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.