Grafting round 4

Last week, when Addi was sedated for her fill, the Doctor came out when he was done, sat down, and said, "I'm concerned."  This is something we had never heard before.  Even when Addi's leg was oozing and smelled really bad, the doctor was pretty optomistic about the whole thing.  Addi's skin was getting very thin, and he was worried about being able to wait until surgery day to get the maximum amount of skin.  I took Addi in this week, just to have it checked, and Dr. Siddiqi said to wait until Friday would be fine.  Although, he did say that the skin was very thin and ready to pop. 

Will and Addi in the pre-op waiting room.  Will was trying to talk Addi into sharing the video game controller.  She wasn't listening.

Fast forward to today - surgery day.  The scheduled 90 minute surgery was actually 2 1/2 hours long.  When we finally saw the doctor, he explained that the skin on Addi's chest was not useable when he took it off.  It was just too thin from being stretched too many times.  But, he said that the expander on her leg provided a lot of skin (whatever that means...). 

So, we were able to come home tonight, rather than spend the night, which is what we were planning on.  This is because only a partial graft was done rather than the full thickness graft that we were planning on.  She has a drain in her leg, and a new expander in her side, using new skin. 

The new expander is pretty big, he said that it will hold 440ccs of liquid, and he started the expansion with 40ccs today, while she was sedated.  We will do sedated fills starting next week for then next approximately 4 weeks, then do another grafting surgery. 

Just one cute thing from the hospital...we have been there so much that the nurses recognize us.  There is a child-life specialist that has become especially fond of Addi.  The pre-op nurse told us that MaryAnn had been looking for Addi, making sure she knew what time her surgery was and when she would be checking in.  As soon as we got into the pre-op waiting room, MaryAnn was right there with a new hospital buddy.  She told us that she had put aside a princess costume just for Addi, and went to get it.  She came back with the full costume:  cinderella dress, shoes, crown, and wand.  Unfortunately, the dress was too little, but that didn't deter MaryAnn.  She just went and got another outfit.  Pink this time, with a new wand, crown, and a tutu.  She let Addi keep everything except the dress from the other costume as well.  MaryAnn also told us thast she had asked to be paged when they were ready to take Addi back to surgery so that she could go into the OR with her and make sure she was taken care of. 

Addi after surgery.  She was a little sleepy this time. 

Now at home, Addi has watched a few movies, but is complaining that her eye hurts of all things.  We have tried the Visine, and Benedryl, and a call back up to the hospital is the next thing in order. 

Popped

Last Saturday, we were showing off Addi's bubbles at a family party. I noticed that the one on the right side of her chest was starting to look a little abnormal. The incision was turning purple, which generally means that the skin is too thin, not a problem at the stage that we were at, but definitely something to keep an eye on.


By Sunday morning, the purple area was spreading and we were getting a little more concerned. Time to email the doctor. He got these pictures:

And then we waited. I was hoping for a response by Monday night, knowing that he would spend all day on Monday in surgery. This was exactly what this same side did last year, when we lost all of the skin from that expander.

Not hearing anything, I figured that he would look at the expander when we went in on Wednesday for her next fill and tried not to be too worried, all the while feeling that we were going to loose that skin. Well, as we were putting our Halloween decorations outside on Monday night, Addi was jumping around and tripped. She landed on her chest, and my heart sunk. I knew we were in trouble. We ran her into the house, only to find a small spot of blood on her shirt. Taking her shirt off, I expected to find a huge mess of blood, instead, I found this:

For a minute, we thought that the huge black spot was blood, but when we tried to blot it dry, the cloth came away clean. Nope, not blood: expander - sticking through her incision, which had popped open when she fell. We had a decision to make: take Addi to the emergency room to be looked at, or wait to get an appointment with the doctor. So, we called the doctor's office, got the number for the on call plastic surgeon and called him. He was very helpful, told us to cover the expander with gauze and get an appointment for Tuesday morning.

I called and left a message for the nurse to call, with no response on Tuesday morning, I sent her an email - no response. I waited until about 10:30 and called again, only to find out that the nurse I was trying to reach was out of town at a conference. So that explains it. They don't normally make appointments for the same day, but when I told the person that I talked to what I needed, she asked if we could be there in an hour - and we were on our way.

As we walked in to the clinic at Primary Children's, Dr. Siddiqi was walking down the hall. He stopped us with, "What happened?" And I answered with a simple, "She popped." His response, "Well, it's a good thing she's on the schedule for surgery tomorrow. I'll take a look at and see what we can do." He had no idea that we had been trying to get in contact with him, or that she was having a problem.

After waiting a bit, the plastic surgeon that I talked to the night before came in and took a look. He said that he thought we may be able to salvage at least some of the expanded skin. Dr. Siddiqi thought the same thing, and he again covered the hole and sent us home.

Again, the nurses recognized us - the check-in nurse, who said, "I think I checked her in 2 weeks ago." The nurse that came with her versed in pre-op, she was the new nurse last week, and let us know, the surgery nurse, who commented that she was the nurse when Addi's expanders had been placed 2 weeks ago, the other pre-op nurses, who all waved to Addi and told her they would see her next week as she was wheeled in to surgery. Even the receptionist in the surgery waiting room laughed when I told her I was back. She asked how many more times I had to do this. I told her too many, but by now, I think I deserve my own parking spot. She agreed.

So, today, for Addi's sedated fill appointment, that popped expander had to come out. By the time the expander came out, the skin retracted, some had to be excised due to slight infection starting, and there wasn't much left. He opted not to put her through the pain of a graft for that little amount of skin, and, thus, we lost the expanded skin. And it's ok. Addi has two good expanders still - they were filled more today as well, I fully agree with the doctors decision. The grafting process hurts. No point doing it more than we have to.

Recovery was not a fun experience this time. Addi was completely inconsolable, even after I had the nurse move the pulse/oxygen monitor from off of the thumb that she sucks, and had them use her own blanket. It worked for a minute, but not long. She kept telling me that she wanted it off and pointing to the IV. The nurse told her that if she would drink some apple juice, she would take the IV out, so drink she did - guzzled the whole cup. Finally, she calmed down enough to let me know that she had to us the bathroom, and we were quickly ushered in (thank goodness! I've been peed on in this process before). And after that, she was a lot more calm, even refusing to leave until the show that she was watching on TV was over. Ahhh my little couch potato!

She came home with a big bandage on her chest, stitches, a bandage over her IV hole that she won't let me touch, and a drain in her side. Next week, the last fill for the two remaining expanders, and drain removal. Fortunately, all done while Addi is sedated.

Fill number 2

Last week, when Addi went in for her fills, it was business as usual. Outpatient check in - normal. Pre-op vitals - normal, except that it was the same nurse as the week before, and she recognized us. We started up a friendly conversation, then she took us to the pre-op waiting room, and said, "see you next week." The child-life specialists came and visited us, and again recognized us - same general conversation. We had an anestheseologist that we had has previously, but not in the last 4 weeks, just one that I recognized, and I assurred him that he had done fabulously with Addi. I waited in the surgery waiting room, as I normally do, and was only there about 25 minutes when the phone rang, and they called for me. The doctor hadn't even been in to let me know how things had gone - no worries, I knew we were on the same page. Tolerable PACU time, with the same nurse as the week before. She recognized us as well, and took great care of Addison. She walked us over to the recovery area for another short stay, saying when she left, "See you next week, Addi." New nurse in recovery- there has to be one every visit. Addi kept insisting that it was time to go home, but wouldn't drink anything. No drink, no release. I finally told her that as soon as her apple juice was gone, we could go. So, Addi picked up her cup and downed the whole cup. She handed it back to me and said, "I want to go home now." About 10 minutes later, we were on our way. Addi complained most of the rest of the day that her bubbles hurt, but a little motrin worked on that. And by Thursday, she was back to normal. Another fill a success, but is it a good thing that they are starting to recognize us?

A minor stumbling block

Yesterday, we had an appointment to have Addi's "bubbles" filled for the first time. Will took the afternoon off so that he could be there with Addi. She was so happy to be seeing Dr. Siddiqi, until the resident came in instead. He was nice enough, about twice the size of Dr. Siddiqi, though. And she freaked. She didn't want him touching her. He felt around for her ports, and tickled her feet, trying to win her over, and she relaxed. A little. When the assistant brought in the equipment necessary for filling the expanders, she tensed right back up.


So, we got the expander in her leg expanded with 20cc of saline, and Dr. Siddiqi came in. He stopped the resident right there, looked at us, and asked how we felt about sedating her while they did the fill. Sounds good to me. We got on the schedule for this morning, first thing, and had to be at the hospital at 6:45 for her 8:15 sedation. I wasn't even aware that there were people out that early.

Perfect sedation, excellent fill, and we came home with the expanders in her chest filled with 40cc in one expander and 45cc in the other. That is double the amount that he even tries with her awake. The doctor was pretty happy with how much he was able to fill - not sure if this will speed up the process, get us more skin, or pop the expanders, we will have to wait and see.
We ran into a slight problem in the recovery room, however. Addi woke up very quickly and was not on any pain meds, so she was looking for me immediately. The nurse called to the waiting room and stressed that I needed to get in there immediately, and we ran (walked fast, really, but I had a hard time keeping up with the waiting room facilitator). So, after a lot of crying, a dose of tylenol for pain, lots of juice, and a bit of slushee, we were allowed to leave. Addi refused to let me carry her out, she had to walk - and I forgot her shoes - until we got half way to the elevators, then she stopped and looked at me. I picked her up and carried her the rest of the way out to the car.
She cried all morning long. That is a lot of expansion, and her skin was so tight. Fortunately, I still have the pain meds from the surgery 2 weeks ago, and I used it. She is doing better tonight, a little tender, and very moody.

Next fill: scheduled for sedation next Wednesday.

I've forgotten what number this is

Surgery for Addison, that is. I think that we decided that it was surgery number 7, the first of 2 in round 4, and the 9th time that she has been sedated in her short 3 1/2 years.

Wednesday was this surgery. It was for tissue expander insertion. The doctor placed two expanders back in her chest, and one in the back of her leg. Here's how it went:

We were scheduled for early afternoon surgery, and needed to be at the hospital about noon. So, we had a normal morning: going to the gym, etc, minus the breakfast, which she was not allowed to have. I didn't keep from Addi that she was going to see Dr. Siddiqi that afternoon, I even let her pick out her own new pajamas and after surgery toy. Addi told me that she was not excited to see Dr. Siddiqi, he was going to hurt her. I think she may be getting the hang of this surgery thing.

When we got to the hospital, we were the only ones in the registration waiting room, and got through fairly quickly, but when we got to pre-op, we found several other kids who had been waiting there since early morning, like 8:00 am early. Poor kids! This was not a great sign for us either. However, Dr. Siddiqi came out at our appointed time and talked to us for a minute. He indicated that they were just cleaning the operating room, and it shouldn't be too long. I am not sure what happened between the time that he talked to us, and 10 minutes later, when the nurse came and told us that it would be 45 minutes before Addi would be taken back. She tried to blame it on the doctor, but I am not sure that is the case. I am instead choosing to believe that they needed the room for one of those other kids who had been waiting so much longer. They needed to go first, and I had no problem waiting.

So, after our wait, the nurse came over with a nasal medication for Addi. Apparently, the anesthesiologist forgot to call and tell them to give her the oral Versed, and it was time, so she instead got the nasal Versed, which works much faster. They took us into one of the registration rooms to give her the mist, knowing that she didn't love that stuff, and she met their expectations: screaming from the time it was given to her, until they took her back to surgery.


The surgery itself was routine, just over 2 hours to place 3 expanders. When Dr. Siddiqi came out of surgery, he suggested that we might want to sedate Addi for her weekly fills. We have all of the fills scheduled in his office, and will do the first one there. If she reacts well, we will continue to go there, if not, we will switch to the rapid treatment unit to be sedated once a week. We had talked to the doctor, and he assured us that we could go home, provided that Addi's pain was controlled with Lortab, she was eating, and went to the bathroom. So, I went back to the recovery room, for like 5 minutes, then they moved us to a room, still assuring that as soon as Addi met the criteria, we could go home. This was about 6:00 pm.

Pain management was not a problem. We always come home with Lortab and an antibiotic. Eating? Check - Addi had yogurt, some banana, Slurpee, and plenty of apple juice. We kept asking Addi if she needed to go to the bathroom, and she kept telling us no. Periodically, she would point to her IV - she hates those things - and want it out. I told her that if she went potty, they would take it out and we could go home. Nothing doing. Finally, we just put her on the toilet. She refused to perform.

After a while, our room started to get the intense smell of diesel exhaust. Smelling so strong that it started to make me a little sick, and cause a headache. About the time that I was heading out of the room to let them know that the room had a problem, the charge nurse came in to make sure that we really thought we were going home that night. My response, "Yep, it smells like diesel exhaust in here, and I'm not spending the night. Addison will eventually use the bathroom, and when that happens, I don't care what time it is, we are leaving." She kindly explained that the Life Flight helicopter lands right on top of the room that we were in, and when they have frequent landings and take-offs, it smells like jet fuel. Hmmmm. Good to know. I think that is dangerous to the patients.

Anyway, about 10:00 pm, after about 4 trips to the little girl's room, Addi finally told me that she needed to go pee, and pee she did! That little hat thingy was pretty full. We alerted the nurse immediately, and got her dressed. One set of vital signs later, and we were out of there!

Addi fell asleep on the way home, and slept in my bed that night. She only complained on Thursday a couple of times that her tummy hurt, we stayed right on that Lortab - which she doesn't love either. She got her waffle fed to her for breakfast, and I figured out a pretty sweet set-up for her lunch and dinner:

That's my laptop cushion, but doubled as a bed tray for her, and worked fabulous! By Thursday afternoon, Addi decided that she wanted to get up and walk around. It was at that point that she figured out that she had a "bubble" in her leg as well. She looked at the stitches, asked me what it was, and when I explained that she had a bubble there as well, she tapped the bubble to make it jiggle, saying, "Hey, yeah, there is a bubble there!" Guess that one didn't hurt a bit.

She is pretty bruised since the surgery, but isn't feeling any pain. Addi has taken to asking everyone that stops by if they want to see her bubbles -

the left one

The right one

And tonight, as we were watching The Little Mermaid II for like the 12th time since Wednesday, this is the pose that Addi found most comfortable:

And just a "bubble" side note that I found humorous: A few days ago, I was shopping for bras for one of my older girls. I put some in the basked where Addi was sitting, and she immediately picked them up, and said, "you put it around you like this, then you put your bubbles right here." Yep, she was putting on the bra, to her every girls has bubbles.

No more bandages = a little freaking out

Tuesday, March 30, 2010

After 2 weeks of daily bandage changes, some better than others, we had an appointment to have the doctor check her wound progress. It never fails, she was asleep by the time we made it to the hospital. We have been there so often, the wound nurse didn't even have us check in, just directed us back to a room. Before starting to unwrap Addi's bandages, the nurse paged her doctor to get him on his way over. His response was that he was about an hour behind schedule, could we go get some lunch, and come back. The nurse was very apologetic - I think she thought that I was going to be mad about waiting, but we are used to it, and the doctor is worth it.


So I woke Addi up and took her down to the cafeteria to get some lunch. When we came back, we again went right in, the nurse unwrapped Addi's leg, and paged the doctor. This time, we came pretty quickly, and Addi didn't even notice the wait. She was busy playing with toys (bless those child-life specialists!). When the doctor came in, his comment was, "that looks much better." My reponse, "you were worried, weren't you?" He actually admitted that he was worried because it was weeping so bad before and had such a foul smell, but it looked good this time.

Addi looked at the doctor and had this conversation: "Dr. Idiqqi."
Doc - "Yes"
Addi - "My leg is scratchy." (She has been itching pretty bad, a sign of healing.)
How cute is that? No fear of the doctor, even after everything she has been through.

Dr. Siddiqi suggested that we leave the bandages off, just put some neosporin on the parts that aren't quite healed, allowing the skin to dry out a little more. The nurse suggested some lotion that they often put on wound patients that would keep her from being itchy. She also just placed a gauze pad over the donation site to keep the neosporin off of her clothes and car seat on the way home. That being done, we were ready to leave. Addi refused to walk. She had gotten so used to the bandages being on for so long, it hurt her to walk. She cried all the way home, just a little, saying that it hurt. When I pulled off the gauze on the donor site, she freaked out! It was stuck in the wound and made it bleed a bit. As I was putting more neosporin on it, Addi started to squirm, crying, until she finally peed all over me. So, off to the bath she went, her first real one in 7 weeks. She didn't enjoy it at all, and has whined most of the evening. She is finally calmed down, ready for bed, and we are hoping for healing progress in the coming week.

And what does it look like?


 
 
 
 
 
 
 
 
 
 

Bandage Change

March 16, 2010

Last week after Addi had her bandage changed while under sedation, we were given strict instructions not to touch the bandage - meaning DO NOT unwrap that leg. We made our appointments for the wound clinic to change the bandage for the next week, with the doctor taking a quick peek.

She, of course, fell asleep on the way up, and was out. Didn't even stir when we moved her. The wound nurse was so sweet, trying to let her sleep as long as possible. She must have known that she was in for a treat!


Finally, the doctor was on his way over from his clinic, so it was time to wake the beast and get that leg unwrapped. As soon as we moved her over to the exam bed and started messing with her leg, Addi woke up and started squirming. By the time the ace bandages came off, the squirming turned into full screaming. Which got louder the more bandage came off. Finally, when there were no bandages left, the screaming was continuing, and Addi had started to kick. She was in pain.

We have a child-life specialist that comes in and plays with Addi while they are doing things like this. The poor specialist pulled out every trick that she had, the toys that Addi usually likes, the ones she hadn't seen before, the tried and true bubbles, all to no avail. The screaming continued, getting louder as time passed.

The doctor came in and looked the leg over, noticed the horrible smell coming from her bandages (it just smells like decay - there are no other words to describe it), and asked how many times we had changed the bandage since last week...Umm...none, on your orders. I love that question. He then gave the instructions to the wound nurse to clean both areas well, completely cover it with neosporin, and bandage it back up. He then asked us to change the bandage everyday, so that the smell would stay gone, and heal cleanly. No problem, except that taking that bandage off just made her scream like we were killing her. The nurse and doctor both left the room, and a student nurse came in to observe. I was sitting on the table, Will was trying to keep Addi's legs still. I noticed a staple at the bottom of her new skin...one that should have been removed last week, but they get missed sometimes.

The nurse came back in, I showed her the staple, and she left the room again to check with the doctor. She came back a few minutes later with the special scissors that they use to take staples out. She then proceeded to completely cover both areas of her leg with neosporin and the oil emulsion gauze, then regular gauze.

Addi's old ace bandages were pretty stinky, and dirty, so we asked the nurse if we could have new ones put on. She, of course, hadn't brought any with her, so she had to run back to the office to get some. The child-life specialist left also to get different toys. While they were gone, I put Addi on my lap and tried to calm her down, which she started to do, to a point, but was still squirming a bit, which I assumed was from pain. Wrong! All of the sudden, my lap got warm and wet. You guessed it, she needed to go to the bathroom, but was in too much pain to tell me so that I could understand. So, there we were, Will and I trying to clean up, and the poor student nurse, not knowing what to do (I think she may be rethinking her choice of career fields at this point.). The child-life specialist peeked in, saw our dilema and said she would be right back with clean clothes for both of us. I didn't really care about me, but Addi was soaked and couldn't leave with nothing at all on. While we were taking her wet clothes off, I noticed that, you guessed it, the bandages were wet. So all of the work that had been done over the last hour was wasted. We had to start all over. The nurse came back in, saw our predicament, said "That sucks." and left to get some things to clean up the mess and start over. I'm sure she has kids.

So, after a greuling work-out holding Addi down, cleaning up an exam room, getting a t-shirt for Addi and a pair of sweats for me, we were finally ready to go home. Addi was much calmer once we got those ace bandages on her leg, and we knew she was completely calm when Will picked her up and got a look with the additude of "Seriously?" coming from her mouth.

We did have to make a stop at the give shop to get her a balloon, and at that point, I probably would have given her anything that she asked for. Poor kid. Hopefully, changing bandages at home won't be so traumatic for her and we can all make it.

And now for the pictures (again, they may not be pretty for those that don't like this stuff):



 
 
 
 
 
 
 
Before, I said that I thought they had taken skin from off of her bum cheek, but I was wrong. They just had her taped up that far to keep the bandage in place. It's not nearly as bit of an area as I thought, but still pretty big.