Week Three

Here we are at Thursday again and boy what a week it has been. Every thing was going fine until Tuesday. When I went to do Aiden's normal routine of getting him dressed and moisturizing his bubbles, I noticed that his stitches were red and irritated. Not too bad but it brought me right back to last round when this happened. In fact, if we didn't have the third bubble, I wouldn't even be able to tell you which round was which based on looking at the photos. I knew I had to send a picture to let Dr. Bauer know so I went to get my handy dandy iPhone to snap a quick picture. Unfortunately, Aiden has been pretty emotional this time around now that he is older so even a simple picture gets him hot and bothered. Its fear and its over quickly but it doesn't make it easier to watch.

Then I waited for a response back from the doctor. Didn't take long for Susan, one of our fabulous nurses, to email me back. I was afraid to open it because I had a gut instinct that this time, they would say to take them out.  Last time, we did a few things to try to calm the stitches down before we did remove but now we have history that Aiden's skin doesn't do well with stitches. Well I guess I get an A+ for calling that one because her first sentence was "Time to get them out." It was an immediate burst of tears. After getting his leg stitches out last week and having it be an awful experience, I did NOT want to do this, not without being able to give Aiden something to help him cope with his fear and not with almost 50 stitches to take out.  If he wasn't having such an emotional time, it wouldn't have been so rough on me. There is only so much strength a mom can have and in that moment, I didn't have any.

After calming myself down, I called my new pediatrician office and left a message. I had previously discussed this happening since I knew it was a possibility and he said that he would either help me do it or find someone that could. I was looking for someone to be able to give him something, like Versed or Ativan to calm his nerves so that we could just get it done. I had also previously discussed this with our dermatologist but because she is outpatient only, she had to get approval from her office manager to be able to do this. The only problem was that she is only there on Tuesday's which was the day this all happened so I was counting on my pediatrician to come through. Sadly, I was very very wrong. Their office was extremely difficult and not understanding one bit saying that they needed notes from surgery and blah blah blah. I was so extremely disappointed. They also kept asking me to call Dr. Bauer's office for further instruction as if I had no idea what I was doing. Needless to say, I will be looking for a new pediatrician again. I moved on to working with our dermatologist but I didn't catch her in time so that wasn't looking good.

I was running out of options. I decided to ask my good friend, Christine, if she could email her doctor in Arizona and see if she knew anyone that could help me do this as I was still terrified to do this on my own. Dr. Price got back to her the next day after she was out of surgery and was going to help us out. So that was relief to hear BUT I also didn't know when we would hear back from her so I was also communicating with Dr. Bauer's office for advice. They were encouraging me to try this on our own mainly just because it was better to get them out sooner than later. This was going to be my last resort. By the end of the day Wednesday, we still had no solid plan and out of fear of waiting longer to have the stitches get worse, I decided that I had to take a shot at this myself. BIG DEEP BREATH. Technically it is not that hard to do but when you throw an emotional toddler into this, it is hard. So, I decided that we would try to do this once we gave him some Tylenol with codeine and after he fell asleep. So this is what we did last night.

It seemed like it took forever for him to fall asleep but he finally did and I got everything ready. First we numbed the incisions and waited a bit for that to kick in. The first incision I took out on his stomach actually went quite well. I knew it would be the easiest one. Then he started to wake up and realize that something wasn't quite right. So, I put him back to sleep and started again. The next one I did on his back definitely wasn't as easy but I got it done as fast I could without him fully waking up. By the time I went to do the third one, he had figured us out and although he was super tired, he fought going back to sleep. So I gave him a sucker hoping that would help and turned on a show for him to watch. After some flinching and crying, I was able to get all of that incision except for one knot. It took us almost 90 minutes to do just three of the five incisions so I decided this was enough for now. I was pleased though that we got that far and decided that we would try to get the last two incisions tonight. Despite the progress we made on our own, it still frustrates me that I even had to deal with this in the first place. Super disappointed in the lack of care or willingness to help with our doctors out here. We are simply spoiled by the amazing staff we have with Dr. Bauer and more offices should follow in their footsteps.

Knowing that we would attempt this again tonight, I told Michael that I would do the fill while he was gone at work today so that we wouldn't have to do all of this tonight when he got home. He wasn't crazy about missing it as he likes to be there to support Aiden but we both knew this was best considering that we don't know if we will get just as lucky as we did last night.

It is so amazing how the fills become routine. I feel like a pro now. I don't even need the cheat sheet anymore. Aiden did not do well getting the lidocaine on but after we got him settled, he enjoyed a nice lunch and the waiting period for him to become numb went by quickly. Once it was time for the fill, he sat in my mom's lap with a sucker and his show on the iPad and was ready to go. I did the lower left chest first and got in 50cc and he barely flinched. I thought I would have gotten more but its still great. Moved on to his back expander which was a piece of cake. Not a peep and 30cc was in and out. The arm one is my least favorite. I am not sure that we will ever have it "easy" with that one this round. He told me no this time when he saw the needle and that made me sad. When I put the needle in, it was difficult for me to tell if I was in the port so I decided that I would get another needle and start over just to be sure. I felt bad about that but it was the right thing to do. He told me no again but then it was funny because he noticed the tab of the needle was blue and said "BLUE." I guess he is easily distracted. I put 50cc in that one and was done with fill #3. Only 8 more to go. I am really happy to report that the back bubble is now only 10cc away from being half way to goal!

Upper expander now at 145cc Lower expander now at 210cc

Back expander at 115cc and you can also see the three areas where I took out stitches. They already look better!

Aiden just after a fill and a bath to wash off all the sticky sucker