to the hospital to be with Heather until it is time to go to bed. Hannah and I randomly head home and spend nights there too, but it is nice to have the option of using my parents' home and to have the support of family to help take care of Hannah.

Basic Healing, Appointment Tomorrow

2008-12-01T07:06:00.001-08:00

I didn't post anything yesterday because there really wasn't anything to report. Heather did well. Her dressing changes are, thankfully, uneventful these days. She has continued to stand up about twice per day. They talked about taking her down to their physical therapy/gym area today to practice walking using some parallel bars for support. We'll see if she feels up to it.

The hardest part for her (and for me) right now is just the drudgery of being in the hospital and not making progress as fast as she would like. It is extremely frustrating and discouraging for her to be away from family, and especially Hannah. It is really hard not to get down about missing all of Hannah's discoveries and excitements during this Christmas season.

Heather has an appointment back up at the UofU Hospital tomorrow. We are interested to see what the burn doctors have to say about how her wounds are progressing. We are unsure whether she will have to go by ambulance or if she can go in a wheelchair-equipped van. Either way it will likely be an adventure.

"A Basic Day"

2008-11-29T19:59:00.000-08:00

When I asked Heather what I should write today, she said that she "just had a basic day." I like those. In fact I vote for nothing but those from now on. She worked hard in physical therapy, standing several times and continuing to do exercises in bed. Other than that I have nothing new to report.

Nearly Independent Standing and an Allergic Reaction

2008-11-28T19:26:00.000-08:00

Today when physical therapy came in to help Heather try to stand, Heather stood up very quickly and almost without any help. It was really great to see. She took a few steps, sat back down, and then stood again. It was harder the second time, but she did significantly better than she has in past. It was great to see. Her dressing changes have been much, much better the past couple of days, and her wounds look better every day. I saw her abdominal wound for the first time in about a week, and it is looking much better. It is really pulling together, and the nurses rave about how healthy the tissue looks.

We had a bit of a scare this evening. You know, we can't have things go smoothly for too long. Her hematocrit was a little low, so they decided to give her some IV iron called Venofer. Approximately an hour after they started the drip Heather had a major reaction to it. She first felt what she calls "extreme chills" that came on within seconds. She began shaking from head to food and her teeth began chattering. Her jaw began tightening up, and then all the muscles in her body began tightening up. It became difficult for her breathe, as it felt like her throat and lungs were tightening up. The nurses were quite concerned (as was Heather). Her nurse initially gave her Benadryl. This didn't seem to have much effect, so she then gave her hydrocortisone. Within about five minutes, Heather felt markedly better, and within ten minutes even better. She now seems back to normal. Of course the nurse said this is a very rare reaction. I could have told you that because Heather had it. Apparently if there is a low probability, negative occurrence out there, Heather will have it.

Thanksgiving

2008-11-27T16:07:00.000-08:00

Heather wanted to share the following with you all:

Stronger Than Ever

2008-11-26T13:26:00.000-08:00

Heather is doing really well. I can't believe how much strength she has gained even in the last few days. She really seems like her old self. I got to the hospital an hour or so, and it is just so good to see her doing so well. Shortly after I got here the physical therapists came in. They helped Heather stand three times and take a few small steps with a walker. I love seeing her feel better and able to do more. She acts like a woman with a mission...to get out of here.

Her wound dressing changes have gone quite well. Yesterday, she was feeling more pain in her abdomen without the wound vac on, so they put it back on. Heather says it feels much better. Having the wound vac on will also make physical therapy better because Heather won't be worried about the wound popping open. Hooray for progress!!!!

A Day Without Major Incident

2008-11-25T20:08:00.000-08:00

Heather had a reasonably good day. She said that her daily dressing changes on her back and legs went well and that she felt the least amount of pain yet. She has been working with the physical therapists to build up her leg strength and maintain and build her upper body strength. I think the next big goal is to get her walking. Doing so would help many of her difficulties.

Dressing Change Okay Last Night

2008-11-25T06:52:00.001-08:00

I stopped in to see Heather on my way to work this morning. She seems to have a bit of a fever, but was sleeping soundly. She said that the dressing change wasn't as bad as she thought it would be. She said the dressing at the top of her back fell off by itself, which suggests that it is really healing up. She said the bottom of her back was still painful, but bearable.

Blunders Cause Pain

2008-11-24T19:21:00.000-08:00

Today the nurses changed the wound vac dressing in Heather's abdominal wound. You may recall that this is a foam that they cut to the size of the wound, cover it with tape, and attach a small vacuum hose to it for the purpose of sucking out discharge and improving healing. The problem was that they were supposed to change it on Saturday or at least yesterday because it is only supposed to be in for two days. However, there was some miscommunication, and it didn't happen until today. The problem with waiting too long, we found out today, is that the tissue begins growing into the foam which makes it very painful to remove.

I was at work today, so I missed all that excitement. Apparently it was incredibly painful, and they had to give her a lot of fast-acting, IV narcotics. On a positive note, the nurses said that the wound looks fantastic and is healing extremely well. They decided that because it looks so good it doesn't need the wound vac any more. They felt that it was wrong for the UofU to use the kind of wound vac foam (silver impregnated) they used on the last wound vac dressing. We didn't understand it either, as they had always used a black (instead of gray/silver) foam in the past. The nurses here said that the gray foam is more likely to cause the tissue to grow into it. They put a different dressing of some sort on it that no longer requires the vac.

Because they had to use so much of the IV narcotics to get the abdominal wound dressing out, they could not give Heather any more for her legs and back dressings. They had to wait 6 hours to give more IV narcotics, so they put the legs and back dressing changes off until tonight. When I just talked to Heather (8:30pm) they had not yet done it. The problem with that is that the most well-trained wound care nurses are there during the day and they had put the abdominal wound dressing change off so long (They had told Heather they would do the dressing change in the morning, but didn't get to it until afternoon.) that they were off shift by the time the 6 hours were over. That leaves the job to a less well-trained nurse for tonight. The long wait also increases the chances that the dressings on Heather's back will stick to her and be more painful coming off. I am not impressed. It is bad enough that Heather has to go through so much pain, but when it is largely avoidable it is maddening!

In other news, Heather used the toilet for the first time in over a month and a half today. She had to be wheeled on a chair to do it, but it is big progress just to feel well enough to sit up. She seems to be doing better each day, but I think she will be doing remarkably better when they stop torturing her.

NG Tube Out, and Much Rejoicing

2008-11-23T16:12:00.000-08:00

Heather reached another milestone of progress today. She was able to get her nasal-gastric or NG tube (the tube going in her nose, through her stomach, and into her small intestine that was used to give her nourishment and medications) out today. It was really starting to bother her, and she has been eating enough solid foods not to need it anymore. She is thrilled! She can breathe easier, there is no irritation at the back of her throat, and she no longer bumps into a tube any time she tries to bring anything to her mouth. It is wonderful to see her face (and kiss her lips) without anything in the way. Here's a picture:

Dressing Changes in a New Place

2008-11-22T18:59:00.000-08:00

Heather had a good night in her new home away from home. She woke up with some nausea and significant fears about her first dressing change here. She was particularly concerned about what they would do with the dressings on her back. When they looked at her back dressings yesterday it was clear that they were far too soggy to leave on. This was frightening because it meant that they would have to peal off the dressing that seemed to be quite stuck to her. After much preparation and waiting, our nurse did a great job of taking the old dressing off. It was still quite painful and not fun at all, but we feel the new dressing the nurse put on will work better for Heather and will help her heal faster than what she had on. She is clearly healing because her back is not as tender, though it still hurts her quite a bit.

Heather says that she is feeling a little sore tonight and that her mood seems to swing quite a bit. Her brother, John, flew in from South Carolina today to help take care of her through the first part of next week while I am at work. We're glad to see him and other family members who have been so supportive through this whole affair. My sister and her family brought Hannah to see Heather in her new digs. It is always nice to spend time together.

Settled In

2008-11-21T12:19:00.000-08:00

After a not so comfortable, but bearable, ride in an ambulance Heather has settled into her new home quite well. The Utah Valley Specialty Hospital is actually quite nice and were are very pleased to be here. It seems more peaceful, and the room is considerably larger. The facility has only been open for about two years, so everything is new and clean. Heather has a nice view of Mt. Timpanogos from her room. The nurses and staff seem very friendly and competent. The food is good. All-in-all we are very pleased and are glad to be here, closer to home.

Exercise and Dressing Change

2008-11-20T18:10:00.000-08:00

We are excited about our upcoming move. From its website, the Utah Valley Specialty Hospital looks nice (http://uvsh.ernesthealth.com/). We leave the UofU Hospital tomorrow morning at 9:30.

Heather had a pretty good day. Her back seems to be healing and is much less painful. Physical therapy came twice today and helped Heather stand up twice. It was not easy in terms of physical and emotional pain, but Heather did it. The first time they used a "tilt table," which is basically a bed that tilts up so that the person on it can get in a standing position without having to actually get their body up into that position. The second time she stood up herself with the help of two physical therapists. It was great to see her in a position other than on her back. Because she has been on her back so long it makes her quite dizzy and nauseated to sit or stand up. She did great considering what it felt like to do it.

The nurses changed the dressings on her legs and abdomen today. They are looking great. The grafts seem to be adhering well and they look red and alive. Her abdomen wound is significantly more closed up than it was when I saw it last week. She still tires quite easily and struggles with sluggish bowels and frequent nausea, but it is exciting to see her making these improvements.

Moving to Utah County!

2008-11-20T10:13:00.000-08:00

We just found out that Heather will be leaving the UofU Hospital tomorrow morning at 9:30am! She no longer needs to be in the ICU. She will be moving to the Utah Valley Specialty Hospital in Provo. It is a long-term acute care (LTAC) facility near the Riverwoods Shopping Center at the mouth of Provo Canyon. She will likely be there for a couple of weeks until she is strong enough to be admitted into the UofU's rehab center which is quite intense in terms of physical therapy. There is the possibility that she will go home from the LTAC, but it will depend on her and how quickly and effectively she gets stronger. So, she will get an ambulance ride tomorrow and will be closer to home. We are happy to see this progress.

Improvement Continues

2008-11-19T18:24:00.000-08:00

As I continue living my double life, I have once again left my work/home/Hannah self behind and have reverted back to my hospital/Heather self. It is great to see Heather. She looks significantly stronger and healthier to me. Part of her healthier look, that took me about an hour to figure out, is that she is no longer using any oxygen to help her breathe (She was using a nasal canula or tube that you often see oxygen users using.). Apparently she still has oxygen handy at night, but hasn't been using it much during the day for the past couple of days. Her voice is almost back to normal and her tracheostomy is nearly healed closed. She loves being able to talk without difficulty.

Today they removed about 100 staples that were holding down the edges of Heather's skin grafts on her legs. She said that this was quite painful, but nowhere near as painful as the back stuff. The doctors and nurses continue to say that the grafts look great.

Today the physical therapists came in to get Heather to stand up. She was concerned about this because she was sure the movement involved would cause the dressing to rip off of her back. The physical therapists insisted, so she tried. As she began to stand up the dressing ripped off her shoulder blades. Heather was not impressed. It is not as bad or as painful as it was several days ago, but it is still frustrating and painful. It is a tough balance to strike because the back will get better faster if the dressing isn't disturbed all the time; however, the longer she goes without standing up and walking the harder it will be for her to regain her strength.

Heather asked me to thank all of you for the abundant prayers, cards, phone calls, gifts, visits, and general kindnesses that have been heaped upon her. They mean a lot to her.

More Pain, But Doing Well

2008-11-18T19:15:00.000-08:00

I spoke with Heather, and she is currently doing quite well. She had a rough morning. Her day began with a dressing change in the "Tank Room" (This is a completely tiled room where they can give people a shower in bed.). In order to take her to the Tank Room they have to transfer her from her bed to a plastic covered metal bed (It has a thin mattress that is covered in plastic.) that can get wet. Apparently Heather's back was stuck to much of her bedding, so this transfer ripped the bedding off her back and was excruciating. The pain was intense even though they gave her several different narcotics and other pain killers prior to the transfer and during the entire dressing change. The dressing change and shower were also very painful. She said she wasn't sure she was going to make it through it.

They used a different kind of dressing for her back that is a kind of thin foam pad that is impregnated with silver and other antimicrobial chemicals that is supposed to work as well as the other dressing they used. She was worried this would burn and be painful like the previous one, but she said that it immediately felt really good. They secured this dressing with a mesh t-shirt of sorts that seems to hold it in place quite well. Heather was pleased with this arrangement.

The doctors and nurses looked at the skin grafts on her legs during the dressing change and said they look fantastic! We are thrilled with this news! If they continue to heal as they seem to be, she shouldn't need any further surgeries or major procedures. My guess is that they will soon want to get her out of the ICU and into inpatient rehab.

After her dressing change Heather did quite well throughout the day. Physical therapy came and tried to get her to sit up, but she was feeling quite exhausted. My guess is that in the next few days she will begin to feel like doing more and more to build up her strength. It is really nice to see her make this progress; however, there is part of me that won't let myself get too excited about it for fear that something terrible will happen again.

Wound Dressing Problems

2008-11-17T19:45:00.000-08:00

I'm back home with Hannah again, so I can only give you second-hand reports. Apparently this morning while taking Heather off a bedpan (a joyous experience in and of itself) the nurses and aids accidently grabbed the piece of wound dressing covering Heather's lower back (they originally used 7 or 8 pieces of the dressing to cover her back. Each piece is about 6" X 12") and pulled it off. This whole endeavor was quite painful, but what made it worse is that she is now without a wound dressing on that lower portion of her back. In addition, one of the pieces on her shoulder slid up, so they took that one off too.

This means that Heather will need to have a new dressings put on to cover the bare parts of her back. The thought of having to go through that burning pain again is overwhelming to her. They won't do anything until tomorrow when she has a dressing change on her legs. They are thinking of trying a different kind of dressing, hoping it won't burn like the last one did. However, it is also lined with silver and will probably burn as well. The other problem is that the part of her back that is not covered now may be stuck to her bedding. We are hoping that, having had a few days to heal, the nerve endings won't be quite so sensitive and that she won't experience anywhere near the same kind of pain she did yesterday.

Other than that fun piece of news, she said that she is doing pretty well. She is still quite tired much of the time. In addition, with all of the narcotics she is taking, her bowels remain quite sluggish. The constipation makes her feel nauseated and uncomfortable.

Grafts Look Good, Trach Tube Out

2008-11-16T10:41:00.000-08:00

Heather had her wound dressing change this morning at about 8:00am. The doctor said that the grafts on her legs look really good and seem to be progressing as he would hope and expect them to. The wound on her abdomen looks really good too. It has closed in significantly and seems to be healing really well. The doctor also said that she could get her tracheostomy tube out. He and ne of the residents came in a couple of hours after the dressing change and took it out. They put a piece of gauze over the hole and taped over it to seal it. It bubbles up a bit every time she breathes or tries to talk. They said the hole should seal closed on its own in anywhere from a few hours to two days.

After they finished dressing her legs the pain began. They had to change the dressing on her back where the skin was taken for the grafts. This is definitely the source of most of her pain. Despite the nurses best efforts to give her plenty of pain medications to prepare her for this dressing change, it was excruciating for her. I got to see the donor sites for the first time, and they are much larger than I had thought. It appears that they took four strips of skin off her back, each approximately 3"-4" wide and 12"-18" long. So, basically the entire surface of her back is one large sore. They only went deep enough to take the top layers of skin. So, it is not a bloody, red open wound, but rather it looks like a bad scrape all down her back. They had to wash it all and peal off the old dressing. This was quite painful. The most painful part of the dressing change involved an area low on her back where the original dressing has shifted up. This left the lower part of her wound exposed, and the diaper they have her on stuck to the wound. It was terribly painful to pull this off of her skin.

The new dressing they put on seemed to cause more pain than taking the old one off did. It is a special dressing lined with silver that has antimicrobial properties. This dressing can stay on until the wound is healed. This is a real blessing because it means that she won't have to go through daily wound dressing changes on her back that would be necessary otherwise. However, for a small percentage of people this dressing burns for 10-30 minutes when it is first put on. Of course, Heather falls in that small percentage. She was in significant, almost unbearable pain for about an hour after the dressing change and then has gradually been able to experience some relief in the time since. They gave her tons of different pain killers, trying to help her feel better, but nothing seemed to work at first. She seems much more comfortable now, and is sleeping.

We hope she won't have to go through any of that again. I hate to see her hurt. I'm excited about her progress though. Thank you for your prayers in her behalf.

No New Is Good News

2008-11-15T15:44:00.000-08:00

I have very little to report today, and I consider that a very good thing. My greatest desire is that this blog will become extremely boring because all I will have to say is that she is doing great.

With the exception of some sluggishness in the bowel department, Heather has continued to do quite well. We are looking forward to tomorrow's dressing change, hoping that the grafts on her legs will look good. We really hope that they will be adhering nicely and that they will look healthy enough that she won't need to have any more grafts done. We would also really like to get her tracheostomy tube out. I will let you know what happens tomorrow.

A Good Day

2008-11-14T19:27:00.000-08:00

Heather really did well today. She had little if any pain, was nausea free, and seemed to be more herself than I have seen in several days. We had a couple of visitors, including Hannah, which was nice. Heather was able to take several long and peaceful naps, and generally seems rejuvenated. She was even able to watch a full movie without falling asleep (She hasn't been able to do that since she got to the hospital.).

It is really nice to be able to hope that we may be through all the surgeries and scary parts of this ordeal (though it is still very possible that Heather will need additional grafting or other procedures). It feels like the light at the end of the tunnel is getting bigger and looking more like a reality. Maybe it is a foolish or false hope, but it still feels good to us.

Doing Great This Morning.

2008-11-14T08:57:00.000-08:00

Heather is doing really well this morning. She says that she is in no pain, has no nausea, and has an appetite. She also says that she doesn't remember anything that happened during or after the surgery last night, which is a real blessing. It's wonderful to see her feeling so much better than she has for the past couple of days.

There are three main doctors that work on rotation here in the burn unit (Dr. Saffle, Dr. Morris, and Dr. Cochran - I'm not sure of the spelling of those names). Dr. Morris has been on since we got here, but he is rotating off today. Dr. Saffle is covering the weekend, and I believe Dr. Cochran will be on for several weeks starting on Monday. Dr. Saffle started the Burn Unit between 20 and 30 years ago, and is a revered figure in the field of burn care. He came in to see Heather this morning and said that if her wounds look good on Sunday and it appears that she won't need any further surgery, they will take her tracheostomy tube out on Sunday. That would be fantastic!

Late Surgery and Autografts

2008-11-13T19:46:00.000-08:00

Heather didn't go into surgery until 4:45pm. It was a rather miserable day of anxious anticipation and nausea. She was quite nervous about this surgery. She was specifically worried about the pain of the donor sites and having to go back on the ventilator (Last time she was on the ventilator she felt like she couldn't breathe, and it was very distressing to her. Imagine how anxiety-provoking it would be if you had to breathe through a soda straw, and you will have an idea of why she was worried about it.).

She was in surgery for almost two hours. When she got out, she was in terrible pain. It took the doctors and nurses 30-45 minutes to finally get the pain under control (This was not for lack of effort. They were trying everything they could to make her comfortable.). During that time she was rocking her head back and forth and moaning in pain. I think it was probably the worst pain she has experienced in her whole time in the hospital. It was very distressing to all involved. I hate seeing her suffer like that. She is much calmer and more comfortable now. She is in and out of sleep and seems to have the pain under control.

Dr. Morris said that the surgery went well. They took about 180 square centimeters of skin from her back in four long strips (I got the idea that they were about two inches wide and between 8 and 12 inches long, but I could be wrong.). They were able to cover all of her leg wounds, stapling and suturing the skin on. It is her back that is causing most of her pain now. The leg wounds don't hurt much because the wounds are deep enough that most of the nerve endings are gone. However, on her back the wounds are just deep enough to hit all of the nerve endings.

Dr. Morris said that the grafts do not always take, and there is a 5-15% chance that she will have to go back in for more grafts. He is still concerned about the cellulitis in both of her hips. He said that it is not getting worse, but it is not getting better as quickly as he would like. He said that still thinks that it will get better on its own (with the help of antibiotics), but that the worst case scenario is that they will have to make a deep cut on each hip and attach a wound vac to draw the infection out.

He said that they will try not to move Heather much at all for the next three days. On Sunday they will do a full dressing change and see how the grafts are doing. Next week they will begin getting her to move and trying to stand up again. He said that if her breathing continues to go well, they will likely be able to take her tracheostomy tube out and let the hole (or stoma) close. That would be exciting!

He cannot predict exactly how quickly she will heal, but his best guess, barring the need for more grafts, is that she will be here on the burn unit until about Thanksgiving. After that she will need to spend a couple of weeks in an inpatient rehabilitation unit. He said that he feels that she will be able to be home by Christmas. I hope and pray that will be the case.

I asked Dr. Morris about scarring. He said that she will definitely have significant scarring on her legs and some scarring on her back. He said that everyone scars differently. The scars on her legs will most certainly be extensive and quite visible. The ones on her back may be very faint and hard to see, or they may have a rougher texture than the surrounding skin and be quite visible. He said that scar tissue contracts significantly. So, it will pull the flesh surrounding the wounds together, which will lessen some of the indentations on her legs.

We hope that we have just gone over the last major hurdle to Heather's recovery. We hope that the grafts do well, and that she doesn't have to go back for more.

Nausea

2008-11-12T19:10:00.000-08:00

Heather has had a difficult day. She woke up feeling some nausea that seemed to worsen as the day went on. This makes it really hard for her to stay up-beat. She did some physical therapy where they put her on a board that helps her stand up. As they were standing her up she vomited and has continued to feel nauseated since. There are many possible reasons for the nausea: she is eating fattier foods than she has eaten in a month; the narcotics (which slow down bowel functioning) she is taking and new foods she is eating continue to disrupt her bowels; she has skin from another person on her legs that her body may already be fighting against; etc.

Dr. Morris came in and said that she will be going into surgery tomorrow afternoon to get autografts (grafts using her own skin, taken from her back and sides). He told her that the donor sites (i.e., the spots from which they will take the skin for the grafts) will be quite painful for two days and moderately painful for 10 days. She was already anxious about this autograft surgery, but hearing that was quite distressing to her. She said that she doesn't feel like she is up to dealing with the pain of the autografts and the nausea at the same time (not to mention that she is just tired of being in the hospital and having this ordeal go on so long). She seems a little overwhelmed tonight. As always, your prayers on her behalf mean a lot to us.

Staples Out and More Standing

2008-11-12T06:39:00.000-08:00

Heather had a wound dressing change yesterday. I wasn't there so I don't know exactly how it went, but apparently they felt her wounds and the homografts looked good. They removed the staples that held the homografts in place. She said that it did not hurt this time, which is nice. She has been having really good days lately. She was able to stand up for about 10 seconds yesterday (with support) and has been increasing her strength daily. She spent considerable time with her tracheostomy button in and has been eating more solid food. I can't wait to see her tonight after work. They have her scheduled for surgery tomorrow, but it is very unlikely that that will happen. It is my understanding that they want to give the homografts more time to adhere and will likely wait until next week for surgery.

An Attempt to Stand Up

2008-11-11T06:35:00.000-08:00

Heather had a great day yesterday. She spent considerable time with her tracheostomy button or plug in. This makes her work harder to breathe because she must do so around a tube with holes in it that is in her trachea. She seems to be getting much stronger with it though. She also worked really hard in both of her physical therapy sessions yesterday. On Sunday when I was there she was unable to lift a 2-pound weight with her right hand/arm, and yesterday she did. Her right arm is weaker than her left because for a long time it had all kinds of IV tubes, blood pressure cuffs, and ventilator tubes in/over/on it so she could not move it as much. She also tried to stand up for the first time in weeks. She wasn't able to get fully up, but with help was able to raise herself a little off the bed. She hasn't been able to do much to build strength in her lower body because they don't want movement to upset the grafts.

Heather's favorite visitor, Hannah, came to see her yesterday. Apparently they read stories together and enjoyed Heather's new ability to talk. Hannah told me all about the visit as I was taking her home last night. She seemed most struck by Heather's oxygen nasal canula, her bed (and how it changes from a "chair" into a bed), and the squeeze toys (a pig, an owl, a fire truck, and a penguin - Hannah didn't like the fire truck because it was "scary.") physical therapy has brought to Heather so that she can work on her grip strength.

Heather is scheduled for a wound dressing change today. They will again evaluate the wounds and grafts to decide when to do the next surgery. It will likely be next week.

Thank You

2008-11-10T06:39:00.000-08:00

I got home late last night with Hannah to find that people have been quite zealous and extremely generous in their desires to help and be kind to us. I called Heather and we both cried, feeling overwhelmed by all that everyone has done for us. It seems "over the top" to us, and we don't understand. We don't know what to do but to lamely say, "Thank you" to you all. The caring, support, kindnesses, and love mean a lot, big or small.

Heather's sister, Heidi, who came down to Utah again on Saturday (She has taken off work and has come down from Jackson, WY to be with Heather at least four times. She has been at the hospital almost as much as I have, and has been a tremendous help to Heather.), sent me the following in an email this morning. I thought you all might be interested.

Hi Mark, I just had a few things to tell you. For one thing they took the ventilator out of Heathers room last night! Which I thought was a really great sign, not to mention there is more room now. Also Heather said yesterday : "I think I'm getting better". I asked her if that was the first time she really felt like that and she said yes. Not sure if you know this but she also told me she doesn't remember the days between the hysterectomy and going to ICU at all. She doesn't remember all that bloating and pain, which I think is a good thing.

A Good Day

2008-11-09T17:45:00.000-08:00

Heather seems to be doing really well today, though she gets tired quickly. She has not been on the ventilator at all since Friday morning and it seems that she will not go back on it again. She actually seems more comfortable off it than on now. She continues to breathe through her tracheostomy with an oxygen mask right in front of it. Occasionally she plugs her tracheostomy with a "button" and breathes through her mouth and nose, with oxygen in her nose; however, this is still exhausting to her after a while.

The doctor and nurses changed her wound dressings today. Dr. Morris said that her legs look quite good, but that he wants to wait a few more days to see if the cadaver grafts will adhere a little better. He looked at the cellulitis that is now on both of her hips. He said that he was not too concerned about, and that it is probably caused largely by her lack of movement. He seemed to feel that it would resolve. The next step is to look at the wounds again on Tuesday to see if she is ready for autografts.

She is enjoying eating very small amounts of food, though her stomach isn't used to food after being off it for a month.

She Eats!!!

2008-11-08T10:33:00.000-08:00

Heather had a really good day and a mixed night. It is currently almost noon on Saturday and she has been off the ventilator since yesterday (Friday) morning. The button or cap in her tracheostomy tube seemed to tires her out yesterday, but she has had it back in today for several hours and is doing great. It is fantastic because it is a big step forward, and it allows her to talk whenever she wants. It would be wonderful if she didn't need to go back on the ventilator again.

She had a difficult night because her bowels haven't been working very well again, and they gave her a stool softener called Senna that really makes her feel terrible. Within five or ten minutes of taking it last night she started feeling nauseated and continued to feel so throughout the night. It just really doesn't agree with her. She said that she thought she was going to throw up all night. She has been feeling a little better this morning, but not great.

The worry of the day today was that her feeding tube became blocked. They were worried that they might have to take it out and put another one in, which would not be much fun. However, with a few tricks they were able to get it flowing again.

The major excitement of the day is that she had her first drink and ate her first food in a month! A speech therapist just came in and evaluated her ability to eat and drink. After not using her mouth and throat muscles for eating and drinking for so long, they want to make sure she can eat and drink without it going into her trachea and lungs. She did great, so my days of eating Heather's hospital meals are over. I couldn't be happier, even though the food here is actually pretty good. It was like Christmas for Heather to finally be able to wet her throat and taste some new tastes. The speech therapist tested her with ice, water, milk, applesauce, and saltine crackers. Heather seemed to love them all. However, combined with the nausea she already had this morning, the "newness" of food in her stomach seemed to make her feel even more nauseated. They just gave her some anti-nausea medication, so hopefully that will help.

Speaking Like a Pro...Almost

2008-11-07T10:58:00.000-08:00

Heather's sister Holly wrote the following update for her siblings, so I pirated it rather than writing my own. Thank you Holly.

Hello everyone.

Just a little update. There haven't been any big procedures today, but a big milestone was just reached. Heather is basically talking. She was last night, but only when she covered her tracheotomy with her finger, which was kind of a pain. They just put a cap on her tracheotomy and have a tube sending oxygen in through her nose, so she is just breathing and talking all the time. Talking, of course, is gravelly but stronger and stronger.

She also just had the revelation that she can swish juice around in her mouth, then suck it out with a tube. Tasting something besides water for the first time in a month or so was like heaven it seems.

Tiauna just brought Hannah over for the third time. She seems to be getting more used to this weird situation. Heather being able to talk to her made it a lot better (though she was here before they put the cap on). It is really good for Heather to see Hannah.

Heather will be getting two units of blood today because her hematocrit is low. She also continues to do physical therapy, though with her leg bandages on she won't be able to work with them for a few days. She is lifting arms, with weight and can lift her back off of the bed a bit from a seated position.

It's SO great to hear her and not speak for her!!

She Speaks!!!!

2008-11-06T15:57:00.000-08:00

They just took Heather off the ventilator and she can talk! She has to hold her finger over the hole in the tracheostomy tube and her voice is very faint and gravelly, but she can speak. She loves it, and so do we.

Information from Dr. Morris

2008-11-06T15:06:00.000-08:00

Dr. Morris said that the surgery went quite well. He said that the tissue looked good with the exception of a few small spots (dime-sized) that he needed to remove. They placed the homograft and he is optimistic that it will "stick" well. He also said that the new tracheostomy tube seemed to work well, and it should allow her to talk when she is off the ventilator and the balloon that fills the area between the tube and the inside of her trachea is deflated. He said that he was unsure about the cellulitis, other than just to watch it. He said that he thinks it will just resolve with the antibiotic they are giving her.

They will change her leg dressings on Sunday and will have a sense then of how the grafts are doing. If they are doing well, they will look at doing autografts (grafts using her own skin) early to mid next week.

Out of Surgery with Little Information

2008-11-06T13:48:00.000-08:00

Heather is out of surgery and seems to be doing well. They told us she would be in surgery for two to three hours. We went to lunch for an hour and a half, and when we got back she was already out of surgery and back in her room. So, we missed being able to talk to the doctor about how it all went. She seems comfortable, and it appears that they did the homografts. She has already been able to get enough air around her new tracheostomy tube to make some vocal sounds. She is too tired and weak post surgery to see if she will be able to talk when off the ventilator, but it seems very likely.

I will post again when I have more information about how the surgery went.

Great Legs!

2008-11-05T19:55:00.000-08:00

Today Heather's day started out great. She seemed to be feeling great. She worked really hard in her physical therapy and was off the ventilator for two hours. She was quite exhausted after all that. She also had a dressing change on her legs, largely for the purpose of looking at the wounds to find out if she is ready for grafts. The doctor said that her legs looked great (I'm trying to keep my jealousy under control.), and that the wounds look ready for homografts. So, tomorrow she will go to surgery in the afternoon for the grafting and to get a new tube for her tracheostomy. They will put a smaller tube in so that she can plug it off and force air around the tube to talk. Last week when they plugged off her tracheostomy she wasn't able to get any air around the tube. We're crossing our fingers that the smaller tube will work. It would be really nice to hear her voice again. The docotor is still somewhat concerned about the cellulitis in her left hip, but they will just continue to give her antibiotics and watch it closely.

Changing of the Guard and Slow Improvements

2008-11-03T15:16:00.000-08:00

I am back at work during the day and at home at night with Hannah for the next few days. Heather's sister, Heidi, came down from Jackson, WY again over the weekend (went home this afternoon) and her other sister, Holly, flew out from Washington D.C. last night to spend a few days with Heather while I am down here in Utah County. Heather's parents are also back up at the hospital today. As you can tell, Heather is well loved and taken care of.

Heather had another wound dressing change today. The report is that her wounds continue to heal, but very slowly (slower than the doctors would expect). Though we would all like to see her heal faster, we'll take any progress we can get. They have been somewhat concerned about her left hip over the past several days because it has shown signs of cellulitis.

Wikipedia definition of Cellulitis: an infection of the deep subcutaneous tissue of the skin. Cellulitis can be caused by normal skin flora or by exogenous bacteria, and often occurs where the skin has previously been broken: cracks in the skin, cuts, blisters, burns, insect bites, surgical wounds, or sites of intravenous catheter insertion. Skin on the face or lower legs is most commonly affected by this infection, though cellulitis can occur on any part of the body. The mainstay of therapy remains treatment with appropriate antibiotics.

Yesterday when the doctor looked at it, he thought it was looking better than it had on previous days. They are giving her a strong antibiotic and watching it closely. I would sure like to see her leg situation more resolved. They are currently thinking of taking her to the OR again on Thursday for homografts, but it will depend on how the tissue looks at that point.

Heather has been working hard to build her strength. Today she was able to sit up straight (without leaning back against the bed) for quite a while. She hasn't done that in a couple of weeks. She also has more range of motion in her arms, which is exciting to see. It also affords her ever-increasing independence.

A Much Needed Visitor

2008-11-02T12:49:00.000-08:00

After more than a month apart Heather and Hannah got to spend some time together today!!! Hannah was a little uncertain about it all at first, but with a little time she seemed to warm up to it all. It is a little hard to get used to all the strange noises, smells, and sounds of the hospital. It is also odd to see someone you love with machines and tubes connected all over her body. We brought Hannah into the room three times over a two or three hour period. After the second time she was begging to go back in to see Mommy.

The doctor said today that he will probably take Heather back into surgery on Thursday to see if homografts (with cadaver skin) are a good idea. He said that her legs continue to improve.

A Good Afternoon

2008-11-01T17:47:00.001-07:00

Despite a somewhat painful and difficult morning, Heather had a very good afternoon. She felt great, comparatively. She worked really hard in her physical therapy, sat up in her bed for several hours, was joking with us, and felt relatively little pain. It was fun to see her feel so good. It was a dramatic difference from this morning and the past couple of days. Here are a couple of pictures I took this afternoon:

Here's Heather enjoying the light from her new window:

Wounds Heading in the Right Direction

2008-11-01T10:42:00.001-07:00

The doctors and nurses changed the dressings on Heather's leg and abdominal wounds today. Because the wounds are still quite painful and extensive they sedated her to make these changes. They allowed me to stay in the room while they did so, which I greatly appreciated. It is not fun to see the way Heather's body is hacked up, but I would rather see it and know what is going on than not. She has large chunks of flesh missing from her legs, but the doctor thinks the wounds are looking better. The infection and necrosis seem to be under control, and the tissue is more granulated and vascularized (i.e., the cells are regrowing and blood vessels are supplying the area with blood/oxygen which is necessary for healing and for future grafts to work). The doctor was pleased with the progress, slow as it is. He said they will again wait a few days and see how she does. If she continues to do well they will consider doing homografts again.

It is strange to be in the room during these procedures. I am not the queasy type, so the blood and open flesh don't bother me from that standpoint. It is just odd to be in a room where all, myself included, are dressed in plastic gowns, hairnet caps, rubber gloves, and surgical masks; my wife is laying there naked with major parts of her flesh gaping open down to muscle; and all these strangers (5-7 people) are moving her around washing her and placing large segments of black foam and plastic over her wounds. To top that all off, Heather is sedated through all this, but not completely asleep. So she is awake just enough to hazily respond to simple questions about her pain, but doesn't seem to notice all the gyrations they are putting her body through to change her dressings. All in all it is just a strange experience.

She is sleeping now and pretty wiped out. Her hematocrit came up to 24 today, after receiving two units of blood yesterday. We'll see if it improves or if she still requires more transfused blood.

Last night they moved Heather to a new room so that she could have a window. It is a smaller room, but it is wonderful to be able to get some natural light in the room. It is really hard for her to maintain a sense of reality when there is no difference between day and night. She is quite excited about her new room. She has a lovely view of the Huntsman Cancer Center and the hills behind it. Some people have noted that I haven't made it clear what hospital we are in. We are in the Burn Trauma ICU of the University of Utah Hospital in Salt Lake City.

More Rest and Recovery

2008-10-31T08:55:00.000-07:00

Nothing is scheduled to happen today. Heather had a good night's sleep, and her pain was minimal. She will likely spend the day resting, with the exception of some physical therapy and some time off the ventilator. Once her lungs are strong enough to be off the ventilator, they can pull out the cannula (the tube that connects to the ventilator and goes down into her throat) and put a plug in her tracheostomy. This will allow her to talk.

This morning her hematocrit was down to 17 (most of us have hematocrits in the 40s), so they are giving her two units of blood. Because she is so low, she is feeling quite weak and tired. This is likely due largely to loss of blood from her surgery yesterday, but it seems that she is lower than would be expected. They will watch her hematocrit for a while to make sure it doesn't continue to drop.

Surgery Results

2008-10-30T12:53:00.001-07:00

Heather is out of surgery and doing well. They operated on her for a couple of hours and found that they needed to remove more tissue from her legs. They removed a relatively large amount of tissue from the outside of her left thigh and some tissue from the inside of her left thigh and from the outside of her right thigh. Dr. Morris said that the tissue in these areas still had some infection and/or necrotic (dead) tissue. He explained that they try to get all of the infected and necrotic tissue out while being as conservative as possible, so as to leave her legs intact as much as they can. The problem with this approach is that they may miss some of it and have to go back for more. In addition, there is always the possibility of additional infection cropping up.

Dr. Morris said that they took a little more fascia from the outside of her left thigh, but still did not have to get into muscle. He said that it is not unusual to have to go back in to clean things up like this, but of course we would all hope for Heather to have ideal healthy skin that is ready for grafting. She currently has no grafts at all (neither of cadaver skin nor of her own skin). Dr. Morris was unsure when he would try grafting again, as it depends on how her skin heals.

They covered the affected areas of her legs with wound vac dressings. This is where they cover the wound with black foam, cover the foam with a plastic tape layer that forms an air-tight seal around the wound, cut a small hole in the plastic tape layer over the foam, and attach a machine that sucks all the air and fluid out of the foam and the wound area. They have also put her on an antibiotic to fight any infection.

Dr. Morris was reluctant to give any timeline at this point, other than that they will change her dressings and look at the wounds again on Saturday. It is just hard to know how the wounds will progress and when she will be ready for grafts. He is still optimistic.

Some people have asked me how her legs got so bad in the first place. I don’t completely understand it myself, but here’s my best explanation. Apparently, the toxins associated with sepsis and other similar diseases or conditions cause what is called “disseminated intravascular coagulation” or DIC. Wikipedia defines DIC as:

Disseminated intravascular coagulation (DIC), also known as consumptive coagulopathy, is a pathological activation of coagulation (blood clotting) mechanisms that happens in response to a variety of diseases. As its name suggests, it leads to the formation of small blood clots inside the blood vessels throughout the body.^[1] As the small clots consume all the available coagulation proteins and platelets, normal coagulation is disrupted and abnormal bleeding occurs from the skin (e.g. from sites where blood samples were taken), the digestive tract, the respiratory tract and surgical wounds. The small clots also disrupt normal blood flow to organs (such as the kidneys), which may malfunction as a result.^[2]

DIC can occur acutely but also on a slower, chronic basis, depending on the underlying problem.^[3] It is common in the critically ill, and may participate in the development of multiple organ failure, which may lead to death.^[4]

Basically, the sepsis reaction causes tiny blot clots to form in the capillaries, which kills the tissue in the affected areas. In Heather’s case, the only affected areas were her thighs. Several nurses have said that they often have people here on the burn unit who are not as fortunate and end up losing limbs from this condition.

While Heather was in surgery, the doctors changed the tube for her tracheostomy. The new tube will allow her to talk and eat when she is not connected to the ventilator. That is very exciting to me.

Back at the Hospital - Request for Prayers

2008-10-29T21:21:00.000-07:00

I'm back at the hospital. It is a mixed experience. It is wonderful to see Heather again, yet I don't ever think I will enjoy being in this place. It is not a very pleasant environment, and it is hard to be away from Hannah. Heather is really struggling with being away from Hannah for so long.

Heather's sister went home to Jackson tonight. She has been so great to take care of Heather, particularly when I have not been able to be here. Heather's parents have also been troopers to spend so much time supporting Heather here at the hospital. They left this afternoon to spend a night in their apartment in Provo where they will be spending the winter.

Heather and I just spoke with the doctor about tomorrow's (Thursday) surgery. He told us that he is not very impressed with how the homografts (cadaver skin grafts) are looking, though she seems to be making great progress in almost every other area. He explained that there are several places on her legs where it appears that the tissue underneath the grafts is having problems and needs to be cleaned up (i.e., shaved off or cut out). He said that tomorrow they will take all the grafts off and clean all that up. He said that in areas where the wounds are not improving very well he may need to put a wound vac (like the one on her abdomen) on them until they are healthy enough to do grafts. He told us that he may do some autografts (grafts using Heather's own skin) in places where the wounds are healthy enough to have a high likelihood of successful grafting.

Heather is obviously nervous about tomorrow's procedure, which will likely occur in the early afternoon. She asked me to ask family and friends to please pray that the wounds on her legs will require minimal tissue removal, the tissue on her legs will be ready for grafting, the grafts will be successful, and her legs will heal quickly. We would greatly appreciate your specific prayers in this regard.

I asked the doctor some questions about her prognosis. He said that they have not yet had to remove or go into the muscles of her legs much at all. Therefore, she should be able to return to full functioning (including strenuous activities involving her legs). He did have to remove some fascia (a fibrous layer that covers and protects the muscle) from her legs, but that should eventually be replaced with scar tissue. He said that she will most likely stay on the Burn ICU until she leaves the hospital, and that she will likely require inpatient rehabilitation when she leaves here. We can probably do that in Utah County, which would be nice. He said that it will probably take her six months to feel back to normal, and that she will be receiving wound treatment and follow up for a year or more (though it will become very infrequent).

Wound Update and Strength Building

2008-10-29T09:38:00.000-07:00

Heather's sister, Heidi, let me know that Dr. Morris, our doctor/surgeon in the Burn Unit, said that Heather's abdominal wound is looking good and that her leg wounds are so-so. Heidi also said that they will try Heather off the ventilator for a two-hour period today. Heidi said that Heather is currently sitting up in bed (The hospital beds are quite impressive. They can mechanically fold into a chair, which makes sitting and standing tons easier.) and will try to stay sitting up for an hour. It is great to hear her making these improvements that seem so small, but are really huge.

Shower Surprise

2008-10-29T07:00:00.000-07:00

The doctors feel that Heather's hepatitis is resolving, and that it likely was a major source of her diarrhea a few days ago. She seems to be doing much better in that realm. They took her for a "shower" yesterday. Apparently they have a shower where she can be on a bed while they do it. The surprise was that they didn't tell her they were going to take out all the staples that hold the grafts on her legs at the same time as the shower. She had many, many staples holding the cadaver grafts on. She said (mouthed to her sister, Heidi, in that she can't talk yet) that having them removed was quite painful for her. Other than that she had a pretty good day. I can't wait to see her tonight, and it was hard to say goodbye to Hannah this morning.

Another Okay Night

2008-10-28T08:56:00.000-07:00

Heather had an okay night last night. Not great, but okay. Apparently they had to change her catheter during the night. That can't be enjoyable for anyone. Since I last wrote, she has been off the ventilator twice for an hour each time. She reportedly did well while off of it, despite some fatigue afterwards. So, she is building up her lung strength, which is really good.

They have found evidence of Hepatitis A in her blood. They said that having had the vaccination for Hepatitis would cause that to show up in her blood, so we need to check to find out if she has had that vaccination. Otherwise, she has one more thing to deal with. Hepatitis A is not the most serious kind, but it is still a concern.

Away from the Hospital

2008-10-27T09:55:00.000-07:00

I am taking my first break from the hospital in almost four weeks and am at work today. I took Hannah home last night and will do so again tonight and Tuesday night. I will work today, Tuesday, and Wednesday and be back at the hospital Wednesday night after work. It is hard not to be there with Heather and a little difficult to concentrate on my work. It was good to be home with Hannah though, and she really seemed to enjoy it (though she asked about Heather often). It was really hard to be there and to go through our usual routine without Heather. As always, neighbors and ward members have been very generous in taking care of us.

Heather's sister and parents are with her at the hospital. They said that her night was okay, but that she continues to struggle in getting her bowels to be regular (it is tough with all the antibiotics, stool softeners, and narcotics she has been taking). They took her off the ventilator for a bit this morning, and she seemed to be doing well with it when I called.

Visiting

2008-10-26T11:43:00.000-07:00

Some of you have asked about visiting Heather. She loves seeing people she knows, and appreciates the effort involved in people coming to see her. However, she is still very tired and needs a lot of sleep. Having too many visitors would surely wear her out, so it is a tough balance to strike. I discussed it with her, and she would like people to come if they want to, but it would be helpful for people to call (my cell number is 801-367-8077 and her room telephone number is 801-585-8415) in advance so that we can make sure too many don't come at once. They only allow two visitors in her room at a time, so that limits things too. Every day, nursing shift changes occur between 7 and 8 in the morning and in the evening. No visitors are allowed into her room during that time.

In terms of emailing more personal messages, you can send them to me at mark_beecher@byu.edu.

Surgery on Thursday

2008-10-26T11:05:00.000-07:00

The doctor looked at her abdomen and legs and said that they look okay. Some of the grafts are taking well, and others are not. He would like to wait a few days for the surgery so that the grafts and the skin beneath them have time to do as much healing as possible. They will now change her wound dressings every day. It is quite the process. The nurses do an excellent job. I'm really impressed with the care they take. I got to see her legs unwrapped. She definitely has a long way to go, and will have significant scarring and some deformation on them. As I have mentioned, on Thursday they will take the cadaver skin off and put her own on (taken from her flanks and back).

I thought I would include a picture of her from her little excursion to see the light of day yesterday. She really seemed to enjoy it. (That is her nurse, Christi, in the picture. She has been great to Heather.)

Difficult Night

2008-10-26T08:18:00.000-07:00

Though she continues to do well in terms of her vital signs and healing, Heather had a bit of a bad day yesterday and also a somewhat difficult night. She has had nausea, a stomach ache, and diarrhea, which has meant significant discomfort and many (8 or 9) linen changes since yesterday morning. These are quite painful and humiliating to her because one to two nurses and one to two aides must come in, roll her onto one side, clean her off, strip the linens off the half of the bed she is not laying on, put new linens on that half of the bed, roll her over the top of the new linens onto her other side, pull the linens over the rest of the bed, and roll her back onto her back. They also often must cut off the top part of the wound dressings on her legs when they become soiled (This involves cutting off an ace bandage, replacing several layers of gauze, and re-rolling a new ace bandage.). Though the nurses and aides are very respectful, kind, and efficient at what they do, it just hurts Heather to be moved around so much. It is also embarrassing to her and she hates feeling like she is a burden to the nursing staff who have to go through this process repeatedly (even though they never indicate any hesitation or frustration with it). Then, to have an upset stomach and nausea on top of the pain and frustration, makes things miserable. She has also struggled to breathe some, though her ventilator numbers suggest that she is breathing very well.

They have ordered chest X-rays to make sure nothing is wrong with her lungs. They ordered an ultrasound of her gall bladder to make sure she doesn't have stones and to make sure her gall bladder is functioning properly. They are testing her stool for possible infection. They may do a CT scan to see if anything is going wrong with her bowels (They will wait and see how she does this morning.), and they are giving her some medication to calm her bowels down. They said that her liver enzymes are up somewhat, which suggests some liver distress. They will watch that carefully to make sure it doesn't get worse.

In the last hour or so, she seems to be feeling much better. Her stomach ache and nausea have subsided, and she seems visibly relieved. It makes everything significantly better for her. The medication they gave her to calm her bowels (Reglan) seems to be working. They also have begun giving her Methadone to replace the Fentanyl they were giving her for pain. They also give her Oxicodone for pain.

One thing that I don't think most people realize is that in some ways this period is more difficult for Heather personally than just about anything she has experienced so far. Everyone around her and everyone who has been following her experience sees how far she has come and how much she has progressed. However, she was asleep for most of that and doesn't remember it. Now, though what she is going through is much less life threatening, she must face the long road of recovery and frustration at not having control over much of anything in her life right now. She can't talk, so she can't call out for help or explain what she needs very well. She can't lift her arms or move her fingers very well, so she can't hit the nurse's button or wipe her own face very well. It is a powerless position to be in, and it gets to be quite frustrating to say the least. She vacillates (as I do too) between feeling hopeful, optimistic, and at peace and frustrated, anxious, and overwhelmed.

Her doctor will take off her wound dressings in about 15 minutes to see how she has done with with the cadaver grafts. He will decide at that point what the next step is and when they will take it. From what the nurses have seen when they have looked at her grafts when they have had to change the dressings on the upper part of her legs because of bowel movements, they feel the grafts are looking quite good and seem to be "taking" as they should. I'll let you know what they find.

Another Day of Rest

2008-10-25T09:10:00.000-07:00

Nothing significant is planned for today, just rest and recovery. I'm sure the physical therapist will be in to work Heather's muscles a bit, and the respiratory therapist will take her off the ventilator a bit. Yesterday, they took Heather off the ventilator for an hour and a half to try to build up her lung strength. She did well, but it made her quite tired. She slept much of the day. When she was awake, I read your emails, letters, and blog comments to her. She really appreciated them. Thank you all!

Last night they took her NG tube out (NG = nasal-gastric, it is the tube that goes in through her nose and down into her stomach to pump out excessive gastric juices). It is fantastic to see another tube come out, hopefully for good. So, she only has one tube (the feeding tube) down her nose now and only a few IVs. Her bowels have been a little slow, but are working fairly well. All in all, she really seems to be progressing well.

Her nurses have been great. They have done some kind, non-essential things to make Heather more comfortable. They washed and braided her hair; they painted her fingernails and toenails with bright, glittery polish; and today they are going to roll her bed out to a window where she will have a view of the Salt Lake Valley (just for a stroll so she doesn't feel so cooped up and gets a chance to remember there is a real world out there). I appreciate the special care they have given her. It makes a big difference.

Good Day to Rest and Build Strength

2008-10-24T09:41:00.000-07:00

Heather is doing really well today. She again had a good night and slept well. They took her off the ventilator and let her breathe on her own (with oxygen supplementation) for about thirty minutes this morning and will do it again this afternoon. She did okay without the ventilator, but it does tire her out. She has been coughing up a lot of phlegm and gunk, which is good except that she has so much of it. The respiratory therapist was unsure why she had so much. They will watch for possible pneumonia, though that doesn't seem likely at present. All-in-all she seems to be doing really well.

Surgery Went Well

2008-10-23T11:44:00.000-07:00

Heather is out of surgery, and it went well. They basically did everything they said they would. The took some pictures of her legs which I got to see. As you can imagine, the wounds are significant, but the doctor is optimistic about her recovery. They will look at how things are on Saturday and Sunday and then look to autograft (graft using her own skin) sometime next week. The doctor said this surgery shouldn't cause her any significant additional discomfort.

Pictorial History

2008-10-23T10:23:00.001-07:00

Here are a few pictures of Heather I have taken throughout this process:

This picture was taken the day after Heather's hysterectomy (10/01).

This picture was taken on Saturday afternoon (10/04), the day before her second surgery. Notice how she has lost considerable weight and looks rather wan. This was just before she had a very miserable night.

This was two days after Heather came to ICU (Tuesday, 10/07). I wish I had taken a picture when she was at her most bloated, but it was a rather stressful time and I had other things on my mind.

I included this one to show all the machinery she was hooked up to. She had many other things hooked to her on the other side of the bed too.

They put this "enforcer" on her to keep her from biting through her air tube and to hold it in place.

It was nice to get a hair wash and that nasty "enforcer" off (10/15).

A little bit of exercise with the physical therapists. It is tough trying to keep ahead of the muscle wasting caused by being in bed 24/7. (10/18)

Without the ventilator Heather became quite weak (10/20).

I took this picture Tuesday night (10/23) after the surgery on Heather's legs and her tracheostomy.

Doing Well and In Surgery

2008-10-23T09:38:00.000-07:00

Heather had a great day yesterday. She seemed to be feeling better than she has felt in a long time. She was able to sleep well through the night again, which is wonderful. She seemed really tired this morning, but was able to work with the physical therapist to do a little exercise. Her muscles are very weak, but she seems willing and motivated to work hard.

She was scheduled to go into surgery at 1:30pm today, but they changed the schedule and she is currently in surgery. She went in at about 10:30am and should be in there for about an hour. As I explained in an earlier post, they will clean out all of her wounds and make sure they have gotten all of the dead and infected tissue. They will then cover the wounds with cadaver skin. They use the cadaver skin because skin is excellent at keeping bacteria and infection out while keeping the undertissue moist (I guess it is no big surprise that skin does the best job at doing what skin does.). She will probably go back into surgery on Monday or Tuesday to have the cadaver skin taken off and her own skin put on. They said that they will take her own skin from her flanks and/or back. They said that the donor sites hurt worse than the wound sites for most people and that the wound sites actually tend to feel better once your own skin is placed on them.

Much Better Today

2008-10-22T09:27:00.001-07:00

Heather is doing significantly better this morning. She is as alert and clear thinking as she has been in weeks, and she seems much stronger. Her delusional thinking seems to have cleared, which is a huge blessing to me. It is bad enough to see her have to go through all of this stuff, but it is exponentially more difficult when she is feeling persecuted and distrusting. She seemed to have a good night, and said that she was able to get some good sleep (which she hasn't been able to do for some time). Her pain seems well controlled, and her vital signs all seem good.

Her doctor came in this morning and said that he will change the dressings on her legs later on today. He will take her back into surgery tomorrow to clean out the wounds in her legs and to make sure they got all of the dead tissue out. He said that they will dress her wounds with cadaver skin after her surgery tomorrow. He said that he was impressed with how good she looks today. It probably really helped her to get all that dead tissue out of her body.

It is wonderful to see her beautiful smile and to have her communicating relatively normally with us again. Thank you all for your caring, prayers, and support.

Surgery Results...Long Difficult Road Ahead

2008-10-21T16:15:00.000-07:00

We just spoke with the surgeon. The wounds on her legs are much, much worse than anticipated. They extend deep into the tissues of her legs, in some cases several inches down to the fascia and muscle. He also said that it is very irregular or marbled in veins rather that affecting broad areas of tissue. They worked to remove as much of the dead tissue as they could. He estimated that they took out between four and six cups of tissue from her legs. This means that she will require extensive wound care and several more surgeries before they will do any grafting. She will likely be in the Burn Unit ICU through the end of the month.

He is optimistic that she will be able to regain full functioning, but not without extensive rehabilitation, likely continuing through the end of the year. After she leaves the hospital she will, likely need to be in inpatient rehabilitation for some time. She continues to be very, very sick. When asked if this is rare, he replied that it is extremely rare occurring at a rate of 1:250,000 to 1:1,000,00.

He said that the surgery went relatively well, considering. Her heart rate stayed constant, and the tracheostomy was placed without complications. They will monitor her hematocrit to see if she requires transfusion. She continues to have a long and rough road to travel. We appreciate your prayers and concern.

Tracheostomy and Surgery This Afternoon

2008-10-21T10:09:00.000-07:00

We just spoke to the burn unit doctor and team again. After talking with the ICU team, they all feel that Heather is really struggling being off the ventilator and that she is just getting weaker and weaker. So, they feel it best to put her back on the ventilator and to perform a tracheostomy (i.e., cut into her neck and into the trachea, then insert a breathing tube and sew it in place). Those this prospect is disturbing to us, we feel it will be better for her in the long run. She will likely have it in for a couple of weeks, but there is less chance of problems (e.g., vocal chord damage, irritation of her throat, etc.) with the tracheostomy than with the tube in through her throat. There are also more possibilities for her to improve her strength with the tracheostomy because she will be able to walk with it, where she cannot with tube in through her mouth. In addition, they can disconnect and reconnect her easily with the tracheostomy, which will give her the chance of building up her strength through repeated trials without the ventilator. Obviously, I would prefer that she not have to have it, but it seems the best option.

The doctors also feel that it will be best to perform the surgery on her legs today at the same time they are doing the tracheostomy. They said that the main hesitation they would have about doing it today would be if she was weak in her breathing but improving. Waiting would give her more time to improve and develop strength so that she could stay off the ventilator after the surgery was over. However, if she will just be intubated anyway, there really isn't any reason to hold off on the surgery. Please keep your prayers coming today.

Breathing, Delusions, Surgery, and Heart

2008-10-21T09:02:00.000-07:00

Since she got the ventilator tube out yesterday, Heather has been breathing moderately well to poorly at times. Last night she seemed to be working pretty hard (i.e., quick, short breaths - about 35-45 breaths per minute, whereas they would like her down in the teens). They debated whether to intubate her again, but decided to put her on a bi-pap machine that supports her breathing through a mask on her face instead. She does not like it very much, but has kept it on throughout much of the night and this morning.

Something that has made it all more interesting and difficult is that she has been quite delusional since last night. She has been able to talk a little (her voice is very gravely and quiet, but if you get right up to her mouth you can hear what she says), so we have a better sense of what is going on for her. She seems quite confused and scared, believing that the doctors and nurses are out to get her. I really don't think she was feeling that way while she had the ventilator tube in. Last night she thought that they had taken her to laundry room and that they had been performing transplants on her. She felt that they were hooking her to a vacuum cleaner that she had seen an aid using earlier. She plead with me to take her home, where she felt she could heal better and do fine. She refused to have the bi-pap mask put back on. It was really hard to see. This morning she continues to express her suspicions and frustration. I really can't blame her because people are constantly talking about her instead of to her (though they try to speak to her too) and she is continuously having procedures done to her that are out of her control. They doctors say that this happens all the time in the ICU, but that they are investigating for other possible causes (eg., infection, stroke, etc.). They feel it may be related to the dead skin on her legs, which brings us to surgery.

Heather will be going up to the burn unit this afternoon to have the dead skin on her legs surgically removed. They will then put cadaver skin on the wounds to stimulate growth. Then, after about 5 days, they will take the cadaver skin off and use her own skin to graft onto the wounds. They think she will probably come back down to the ICU after her surgery, but are unsure. It is likely, since she has struggled so much with her breathing, that she will likely remain intubated after the surgery.

****News Flash****
As is common here, plans seem to change quickly. Dr. Morris, the doctor that will be performing the surgery on her legs, just stopped by as I was writing this. He and his team just went in to talk with the ICU team to decide whether it is in Heather's interest to wait a few days until she is breathing better and is more settled to begin the work on her legs. So, we are unsure whether she will be going to surgery today or not. We should know shortly.
*******************

One other issue of concern is that Heather continues to have dramatic vagal responses (i.e., her heart rate quickly drops down to the 30's and threatens to stop) to just about anything, but particularly things having to do with her throat and breathing. The bi-pap machine seems to trigger it quite a bit (i.e., a couple of times per hour). The doctors are unsure why that is the case, other than her just being really sensitive to that vagal response. They said they could give her a medication to increase her heart rate, but they gave it to her yesterday it jacked her heart rate up to the 140s. So, they feel it is better to watch her carefully and let her ride these episodes out.

It is tiresome to ride this roller coaster of emotion and worry. Like she does, I wish we could just go home.

So I Lied...

2008-10-20T12:42:00.000-07:00

As usual, what I thought was going to happen and what is actually going to happen don't exactly match up. Though Heather currently does not have an NG tube (the suction tube that goes in through her nose to her stomach so that bile and gas don't build up), it turns out that they are going to put it back in...at least temporarily. They have increased the rate of her tube feeds (liquid drink akin to Ensure sent through a tube that goes in her nose, through her stomach, and into her small intestine). As you may recall, in the past the doctors and nurses were concerned that her tube feeds may have been backing up into the stomach where they got sucked out by the NG tube. So, as they are increasing her feeds, they want to make sure it isn't just backing up into her stomach. They will put the NG tube down. If it remains clear of tube feeds, they will take it back out.

Heather has been extremely sleepy today. She can barely respond. She seems exhausted, most likely from having to breathe on her own after two weeks of assistance. The physical therapist came in and could barely get her to wiggle. They say she will get stronger quickly. Her voice is just barely beginning to return. The only intelligible word I have heard is, "No!" when I asked her she needed pain medication. She wouldn't be a good drug addict. The narcotics really seem to make her feel sick.

The Tube Is Out!

2008-10-20T07:48:00.000-07:00

Believe it or not, they extubated Heather this morning. We weren't sure it would ever happen, but here she is without it in. She can't talk yet, in that her vocal chords have been abused for the past two weeks. She is dying for a drink, but she can't have water right now. She seems pretty uncomfortable and weak, but indicates that she is really glad to have that tube out. So are we!

Ulcers

2008-10-19T16:11:00.000-07:00

They performed an endoscopy and found that Heather has three small ulcers at the top of her stomach. These may be the result of the NG tube irritating the wall of her stomach and/or her prolonged sickness. Either way, this is good news in that it helps to explain some of the blood loss/low hematocrit and is not particularly serious (compared to the many possibilities that could be far more troubling). They said that the ulcers seemed to be healing already, but that they will give her medication to help even more. They also took her NG tube out and won't be putting it back in. Hooray! One more tube out. We haven't heard any word on removal of the ventilation tube.

Heart, Lungs, Stomach, Legs, and Exercise

2008-10-19T09:59:00.000-07:00

Today when Heather's sister, Heidi, and I got to Heather's room they informed us that she again had a vagal response while they were suctioning her breathing tube and her heart stopped again. I say let's get that tube out so that won't happen anymore.

Her breathing is doing really well, and she is strong enough to be extubated today (I know. You've heard that before.). There is a catch, however. They have noticed what may be blood coming out of her NG tube (It looks a little like coffee grounds.). So, in order to be sure, they are going to put a scope down her throat and into her stomach to look for potential sources of bleeding (eg., ulcers, irritation in the stomach from the NG tube rubbing on the lining, etc.). They also wonder if it may be old blood that was the reason for her low hematocrit yesterday. (By the way her hematocrit looks good today, between 32 & 34.). They don't want to extubate Heather until they have done the scope and know what is going on with that. Again we wait.

The burn doctor came and looked at Heather's legs this morning, and said that they still are looking to doing surgery next week. He said they have to shave away the dead skin to find out how deep it is and whether/how many grafts will be required. He said they may need to use cadaver skin to stimulate growth, but they will definitely use her own skin which will possibly be taken from the back of her legs, her hips, or sides. If they can, they will likely keep her here in the Surgical ICU, but it will depend on what her needs are as they start working on her.

The physical therapists came in and again had her sit up. She seemed quite tired from her standing up episode yesterday, so they did not push her to stand again. Though more tired today, she seems stronger to me.

CT Results and More Units of Blood

2008-10-18T16:24:00.000-07:00

The results of the CT scan did not show any problems with the bowel or internal bleeding. She did have fluid in her abdomen, but it was not as thick as blood. The doctors think it is still fluid left from when she was so bloated. They can't find any other blood loss, but her hematocrit continues to drop. It was 19 when they gave her the two units of blood I wrote about yesterday. The transfusion bumped her up to 24 or 27 (I can't remember which), but this morning she was back down to 22. So, they gave her two more units of blood today. Since they can find any place where she is bleeding, they think it is probably a condition called anemia of chronic illness. Apparently this happens in people who have been through significant trauma or illness. Basically the bone marrow becomes so taxed that it stops producing red blood cells, which leads to anemia such as she has been experiencing. They said that the treatment is to support her with transfusions until the bone marrow kicks in again.

The physical therapists came in and helped Heather to stand up! That is the first time she has done so since October 5th! Of course she was extremely weak and needed help to get up and down, but it is movement in the right direction. They really want to get her moving so that she can build up her strength. She seems very motivated and, despite being tired, frequently asks to do more exercises.

I knew she must be getting back to being herself today when she asked to spell out the following sentence on the speller machine, "I am supposed to teach." She meant that she is supposed to teach relief society in church next week and was worried that she hadn't gotten anyone to cover for her. I just laughed, but she insisted that I call the relief society president, Marion Davis, to make sure it was taken care of. Marion thought it was funny too. Maybe someday Heather will get the ventilation tube out so that she can more easily communicate her needs.

Not Much New To Report

2008-10-18T10:07:00.000-07:00

Heather is getting stronger by the day. Yesterday, with the help of the physical therapists, she sat up on the edge of her bed. Despite being very dizzy and wobbly, she was able to hold herself up for a bit. She has also been doing a lot of leg, foot, arm, and hand exercises throughout the day to build up her strength. Her breathing seems much stronger, but I'm not going to make any more predictions about when the tube will come out (clearly, I'm always wrong).

They are taking her for a CT scan this morning because the food they send through a tube that goes in her nose, through her stomach, and down into her intestine continues to come back up through the NG tube that goes in through her nose and down into her stomach. She also had some abdominal pain this morning [Imagine that! It just seems so strange that someone with three intestine joints, a recent uterus removal, and a 12+ inch long incision through the fascia of her abdominal wall would have pain down there. :) ]. They want to make sure she isn't bleeding or leaking somewhere. They had to give her two units of blood yesterday because her hematocrit dropped low. They say that there are numerous reasons that it may have dropped, but they want to rule out any internal bleeding.

Heather got a bit of spa treatment today. Her nurse was kind enough to wash, condition, and dry her hair. She also shaved Heather's legs and plucked her eyebrows. Heather's sister, Heidi, combed out her hair and braided it into a pony tail. I know Heather really appreciated being spruced up a bit. As always, Heather is wearing the latest and best fashion in hospital wear. With the high fashion label, "Central Laundry" prominently displayed on her gown.

Not Today

2008-10-17T14:06:00.000-07:00

Heather is too weak to get her ventilation tube out today. Her muscles throughout her body are all just mush. They say you lose 20% of your strength for every week you are in bed. The goal now is to get her doing multiple exercises to increase her strength so that not only her lungs are stronger, but all of her muscles are. The doctors keep saying that she is "very, very close" to getting the tube out, but not close enough. It is kind of maddening to be patient (I mean that in more ways than one.).

Hannah Missing From Blog

2008-10-17T11:30:00.000-07:00

Hannah has been noticeably absent from our blog, and I felt we needed a picture of her. So, thanks to my sister-in-law, Janna, I present to you the following:

We love and miss that little girl!

Still Waiting for Extubation, but Probably This Afternoon

2008-10-17T09:33:00.000-07:00

The doctors were hoping they could take Heather's ventilation tube out this morning, but she wasn't quite ready. She is very, very close to being strong enough, but the doctors want to wait until at least this afternoon. It is clearly easier for her to breathe.

Heather seems more lucid all the time, but still a little loopy. It is nice to see her sense of humor come back. She expresses quite a bit through body language and facial expressions. The speller machine I mentioned yesterday has been useful, though laborious.

She has been working with a physical therapist to build up her strength. She still can't raise her hands or arms much at all. This may have something to do with her wrists being tied to the bed :). As you can imagine, she is very weak after having been in bed for three weeks. So, it will likely take her a while to build her strength back up.

They are still planning to begin doing the skin grafts on her legs Monday or Tuesday. When they do that, they will move her from the surgical ICU to the burn unit ICU. I'm impressed with her progress.

No Extubation Today, Probably

2008-10-16T07:24:00.000-07:00

We were hoping that Heather could get her ventilator tube out today. Unfortunately, her breathing is just not strong enough yet. It is a bummer, but I would much rather wait and have her be ready than take it out and have to put it back in again. Hopefully she will be ready tomorrow.

In the "good news" department, Heather had her first bowel movement without the help of an enema. Apparently it was quite a doosy too. Sorry to those of you who are faint of heart, but let's just say the nurses had to clean her ankles. I guess all the laxatives, stool softeners, and bowel stimulators did their job. Great for Heather, not so good for the nurses that have to clean it up.

Yesterday they put a wound vac on her abdominal incision site. They say that this device will help her close up her wound and heal about three times as fast as she would without it. Her legs are looking really good, comparatively. The dead parts, which are significant, are all turning black. The skin in between the dead parts seems to be healing and recovering quite well. It looks like they will begin treatment (i.e., skin grafts) on her legs early next week.

She continues to communicate through head shakes, eyebrow lifts, and repeated games of "20 Questions." At times she seems really lucid, but most of the time she seems quite loopy. She sleeps a lot. The doctors say many people are a little (or a lot) psychotic for a while after awakening in the ICU. Certainly all the narcotics, etc. that she is taking don't help much with that either. She really seemed to enjoy seeing her parents last night when they arrived (They went home to Jackson for a few days and just got back last night.). She definitely recognizes familiar faces, and seems most attentive and lucid when I talk to her about Hannah.

Heart Stopped Briefly

2008-10-15T09:08:00.000-07:00

Heather's scared us all for a moment this morning. The respiratory therapist was adjusting the air flow on Heather's ventilator and noticed that there seemed to be some raspiness in the tube. So, she began suctioning out the tube, which purposely induces a cough to pull out any fluid and/or phlegm down there. As she was doing this Heather's heart stopped. I have never seen so many doctors and nurses coming running all at once in my life. It was VERY disturbing! Before they could do anything, Heather's heart began beating again and she was fine. The doctors told me that, though this is uncommon, the cough reaction can stimulate the vagus nerve which causes a reaction in which the chest tightens up to the point where the heart cannot beat. I do not want to replay that experience ever again. It was reassuring, however, that all those doctors and nurses came so fast. They really seem on top of things.

I have talked with Heather some today, but she seems very tired. She was feeling some pain when I first got here, but the nurses quickly remedied that. In order to facilitate communication, they gave us an electronic device with oversized letters, similar to a large calculator and about the size of a piece of paper. We have tried using this to spell out things Heather wants. The first thing she asked for was, "snack." Unfortunately she can't eat anything with her tube in. She seemed quite frustrated by that. The second thing she asked for was, "date." Though I am not completely sure about it, it seemed that she wanted to know the dates of her various surgeries and the current date (She has a large, daily calendar on the wall.). She also asked to see pictures of Hannah. My sister brought us two large pictures of our family, which Heather has asked to see a couple of times. I also showed her some pictures I have of Hannah on my laptop. That is all she has had energy for today.

They moved Heather to a new room in the ICU. Because they have so few patients right now, they closed down one wing of the ICU. It's kind of a bummer, because she had a really nice, sunny view of the valley in her old room. Now she just has a cold, dark view of construction. Oh well, at least her heart is still beating.

Doing Well!

2008-10-15T07:14:00.000-07:00

Late last night before I went to my sister's house to get some sleep I was able to sit down and talk with Heather for quite a while. She was very coherent and definitely understood what I was telling her, even though she obviously could not talk with the ventilator tube in her throat. We were able to work out a better system for her to communicate with me, and it was wonderful to feel like I was able to "connect" with her again. I was able to tell her more about what has gone on, how Hannah is doing, all that so many of you have done for us, etc. It was really nice.

I haven't seen her yet today. They won't let us into the ICU during the nursing shift changes, which are 7:00-8:30 in the morning and evening. However, this morning I called the nurse that was taking care of Heather overnight and she said Heather did really well last night. She said that Heather slept much of the night and has told her that she is not feeling any pain. The nurse was able to reduce her pain medication (Fentanyl) from 140 mcg/hr to 80 without Heather feeling pain. The nurse also said Heather's fever came down to normal, and she was able to have a bowel movement with the help of an enema (Hooray!!!!). The nurse said that it was a good, big bowel movement, and some hard stool came out suggesting that she has been backed up. I'm sorry if this seems too graphic or personal for some of you, but I know many of you want to know and I'm pretty sure Heather doesn't care. The nurse said that immediately after the bowel movement Heather's heart rate dropped to between 70 and 75, which is the lowest it has been in weeks. Her blood pressure has been in the 120s, which is great. In addition, her respirations per minute are down in the teens, while they were up in the 30s yesterday. All in all, it is great news this morning. Please keep the prayers coming! Thank you.

A Fever

2008-10-14T19:00:00.000-07:00

Heather has done reasonably well today. It has been really nice to be able to communicate with her, if only a little. She seems scared and distressed to me, which is hard to see. She clearly wants to talk, but it is really hard to guess what she wants to tell me when she cannot say anything. It is also hard to know how much she understands about what is going on. I have tried to explain what she has been through.

The nurses who have seen many people in similar situations as Heather's say that people typically want three things: to get the tube out of their throat, a drink, and to go home. They also say that people don't tend to remember much of what is said while they are in this state. So, it is hard to know if I should explain what has happened to her repeatedly or what I can say to help her gain some sense of where she is and what is going on. She has been awake often throughout the day, but she also sleeps quite a bit. She hasn't needed any sedative, but has been given a lot of the pain killer.

Her bowels are still quite sluggish, if they are moving at all. This afternoon she spiked a fever of about 103 or 104 (39.6). They are unsure what that might be and are running several tests and cultures to figure it out. It could be infection in any number of places, her lack of bowel action, etc. They have given her an antibiotic. They have also given her a medication that counteracts the narcotic they are giving her just in the bowel. Hopefully all of that will help.

Chest Tubes Out

2008-10-14T10:56:00.000-07:00

Heather seems to be doing quite well. The doctors took out her chest tubes this morning. These are the tubes that were inserted through her ribs into her chest under her arms. It is nice to have one more potential source of infection gone. She is also down to just two IV pumps, one for her pain medication (Fentanyl) and one for electrolytes. It's great to see all this equipment go. They did add a new gadget yesterday. She is now wearing some really cool, moonboot-looking things to protect her heals from getting sore, tender, and mooshy (Napoleon would be jealous!).

Responsiveness!

2008-10-14T07:57:00.000-07:00

Heather is awake and can respond! It is so good to have her be awake enough to communicate, even if she can't talk because of the ventilator tube. She clearly understands what I am saying and can blink her eyes, shake her head back and forth, squeeze my fingers, and move her feet. I can't wait until they can extubate (take the air tube out) her, which may happen today but more likely tomorrow. They have stopped giving her the sedative completely now, which is nice.

Her heart rate has risen a bit (110-120), and she occasionally still has a fever that seems to come and go. Her bowels still aren't working, which is a concern. They have reduced her IV feedings and have been feeding her through the feeding tube that goes in through her nose to her small intestine. However, her bowels haven't been utilizing it as they should. Instead, it has been backing up and coming back out through her NG tube (the tube that sucks out her stomach). Part of the problem is that they are giving her narcotics for pain, but these also slow her bowels down. It is a tough balance. They are trying to get her bowel working by giving her laxatives, suppositories, enemas, and other medications to stimulate it. It is troubling to me to see her here again because this is where we began after the first surgery. Please keep her in your prayers that all of her systems can work well.

Patience Required

2008-10-13T08:01:00.000-07:00

Heather seems to be holding steady. There really isn't much new to report. Her numbers are all really good and she is doing quite well, considering. They doctors all seem really relieved and happy with her progress. They hope to lighten her sedation, but every time they do so she seems quite uncomfortable (wincing, rolling her head back and forth, breathing irregularly, etc.), so they increase the sedation again. They say it will be slow and gradual. When she is able to breathe more normally on her own and respond to commands (eg., hold up two fingers, lift up your head, etc.) they will take her off the ventilator. It is clearly uncomfortable for her (as it would be for any of us), as she tries to bite it and use her tongue to push it out when they let her wake up at all. Her arms are tied to the bed so that she cannot reach up and pull it out. Last night, because she was biting the tube so much, they put a device called an "enforcer" (pleasant sounding, isn't it?) on her face. This looks like some kind of orthodontic headgear. It is a plastic mask/mouthpiece that prevents her from biting through her tube. It looks worse, but seems like it would be far more comfortable. Before, they just had a ribbon that looked like a horse's bridle that cut into her cheeks holding the tube in. Heather has had a bit of a fever, so they are doing cultures of her blood to find out if the elevated temps are due to infection.

The hard part for me right now is being patient, while we wait for her to be well enough to come off the sedation and to get off the ventilator. I know I should be grateful that she is doing so well (and I truly am), but I also want her to be well NOW! I'm sure regaining consciousness will not be a pleasant experience for her.

All Closed Up

2008-10-12T11:08:00.000-07:00

We just talked to the surgeons (12:10pm), and Heather is all closed up! She still has a large wound, but the peritoneum is closed. They said that closing her up is a big step, because most people seem to really make big improvements once the body is closed. We asked them why that is, and they said they don't know. I guess the body just likes to be closed...imagine that! They again said that she will have a bandage that has a vacuum-type thing attached to it that helps wounds like hers to heal (Clearly, I don't fully understand how it works but I will try to clarify it as I understand it better.). The other advantage to being closed up is that they can begin to "wake her up" and can work towards getting her off the ventilator, the NG tube, and the feeding tube.

I also spoke with the burn doctors. They said they will likely begin treating her legs (i.e., She will get skin grafts for her legs) at the end of this week or the beginning of next week. They said that it doesn't seem to be too serious and that most of the wounds on her legs will heal by themselves.

Surgery Bumped for a Bit

2008-10-12T07:52:00.000-07:00

Heather was scheduled for surgery at 8:00am; however, a trauma patient was flown in and bumped her to later on this morning. She will probably go in around 10:00. She is almost back to her normal appearance (minus all of the bazillion tubes coming out of her body) and is not losing nearly as much fluid as she was before. They will probably give her more diuretic to get more of the fluid out of her body as the day goes on.

In most ways it is really great to see her back to her normal appearance, but in others it is harder for me. Now that she looks so much more like herself, it feels like she should be able to just wake up and talk to me and to go home. I miss her.

Many people have asked how I am doing. Obviously, last Sunday and the early part of last week were extremely hard for me. It was almost unbearable to consider her not being a part of my life and Hannah's life anymore. It seemed like a really bad dream, and I definitely was in shock. I have been amazed at her consistent improvement and surprising lack of significant setbacks. As she has continued to do better, it has, obviously, been much easier on me. I'm very optimistic about her recovery. I get good sleep at my sister's apartment (Shalisa and Mike have been very generous to open their home to Heather's sister and me.) every night. Really, I just spend a lot of time sitting in Heather's room, holding her hand, and reading or working on the computer. I have a lot of support. My parents are here almost every day, and Heather's parents and her sister, Heidi, have been here since last Sunday. My sister, Tiauna, has generously been watching our little girl, Hannah, (and our dog, Greta) and brings Hannah up to the hospital for a few hours about every other day.

Friday night Heather's sister and I took Hannah and Greta home for a night. I hope to do that again soon, so that Hannah can remember what it is like to be home. We had fun hanging up all our Halloween decorations. I have to admit, though, that it was really hard for me to be home without Heather (especially when I put Hannah to bed and went through our usual nighttime ritual of prayers and songs).

People have been so kind and generous to us. I can't believe the number of people who have prayed and fasted for us. Many have driven long distances to come and visit us and/or to bring us kind gifts or things we need. People like Tiauna and Marion Davis have been great at being information relay points. Ginny Johnson has made several trips to bring us stuff (including a late night trip before Heather was moved to ICU to bring her some rubbing lotions when Heather's back was hurting her so much) and worked hard to harvest, distribute, and even can the vegetables from our garden. Mark Johnson made a special trip to bring me his cell phone when he heard the minutes on mine were gone (I have more minutes now). Someone mowed our lawn. Someone "stole" our Jeep along with the registration renewal form to get it inspected and ready for the required annual registration (I have heard that it was the Jarretts.). My sister-in-law, Janna, created the blog header. The young women in our ward all wrote cards to Heather, and others have sent cards, flowers, and other gifts. I'm sure that there have been many, many other things that people have done that I'm not yet aware of. I am so grateful to everyone. It amazes me (and doesn't) how much people care about Heather. I really appreciate everything people have done and have offered. Thank you!

A Little Bit of Closure

2008-10-11T09:56:00.000-07:00

Heather went in for surgery this morning. They closed up her abdomen about 2 inches on either side of her incision. They did not use the velcro option (It's called a Whitman Patch.), but instead sewed her up using an interrupted stitch (At least I think that's what he called it.). Basically, they sewed individual, disconnected stitches so as to avoid cutting off blood supply to the area of the cut. The surgeon said that in normal cases they would sew up the person using typical stitches in which they are all connected (i.e., one single thread), but with her post-septic state they want to maximize blood flow. He also said that they do not actually sew the skin together but the tough peritoneum, which is the membrane that surrounds and protects the abdomen. They let the skin heal itself from the inside out.

The surgeon said that she looks good, and there were no leaks in her bowel. They washed her out again, and plan to take her back into surgery tomorrow (10/12) and possibly Monday unless they are able to close her up completely tomorrow. He said that her blood is now similar to that of a regular, bad, ICU patient instead being the sickest in the ICU. Her breathing tube will likely come out towards the end of next week. Onward and upward!!!

P.S. She is down to 202 lbs. It's quite a weight loss program that can bring you down 18 pounds in one day!

Surgery Tomorrow?

2008-10-10T12:28:00.000-07:00

I spoke with the ICU surgeon this morning. He thinks they may be able to go in tomorrow (10/11) to begin stitching up her belly. He said that she seems to be draining the fluids fast enough that he will be able to begin mending her wound. They may still wait until Sunday or they may operate on both Saturday and Sunday (or possibly Saturday and Monday).

During her surgery yesterday they inserted a feeding tube through her nose and down into her stomach. However, they were only able to get it to the bottom of the stomach when it needs to go about a foot farther so it reaches into her small intestine. They will bring an X-ray machine into her room later on today that will show them where the tube is as they snake it down the rest of the way. After it is in place they will give her a little bit of food (something like Ensure) to see how she handles it and to see if the intestine leaks. They said that the food they give her must bypass the stomach so that there is no chance of it coming back up through her esophagus and aspirating into her lungs.

Heather has been moving around more. They took her off the sedative she has been taking. As a result she rolled her head around a lot and grimaced while chewing on her air tube. The doctors want to maintain a fine line between Heather being sedated enough that she doesn't thrash around and hurt herself or upset her wounds and being "awake" enough that she can come out of the sedation as soon as possible. Therefore, when the doctors saw the way she has been rolling around, they sedated her more. She is sleeping again. When she was off the sedation, she would respond minimally to me (i.e., She would noticeably blink when I said, "Heather, blink if you can hear me.").

Heather has what looks like a deep gash in her thigh, where they cut her open to take a biopsy of her leg when all the red sores were beginning to form. It looks quite bad, so I asked how they will treat it. They said that the cut isn't as bad as it looks. She was so swollen with fluids when I first saw the cut, that it made it look much worse than it is. The doctors said that when the swelling goes down, the cut will easily heal itself.

A Little Bit of Movement

2008-10-10T08:56:00.000-07:00

Heather seemed to do well overnight. Her vital signs are holding where they have been (eg., heart rate = 85-95, blood pressure right around 125/75, oxygen level that they are giving her = 40% [this is as low as they will go while she is on the breathing tube], pressure in lungs after exhaling = 5.0 [They want it at between 4 and 5. This is down from 8 last night.]. She is down to 5 IV pumps (from 13). She lost three liters of fluid last night and is rapidly losing more; however, I found out she still weighs 220 lbs. I can't imagine what she must have weighed at her most bloated!

As they have taken her off the paralytic and sedatives, she has begun to move a little. She occasionally wiggles her head or feet and grimaces a lot. For a while this morning she seemed to be trying to chew through her air tube. I can't imagine that it is very comfortable. The nurse came in and raised her pain medication level, and she seemed to calm right back down. They want her to wake up and be able to respond to commands.

Talked to the Surgeon

2008-10-09T12:50:00.000-07:00

I talked to the surgeon (actually his resident), and he said that the surgery went really well. They stapled her intestine back together and did not see any other problems in her abdomen while they were in there. He said that her next surgery will be on Sunday, when they take her in to begin sewing up her belly. He said that they will only sew her up a little at a time and can only begin doing so after she has lost all of the excess fluid that has build up in her body. So, they are currently working on getting all that fluid out. I can already see that those efforts are working, as her face looks more and more like the woman I remember as my wife.

The surgeon said there are a number of ways they can go about closing up her abdomen. They may just stitch her up, but they may sew a velcro-like material to either side of the cut and slowly velcro her together. If they can use stitches, staples, and velcro it seems like a zipper might be handy as well :).

There is still always the possibility for complications (eg., abscesses, hernias, other infection, etc.), but she is really doing well. Even since my last post they have taken her off several of the supports she has been on and have lowered others. She will probably "wake up" in the next day or two. It will be interesting to see how she responds to that. The surgeon told me that she has really "turned the corner." He explained that when she first came to the ICU, she was the sickest person in the ICU (That's saying something for a hospital that has the sickest patients in the region!). He also explained that "turning the corner" means that her condition is still serious, but that instead of worrying about whether she will survive through the night or not, they worry about much more routine matters that they treat with regularity here in the ICU. Hallelujah!

Out of Surgery

2008-10-09T09:12:00.000-07:00

Heather is out of surgery. We haven't talked with the surgeons yet (apparently they tried to find us, but we were in the wrong waiting room). They will find us later to give us the full scoop, but from what I can see (sitting next to her) and from what the nurse has told me she is doing really well. In fact, she is doing better than she was last night. She looks more like herself than ever (i.e., the swelling is going down), her heart rate is at 89 (It hasn't been below 110 in days), her blood pressure is at 125/74 (normal is 120/80), she is not taking any heart medications, and they are only giving her 40% oxygen.

All I know about the surgery is that they did reconnect her bowel and they washed out her abdomen again. I will try to post again when I know more, but I'm thrilled with the news I'm getting!!!!

Surgery Today

2008-10-09T06:52:00.000-07:00

Heather went into surgery this morning at 7:30am. They will be reconnecting her intestine. After I posted yesterday Heather continued to do really well. She improved in every way. They took her off all the medications that were supporting her heart, and her heart continued to perform really well through the night. Her blood pressure has been around 105/65, and her heart rate was in the 110s. They reduced her oxygen level to 50% (from 80% the day before), and the pressure in her lungs after exhaling came down to 10 (from 16 the day before). Her liver is performing better, and her kidneys continue to perform well. On Tuesday night they were using 13 different IV pumps, and now they are using only 7. Her white blood cell count was much higher yesterday than it has been. They are only using one antibiotic (they were using 4). They are continually reducing the amount of fluids they give her. Basically she is doing better in almost every way.

They expect that she will have some set backs in her progress after the surgery, but they still plan to slowly bring her out of the paralysis and the sedatives after the surgery is over. They will wash her insides out again (Dr. Hatasaka told me last night that during the first ICU surgery they used 12 liters to wash out her abdomen. He also explained that they pour the liquid in, kind of slosh it around, and then suck it out.).

I spent about 1/2 hour with Dr. Hatasaka again last night. He mostly just explained all the progress she is making that I have discussed above. He said that the OB/GYN Department will be having their 2-hour conference today (about 30 doctors will attend) where they will be discussing Heather's case.

I wish I could remember everything I hear, so I could keep you all informed, but it comes fast and furious. Thank you all for your concern and prayers. She really needs them this morning as she is in surgery and recovering from it.

Developments

2008-10-08T12:35:00.000-07:00

Monday morning (10/06) at 3am the ICU called to ask for consent to put breathing tubes into her lungs because they were filling with fluid. They called again at 7am to ask for consent to take her back into surgery because she was not responding, and they feared that there may be additional infection or an addition perforation in her bowel. This, of course, was extremely upsetting.

Since that point her progress has been very slight and tenuous. We have consistently worried that she won't be able to recover. Since Tuesday she has required less medication, less breathing support, less fluid, etc. This has begun to feel encouraging; however, her progress is very slow.

A burn specialist looked at the sores/damage to her legs and said that she will likely require skin grafts, but that her condition could be much worse (the doctor said that if it extended to her hands and feet it often requires amputation).

The ICU doctors say that she is doing much better. Her heart rate is down (from the 140s to the 110s), the oxygen they need to give her is down from 80% to 60%, the pressure in her lungs after she expels air is down from 16 to 12 (lower is better), the amount of fluids they are feeding into her is down about 1 liter overnight, her ph has been quite acidic and has returned to normal, etc.

The surgeons plan to take her into surgery again tomorrow morning to reconnect her intestines, barring any down-turns in her condition. They will also insert a feeding tube at that time. They will not begin feeding her through that tube for 24 hours and will watch for leaks in her intestine for 5 days. Unless her condition is significantly worse after the surgery tomorrow, they will try to take her off the medications that keep her paralyzed and will try to bring her back to consciousness.

They will not sew her belly up until the swelling, caused by the tremendous amounts of fluids they have pumped into her body, goes down. They said that when the body stabilizes the fluids actually come out quite quickly. When they do sew her up, it will likely involve several surgeries in which they will sew up either end of the cut a little bit at a time.

I have been impressed with the medical staff here in the University of Utah Hospital. As a teaching hospital there are always dozens of doctors attending to Heather's needs and consulting with each other on how best to treat her. They have been very kind and considerate of my needs for information. It is shocking to me how much time and caring they offer to me.

Heather's OB/GYN doctor (Harry Hatasaka) and all of his department are extremely concerned about this situation and have been surprisingly attentive to what is going on. Dr. Hatasaka visits Heather at least twice per day. He spent 1/2 hour talking with me last night. Heather has multiple monitors that track everything that her body is doing. All the doctors in the hospital have access to this data. Dr. Hatasaka said that he practically has her numbers as his computer desktop. This was very evident when another doctor came in as we were talking and Dr. Hatasaka spouted all of her data trends for the day. He also explained that he has been so concentrated on her situation and how it happened that he went the wrong way while driving home the night before. He said that the OB/GYN Department will be having one of the biggest conferences ever today to discuss Heather's case.

We are pleased with her improvement. Thank you for your prayers and concern. Please keep them coming!!!

The History

2008-10-08T07:38:00.000-07:00

Based on what I (Mark) remember, this is what has gone on with Heather:

Heather went in for a hysterectomy on Tuesday (09/30). The surgery went well, and there were no complications initially. The day after surgery went relatively well, and she was sleeping and feeling okay.

However, following surgeries such as this, people often take a day or two to get their bowels working again. When the bowel is moved around during surgery, it can get irritated. This can make it spasm irregularly and disrupt the usual coordination of muscle contractions that are required for peristalsis to take place. As a result, gas cannot move through the digestive system, and it builds up and often causes significant pain. This was the case for Heather.

Her belly became huge and bloated with gas. Everything was so swollen that her lungs were compressed and she had trouble breathing, particularly when lying down. She was quite miserable for several days. When her bowel did not recover as it should, the doctors became increasing worried. They ended up inserting a NG tube that went in through her nose, down her throat, and into her stomach so that they could relieve some of the intense pressure she was experiencing. They immediately drained 1.5 liters of bile from her esophagus and stomach (there was significant risk that if she did not get that drained off, it would begin to go into her lungs), and she continued to have significant amounts of bile sucked out over time.

With this bile drained off, she felt immediate relief and was able to get the first sleep she had had in days. However, this relief was short-lived and the pressure began to build up again. She felt tremendous pain on the right side of her chest, over her right shoulder, and down her right shoulder blade to her ribs. This turned out to be referred pain, probably from the gas and other pressures in her abdomen and under her diaphragm. This pain made it extremely difficult for her to breath.

Sleep was impossible and, not having eaten or slept for multiple days, she began to be very weak and delirious. The doctors were baffled by what was going on and performed multitudinous tests to try to figure it out. After an extremely miserable night, on Sunday morning (10/05) her heart rate was extremely high (135-155), she was having a terrible time breathing, and there were several worrisome test results and vital signs. So, the doctors decided that she needed to go to ICU and should get another CT scan to find out what was happening in her bowels.

They wheeled her down to the ICU and immediately decided that she need to be on a ventilator because her breathing was so compromised. She has been under anesthesia ever since. They wanted to continue with the CT scan, but needed to inject the bowel with tracer dyes which would take a couple of hours to get in place.

My dad had come up to support me on Sunday morning, because after spending several sleepless nights with Heather in the hospital, I was a little fragile myself. (We gave her a blessing early that morning.). While we waited for the CT scan, my dad and I went to get something to eat. As we were returning, the doctors called saying they needed me to sign consent forms for them to go into surgery immediately. When we arrived back at the ICU, the surgeons informed us that, though they could not be completely sure without operating, it appeared that Heather had some kind of flesh-eating bacteria that was quickly destroying her body, and that they needed to operate immediately to try to stop its progress. They informed us that she would likely lose her bowels, large sections of her legs (if not her legs completely), her buttocks, and other organs in the abdominal cavity if she survived at all (which was not likely). They said that her chances of surviving this were very small. They did explain that it may be a perforated bowel, but that it seemed more likely to be the flesh-eating bacteria based on the signs they were seeing in the skin on her legs and belly (deep red marks that seemed to be growing very quickly). This of course was a tremendous and devastating shock.

We spent the next three or four hours waiting to find out that it did not appear to be the flesh-eating type bacteria that they had feared, but that she had suffered a perforated bowel and resulting sepsis. This was tremendously relieving news, but the doctors pointed out that she was still extremely and critically sick and that there was a long way to go for her to be "out of the woods." When the bowel is perforated, the contents of the bowel leak into the gut, resulting in systemic infection that enters the blood and sends the entire body into a reactive shock state. The body tries to protect itself by shutting down cells, etc. The surgeons informed us that they were able to clean out the infection or treat it with antibiotics (about four of them), but that the body continues to have the reaction even after the threat of the infection is gone. This is extremely dangerous because the body is then fighting and damaging itself even though there is no real reason to do so anymore.

The doctors are unsure what caused the perforation in her bowel. They said it was star-shaped rather than a slit, suggesting that it burst rather than being cut. There are many possibilities of why this may have occurred, including that there may have been some scar tissue on the bowel from a previous surgery that weakened it or that the pressure in her abdomen burst the bowel at a weak spot. During the surgery they cut out the perforated portion and three other sections that were dark or gray, for a total of about 24 inches of the 27ish feet of intestine. They left the intestine in three separate sections, which will remain disconnected until she is more stabilized. They won't put them together until she is more stable because otherwise the connections would not heal and would result in a greater risk of infection.

The surgeons also informed us that they will be keeping her abdomen open (They put towels in the cavity and cover it with a shrink-wrap type bandage that they call a vac-pac.). This allows them to take her in repeatedly for additional surgeries or to clean out additional infection that may arise without having to cut her back open every time.

Heather also has ugly red blotches that are bleeding and blistering on her legs. They cover nearly all the skin from just below her waist to her knees. The skin is dead or seriously injured in these areas from toxins secreted from the bacteria or from tiny clots in her capillaries. It is probably the most visually disturbing result of this whole process, but the doctors see it as a low priority for her recovery.

One of the effects of the sepsis is that the cells and connections between them become porous, causing them to leak everywhere. To compensate for this the doctors have pumped massive amounts of fluids into her body (multiple liters each hour). As a result she has become incredibly bloated. It appears as though she has gained over 200 pounds and is pregnant as well. Her face is not recognizable.

So, since Sunday the doctors have been working feverishly to maintain her body and organs, until this reactive process turns itself around. This includes significant medications and observation of all her major organs to make sure they are not failing or functioning improperly. Her situation has been extremely serious (eg., On Tuesday, one of the ICU doctors said, "To be honest, yesterday I wasn't sure that we were going to be able to stay ahead of it.").

Slowly, slowly Heather has been improving ever since. The doctors seem much more optimistic today (10/08). She still has a long, long way to go, but she seems to be either holding steady or improving in every way.