Just Another Fill

Here we are at week five of round two already! Can you believe it??? I am so glad that it is going by so quickly and that we haven't encountered any problems besides the stitches (which was so surprise) and keeping our eye on the expander that was bruised from surgery. I am really hoping it stays this way but we just never can predict what can show up.

Anyways, not much else to say except that is was just another fill today. Same routine, same bit of fear from Aiden when we numbed him up and the same small amount of crying when we did the expander with the port in his arm. I am so proud of him. He is one brave little guy.

The back expander, even though it is the smallest expander, is my most proud because we are now at 175cc after I got in another 30cc today. As long as things stay smooth, I am 99% positive that we will be over our 250 goal which is really exciting. The more saline we can get in to make his bubbles bigger, the better the result should be. I say should because there is no telling how the skin will stretch in certain areas once Dr. Bauer works his magic!

The other two are also doing well! Even though the upper chest expander is looking less purplish, I am not taking any chances so I only put in 40cc, making the total 230cc. The lower chest expander is the toughest one. It gets so tight so quickly but as Dr. Bauer reminded me, just because it is the biggest one doesn't mean that it will fill the best. Every expander is different, especially depending on location. So, I barely could get in 45cc but that is ok because we are still doing well with totals now at 310cc.

His bubbles are getting so big! Check them out for yourself!

Belly expander at 310cc, Back expander at 175cc

Upper chest at 230cc! Yes, he can and often does rest his chin on his bubble! 

Easy Peasy

Today was fill #4. It really has become part of our normal Thursday routine. I don't have a lot of anxiety before the fills like I used to and I certainly don't have the fear anymore. Don't get me wrong...I don't like doing it (who would?) but I have to put that aside and be strong for Aiden. The less nervous I am, the easier it is for us to help him through it.

This was by far the best Aiden has done this round. He still continues to not be a fan of putting the numbing cream on but thats because he knows what is about to come. However, as soon as we sit him in his seat for lunch, he is perfectly fine and the 45 minutes fly on by. He enjoyed a popsicle for his special treat today, which he thought was yummy! When it was time for the fill, he sat in Michael's lap and picked Little Einsteins to watch.

When I went to do the first bubble in his lower chest, he turned around to look at what I was doing but then quickly went back to the show. While I was trying to put the needle in, he shifted a little and since this was the slanted one, it was hard for me to tell if I was in there. So, I had to pull it out. Darn it! So I went to go get another needle and then cleaned the area again. Then just before I went to put the needle in, I saw that Michael had accidentally brushed his arm on the port. Oops! So, I cleaned the area one more time. Aiden did so well throughout all of our little mishaps with only saying a little no at the first poke. I was able to get in 55cc with totals now up to 265cc.

The next bubble in his back was a piece of cake. I was in and out like a pro, getting in 30cc again! This one is now at 145cc! The port in the arm is my least favorite one because Aiden seems to have the hardest time with that one and we really have to watch him so he doesn't try to pull out the needle while I am filling. However, much to my surprise, he didn't flinch once. He even watched the bubble fill up in between watching his show. This one is still looking a little purple so we are still taking it easy, so I stopped at 45cc and that one is now at 190cc. I couldn't be happier with these results because with seven more hopeful fills left, all three bubbles are a little over half way there already! I know I won't continue to get these kind of numbers as the bubbles tighten up but we are in a very good place right now.

It was an easy peasy fill and an easy peasy week which I am very happy about!

As always, I will leave you with the latest pictures of his bubbles!

Upper chest at 190cc, Lower chest at 265cc

Back at 145cc 

Actually got a smile this time just after the fill! 

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

The Cloud of Worry

Well, here we are again, back at a Thursday and time for another fill with Aiden. A fill, that earlier this week, I wasn't 100% positive that we would be able to do it as scheduled. Unfortunately, during expansion, there is a constant cloud of worry that hangs in the back of my mind to remind me that any little thing has the potential to turn into something bigger. It is one of the sucky parts of expansion but it completely worth it to make sure we get the best result possible.

Earlier this week, Aiden wasn't sleeping too well at night. This is not completely unusual for this to happen from time to time but I was still checking him to make sure nothing was wrong with expanders or his stitches. He did not have a fever or any other symptoms either. Until Tuesday. He woke up sneezing like crazy with a runny nose. No other symptoms so I thought it could possibly be just allergies. My mom and I both felt like he was a little warm feeling but no fever so that made me feel a little bit better that allergies could easily be the issue. 

Didn't have a lot of time to worry too much at that moment because I had to take him to see the Dermatologist and remove the stitches in his leg. UGH. Thinking about this was a huge distraction from worrying about his runny nose though. I dread stitch removal and especially with Aiden being older, I knew that this would be hard. On the bright side, I knew it shouldn't take long as it was only a few stitches. Aiden knew something was up the second I set him down on the chair. I set up the iPad and gave him a sucker, hoping that it would be enough of a distraction. Unfortunately, it would be a big lie to say that it did. Although it was a short process to take out the stitches, there was crying and probably the worst part for me was him asking for me to pick him up. Instead I had to hold him down. He was scared, simple as that and its not easy watching him go through so much fear BUT the one thing I can say, is that after it was over, he was 100% fine. He doesn't remember it now and he won't remember it later. With all that being said though, his leg looks FANTASTIC!!!!!!!!!!

After that was over,  it was back to worrying about the runny nose. It wasn't getting better but it wasn't getting worse. By night time, he sounded a little stuffed up but still no cough, no fever. As a precaution, I emailed Dr. Bauer just to keep him in the loop. Since it was still a few days from fill day, he told me to see how he was over the next few days and if it seemed to be cold symptoms, hold off on filling for a few days. UGH. I knew thats what he would say but all I could do was hope it didn't turn into a cold. 

Wednesday comes and he still is sneezing with a runny nose but it has improved so I am somewhat relieved. That cloud of worry tells me not to jump to any conclusions just yet. By night time, he seems a little stuffy again but no other symptoms. 

So here Thursday comes and he sleeps through the night and wakes up seeming ok. I go back and forth all morning whether or not we should do the fill today. Its that cloud of worry that has me second guessing what to do but after having a sneeze free morning, I decided to go for it. Aiden certainly is way more aware now that he is older. He didn't like the lidocaine going on one bit this time. I know it doesn't hurt. He just knows something up and I don't think the previous trip to the doctor helped one bit. A reason that I am so very glad we get to do this at home. He is so much more comfortable at home than in a doctors office. 

Much to my surprise, Aiden did a lot better than I thought he would after being afraid of the lidocaine cream. Two of the three bubbles went perfectly. I filled the lower chest expander first and was able to get 50cc making the total 160cc. Then I filled the back expander and got in 30cc making the total now 85cc. Then came time for the upper chest expander, the one where the port is in the arm. Michael had to hold down his arm so that I wouldn't contaminate the needle and also so that he wouldn't try to pull the needle out while expanding. He did cry the whole time and that was hard but I got the job done quickly and it was over. Its hard to know whether he cried because he wasn't numb or because he was scared. My guess is the latter though because he started crying before the needle ever got close to touching the port. All in all, I would say it was another successful fill. Check out his growing bubbles! 

Reading a book right after the fill 

Back at 85cc

Upper chest at 95cc and lower chest at 160cc