Thank You

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!

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!

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?

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

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

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

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

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!

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

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

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

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

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

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

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"

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

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

Heather wanted to share the following with you all:

Stronger Than Ever

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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.

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

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

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

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

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

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

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!!!

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

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!!!!

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.