These things will probably always be an issue

Addison is covered in satellites, moles of varying size, shape and color.  We have had the doctors look her over frequently, and feel pretty confident that they are all fine for now.  However, it was about a year ago (yes, I am that behind - oops!), that Addi came to me telling me some of the bumps on her inner thigh were bothering her.  She said they itched, and hurt.  So I checked them out - and had a mini heart attack.  It happens to the best of us. :) Two of her satellites were raised, and surrounded by red.

A call to the dermatologist later, and we were on our way to be checked out the same day.  That never happens - those doctors are in demand!  Dr. Vanderhooft looked Addi over carefully and came away with good news.  Something had gotten to the satellites and was irritating them.  Nothing to be overly concerned about.  She gave us some hydrocortisone cream to put on the spots to calm them down, and we talked about other options.

Still in my freak out state of mind, I told the doctor that I wanted them off, and she agreed that if it would make us feel better, that is the route we should go.  Dr.  Siddiqi, our amazing plastic surgeon agreed a few weeks later, and Addison was scheduled for surgery number 30.

Yes, Dr. Vanderhooft could have numbed Addi and punched out the satellites in question, but she does so much better with Dr. Siddiqi.  They have a relationship, and she trusts him.

Since that time, we have been more diligent in checking her over frequently for any changes.  I guess this is something that will always be an issue.  Nothing we can do about it.  I probably wouldn't freak out as bad if we were in that situation again, but those babies come off as soon as they start to bug her.

Sorry, no picture - I can't find them. :'(

8 months later

Addison's leg has continued to heal for the last little while.  Here is how it looks today:

She's so proud to show it off!

The end of the line

There comes a point in the removal process when the decision needs to be made as to whether it is feasible to continue.  We are at that point.  Remember, Dr. Siddiqi is not comfortable grafting her toes and the very bottom of Addi's foot, he was recommending laser lightening so that we could monitor it for changes easier.

About two months ago, we saw Dr. Siddiqi, and he again said laser was the way to go, but he (read: Assistant Lindsay) wanted to check and see what laser would be best.  So we waited.  Lindsay was very good to update us on what she had found out, and these were our options:

• Primary Children's has a CO2 laser, but Dr. Siddiqi didn't feel it would penetrate deep enough on Addi.
• The University of Utah has other lasers, but the one that is best (a Qten laser that is usually used to remove tattoos) was broken, beyond repair, and was donated by the SLPD Gang Unit anyway, so the prospects of it being replaced are slim.
• Rent the Qten laser from the laser rental company.  But the laser is in California, and the cost to transport it every 6 weeks would be astronomical, and probably not covered by the insurance company.

Lindsay suggested that we look into going to an actual aesthetic laser center to finish Addi off.  She suggested the only one in Utah, which is located not far (about 10 minutes) from our house.  Yep, they have the laser.  Nope, they don't take any kind of insurance, nor will they even bill insurance.  We would be responsible for the total cost at the time of service, and have to hope for reimbursement.  Not to mention the sedation out of a hospital, on our 4 year old - If they would even sedate.

So, after a great many discussions, we have decided to stop the removal process at this point.  If, when she is older, Addi decides that she would like to have her toes lightened, we will look happily have it done.  I would like to have some scar revision done, but we will wait at least a year to make sure they are all healed.  For now, we have reached the end of the line.

She knows she's different

A while back, Addison started asking when her leg would look like everyone else's.  I told her that she was special and didn't need to look like everyone else.  But I took notice of the fact that she was starting to pick up on the difference between her skin and other kids'.

Addi has now taken it upon herself to answer the questions that people ask.  She was playing with the neighborhood kids, who stopped and asked what was wrong with her leg.  She stated, "It's a birthmark...come on, lets just play."

I'm glad that being different doesn't bug her.  I have noticed through Addi and the comments of other Nevus parents that these kids tend to be opinionated and let things roll off them.

And, I'm glad.

With the amount of surgery that we have been through, and the looks and comments that she has gotten, I'm glad that being different is good.

How's it lookin'

Addi's leg is looking better and better.  We are just waiting for a little bit more to heal.  This is what we are waiting for:

Wanna See?

We are at the "change the bandage everyday, and use these really expensive oil emulsion bandages, and gauze-that-the-insurance-doesn't-cover-because-they-are available-over-the-counter stage" of recovery with Addison.  She has decided this time that she will help, so she does the unwrapping - and does a pretty dang good job of it.

Addi still isn't allowed to walk, but she has figured out how to scoot all over, and crawls around pretty fast.   After some discussion with her pre-school teacher, Addi went back to school last week.  She was a little apprehensive to go.  She was afraid that the other kids would make fun of her.  I assured her that Mrs. Cossa wouldn't let them tease her, so she went, and had a great time.

The pictures on her were taken on Thursday, just one week and one day after surgery.  Since then, the heel portion has started to look worse, so we are having it checked out later today.  Other than that, it really does look good!

And, if you don't want to see the pictures, stop here.  If you would like to see them, scroll down.

The last graft

Addi's expander in her back was so big, and her skin so pliable, that it only took three times to get that thing completely full.  The doc decided to act quickly and get her graft done.  So, we moved it up.  

Because we were squeezed in at the last minute, Addi was the last case for Dr. Siddiqi for the day.  She wasn't scheduled for surgery until 4:25.  She had to go all day without eating.  This also meant that Mary Ann was leaving for the day as we got there.  Good thing for us, she has a friend named Morgan, who was more than willing to sit and play with Addi, and Addi let her go back to the OR to play as well.  No tears at all!

Of course, we had to have the sticker earrings to replace the ones that I took out that morning - which totally ticked her off, buy the way.

Addi waiting for Dr. Siddiqi.  She pretty much had the waiting room to herself.

One last look at her foot.  Most of this is gone, we think, haven't actually seen it.  

Somehow, the stars all aligned, because Dr. Siddiqi was running ahead of schedule.  I don't think that has ever happened before - EVER.  I'm not complaining at all, just pleasantly surprised as Addi walked back to the OR about 35 minutes before she was scheduled to .  

And then Addi messed up the doctor's on time streak for the day (we knew it would happen - 2 hours for her graft isn't enough).  She took just under 3 hours to have the graft done and have her back sewn back up.  She has been telling us since she woke up that her foot itches.  I'm not sure if that is because of the splint she has holding her foot immobile, or her bandage, or just the healing process.  The nurse says that is pretty normal, so we haven't really worried about it, just rubbed the bandage when she complains.  

And even after all that cutting and sewing, Dr. Siddiqi felt that it would be good to send Addi home, rather than keep her overnight in the hospital.  YES!  Addi slept in her own bed, all night long, and was fine.  

Addi isn't allowed to walk until after we see the doctor on Wednesday - he wants to sedate her to change the bandage, take out her drain, and remove her staples.  He is one smart man!

And sitting on the couch one day, Addi took a peek into her bandage, which is open at her toes.  They are still brown, and probably a little more brown than normal due to blood.  She was a bit upset and asked "Hey!  Why are my toes still brown?  Oh that's right, Dr. Siddiqi wants to laser them."  She definitely knows what is going on.

More than a baby bottle

Addi had her first fill of her expander this morning, which always makes for a bit of a stressful day for me. We had to be at the hospital at 8:00. We were a few minutes late...stupid traffic. There just isn't a great way to get to Primary Children's from our house. So we got there, and checked in on their little computer thingy and took our buzzer (like a waiting list buzzer from a restaurant...they just buzz it when they are ready to get the registration done). And we sat down to wait our turn. The other people in the room got registered, and moved on, then more people came and they started to get called. I was getting a little concerned when my phone rang. It was the hospital, asking how close we were...um, right here in your waiting room, where we have been for 30 minutes. They were ready and waiting to take Addi back to surgery. Just then, one of our favorite nurses came and asked if she could go and get Addi weighed, and started on all the initial stuff. Addi went right with her, and I went to get the registration papers signed.


Just as I was walking into the exam room where they had taken Addi, I noticed the nurse taking Addi's earrings out. This is something that has to be done, but always causes her a little stress, so I was just in time. She started sobbing uncontrollably, and I thought we may be in trouble. Our friend Mary Ann was right there, though, with plenty of toys and entertainment to keep Addi happy. She said that she had just gotten back from vacation and had gotten a bunch of toys that she had thought of Addi when she bought.

No Versed this time, Addi walked back to the operating room, jumped up on the table, and played for a minute. Mary Ann said that she just got mildly upset when they brought the mask out, but that she does better and better every time. Which, isn't necessarily a good thing - it means that she has been there way too much!

So, when Dr. Siddiqi came to find me, he had kind of a smirk on his face. We went into the consultation room, and our conversation went something like this:

Doc: "So, how much do you think we got in?"
Me: "Well, you put 60 in the first time, so I would guess somewhere around there."
Doc (grinning): "Higher."
Me: "I'm not sure you could get 100 in there."
Doc (looking rather pleased with himself): "240 ccs. We never would have been able to get that much in the clinic. Her skin was so loose, we just kept filling."

So, that cuts down on the number of fills that she will need to have, we will just take it week by week for now.

If you are keeping track, Addi now has 300ccs of liquid on her back. How much is that exactly? 10.1 ounces. That's more than a baby bottle holds!

And her recovery? When I went back to post-op, she was quietly watching TV. She had a little bit of pain medicine, but was totally calm. She told me when we were waiting to leave that she wanted "Wendy's chicken nuggets, with french fries, ice cream, and chocolate milk with a straw" when we got home. So, she got it. Spoiled girl!

Here we go again

And she's starting to remember.

Addi's custom expander came in this week, remember, she was scheduled for surgery today (March 24), but the Dr. decided to go out of town, so we moved it up one day, and she had it placed yesterday.

I want Addi to feel like she has some control over what happens to her as she gets older, so before we left for the hospital, I sat down with her and asked her if she remembered the medicine that they give before the doctor takes her back to the surgery room. She has fought us in the past about taking it, but I have insisted...it makes getting her under so much easier. When I started asking her about the medicine, Addi got a little apprehensive. And the morning went downhill from there. Addi kept asking if Dr. Siddiqi was going to hurt her, and when she was going to be done with the expanders, although she calls them bubbles.

We had to make a quick stop on the way to the hospital, and Will ran to take care of it. We were waiting in the car, where Addi wouldn't smile, or really even look at me. She was not happy that she was going to see Dr. Siddiqi.

So, when we got to the hospital and got Addi all checked in, she was as cooperative as she normally is. She changed into her hospital pajamas all by herself, and let the nurses to their thing, checking her over. Then the nurse asked if we wanted her to have Versed, and I turned to Addi. I asked her if she wanted the medicine, and got an emphatic "NO." The nurse assured us that we had until about 15 minutes before surgery to change our minds. I told Addi that if she wanted to go back to the operating room with just MaryAnn to help her, that was fine, but if she thought she was going to cry, that we needed to give her the medicine.

MaryAnn, the friendly child-life specialist, who absolutely loves Addi came in just then with a personalized coloring book for Addi, some markers, and a toy, and assured us that she would be happy to go back with Addi. She also got Addi a princess car to drive back, and some wands. We love her!

Dr. Siddiqi was actually running ahead of schedule, and came to talk to us for a few minutes before it was time to take Addi back. He looked her over, told us what exactly he had in mind for the rest of her foot, and then we discussed her toes. I reminded him that he had thought maybe laser would be the best treatment on those, and he still feels that is best. More on that later.

It was quickly time for Addi to go back to the operating room, and she willingly climbed into the princess car, and started driving toward the door. She didn't make a sound. Even after we left her. Mary Ann came and talked to us after Addi was all the way under. She said that is the best Addi has ever done. She was so brave, climbed up on the table by herself, and only whimpered a little when the anesthesiologist put the mask on her. Success!

About an hour later, Dr. Siddiqi came out, surgery complete. He told us that he put about 60ccs of saline in the expander to start, which doesn't mean a whole lot until realize that her first expanders only held about 100ccs. This is one HUGE expander!

We watched movies all evening yesterday, and drugged her up before she went to sleep. This morning, she is doing good, but keeps telling me that her back itches. I am sure it is from the skin stretching so quickly, but it is really sensitive to pressure, so it hurts her when I put lotion on it.

We start expanding in 2 weeks, and have 4 expansions scheduled, although I am not sure we will use all of them. During the grafting surgery, Dr. Siddiqi will also do a little touch-up on the scars on her leg. Then it will be time for the toes. He is talking about a sedated laser treatment every 6 weeks, up to 6 times...do the math. That's 9 months of laser treatments. And probably won't clear her toes up completely, but enough so that if there was any new growth, we would be able to tell.

That's what we are going for after all.

Surgery date moved

Addi went to see the plastic surgeon this week.  He wanted to check on her healing progress, and measure her for her next expander, which, if you remember, was scheduled for March 2.  Her leg is looking SO good.  He is really happy with the way it is working.  Then Dr. Siddiqi measured her back to determine which expander would be best for her.  After looking at the samples of the expanders that are kept on hand, he wasn't satisfied with what was available.  I believe his comment was that they only expand three inches...he wants ten.  Ten inches!  Holy big expander! 

We have done the custom expander in the past.  The ordering/shipping process takes forever, which would push us way into the summer before Addi would be completely out of bandages.  Well, our good friend, Lindsey, the plastic surgery coordinator pulled one out of her bag of tricks once again.  She bypasses the hospital all together, called the manufacturer, faxed the order to them and asked them for the soonest guaranteed date for shipment is. 

The answer: March 21. 

Five weeks. 

And they overnight it, so we rescheduled her surgery to March 24...a date Dr. Siddiqi doesn't usually do surgery, but I'm not complaining.  We also scheduled every Wednesday for a sedation to fill that GIANT ten inch expander, and the grafting to be May 18.  Further out than I was anticipating, but not too bad considering. 

Dr. Siddiqi also wants to try to laser the nevus off of Addi's toes rather than trying to graft each of those little piggies.  So, I am not sure if that will happen in May or if we will have to wait a bit for that.  Only time will tell.

No more bandages

Addi had her grafting surgery seven weeks ago. She has been bandaged ever since, wearing slippers everywhere she went. So, we sent pictures to the doctor this week, and he said that her leg looks great, and that we no longer needed to bandage it! Woo hoo! She wore shoes to pre-school today, although she said that they were a little "squishy" on her toes. We are so happy with how this one looks.

This upper part hasn't been bandaged for some time now. I left in uncovered to breathe a few weeks ago, and she picked the scab off, but left this beautiful skin underneath, so I made the bandage smaller.

She picked off the little scabs at the bottom of her leg when she went down for her rest yesterday...a little blood, a bandage for the rest of the day, and today, all healed. Maybe that is why she needed to keep those crazy expensive bandages on for so long, so that she wouldn't pick at the darn thing.


And in other, related news, Addi will have another expander placed on March 2. We are on the downhill side of this whole surgery thing.

Healing update

Last week, we had to send pictures to the doctor so that he could check her healing progress.  We are so happy with the way Addi's leg is healing!  It looks so good.  Dr. Siddiqi agrees.

The leg reveal

But first, the story:

For the week since surgery, we have been talking to Addi about the day that her leg out be unwrapped and her drain would come out. We really wanted to prepare her, and try to keep her calm. So, she went in really excited, and kept telling us that she wasn't going to cry. The assistant, Lindsay, carefully took off Addi's brace, then the ace bandage, and got her to this point. So far so good.

She cut away the gauze dressing, and soaked the bloody parts with water so that it was easier to get off. Still, no tears, although Addi was watching with unwavering attention to what was happening.

Finally, the bandage was off! The bandage got caught on a stitch up by her knee, which caused Addi to start crying, but she wasn't inconsolable, and as soon as the bandage was completely off, we read a book and she calmed right down.

The resident surgeon came in and looked at Addi's leg. I think he was a little concerned, he kept saying we wouldn't know if it took for a couple of more weeks, but he thought it was still ok. We have seen this before - it's supposed to look like that. And, finally, when Dr. Siddiqi came in, he said the same thing.

While we were waiting for Dr, Siddiqi to come in, Addi looked at Lindsay and said, "I'm just wondering if I can walk now." Lindsay told her she wasn't sure, but she could ask Dr. Siddiqi. So, Addi did. As soon as Dr. Siddiqi came in, Addi looked at him, and after a tiny bit of coaching from Lindsay (she asked Addi what she wanted to ask Dr. Siddiqi), Addi said, "Can I walk?" And he said that she could!

Addi cried when we took the bandage off of the drain tube, but it was really stuck on there, I would have cried too, but when we told her that the drain was out, she immediately stopped.

We wrapped her leg back up, and were on our way. Now, bandage changes at home everyday for at least the next two weeks. And we are done until March!



 
And now the pictures:
 

Grafting...again

Addi had a grafting surgery, the ending of a very long round of tissue expanders. We have been doing her expansions under sedation, as I believe that I have mentioned before, so this was her 19th sedation, and we were definately ready for it to be over.

Last week, due to the projected "blizzard" in the valley, I chose to cancel the expansion, so she was one short of what she could have had, but still had quite a big bubble on her back. So we were scheduled for surgery at 1:45, but the room was running behind, and even Dr. Siddiqi was waiting. Addi finally got her versed about 2:45, and was really feeling it after being without food or water for so long. That's a good thing, by the way - I wish they sold versed at the pharmacy: amazing!

So, when they were ready for her, the "barking" anesthesologist came out to get her. No lie - he barks at the kids. We have had him before, and I was a little put off by him, but this time, he was great! And, when he barked, Addi barked back so they were fast friends.

Our good friend, Mary Ann, who is the child-life specialist, made sure that she was paged when Addi got there, and checked on her several times during our wait to make sure Addi was being entertained. Addi absolutely loves her! She hung out about the time that Addi would be going back to the OR and again went in to the room with her. Addi didn't even cry. She was so calm, and we could hear her laughing and playing as we walked away from her. That was a very reassuring sound!

Addi was scheduled for about 90 minutes in the OR, and we were waiting for the report from the doctor. It didn't come. After 2 1/2 hours, Will asked the waiting room ladies to call and check to see what was going on. It was just taking longer than they had planned, nothing was wrong, and we were told it would be about 15 more minutes. Thirty minutes later, Dr. Siddiqi came out. He was excited about the amount of skin that he was able to get. The Nevus is completely gone from her leg, he was able to do some without a graft, and used the skin from her back on the top and bottom parts of her leg.

We have had many people ask how many more surgeries Addi will need. The answer has always been, "not sure". So, I asked. We are looking at two more rounds, with her sedated fills, that is 10 or 11 more sedations. Totally doable!

So, Dr. Siddiqi sent us home, and Addi is sleeping comfortably in my bed.

Poor Will, he gets the couch.

Another expander fill

Addi had her second of four fills this week - November 10, for the expander on her back. We had a really positive experience all the way around that I wanted to make sure to document. (Sorry, no pictures)


After being checked in, we again made our way to the pre-op waiting room for Addi to play. Her friendly child-life specialist, Mary Ann, immediately came over with a mask and stickers for Addi and helped her decorate the mask. She explained that she would sterilize the mask, and have the doctor use it when Addi was sedated. When she was done with that, she left and came back with a coloring book that she had made just for Addi. The to sheet said, "Addison's coloring book", and it was filled with different pictures of princesses for her to color. Then she brought out the hospital buddies for Addi to choose from, and markers for her to color the face on. (I almost feel guilty - there are other kids that are just there for one surgery, and they didn't get the attention that we are starting to get - not guilty enough to tell them to go away, though. Hee Hee)

When it was time to take Addi back, she started to freak out a little bit, despite the versed. She wanted nothing to do with the Anesthesiologist, or a wagon to ride back in. Mary Ann came over and tried to talk to her, which calmed her a little. I told her that I was pretty sure the only way she was going to get back into the operating room even remotely calm was if I was able to hand her off to Mary Ann. So, she came with us, and took her to the OR, and stayed with her until Addi was completely asleep.

Fifteen minutes later, I was called back to the PACU - Addi was done and was starting to wake up. After about 5 minutes, we were taken to the recovery area, where the nurse was immediately on top of everything. She got Addi the pain meds that she needed immediately, and took care of her every request.

One thing that I have pondered, but not really worried about, is the fact that Addi has been to Primary Children's 17 times (not the Surgeon Clinic, actual sedation), and has never received one of the blankets that are donated to the hospital for patients to keep. Just something I found odd, but this nurse took care of that. She brought Addi a blanket, a clip board for her coloring book and, cookies for Addi to eat. (My purse and hands were more than full by the time we left that day) She was just really good and attentive.

Mary Ann also came and talked to us while Addi was recovering. She brought Addi a mini hospital buddy and asked if we would be willing to have Addi color it for the hospital's Festival of Trees tree. So, we brought that home as well. She also gave me some suggestions for the separation anxiety that Addi is feeling. I am still contemplating what to try. I think she may just be reaching her limit of what she can handle.

Anyway, I'm not sure how much liquid was actually put into the expander on this day, but it was an all around good experience.

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.