FINALLY...surgery results!

I finally have some time to catch up on updating everyone on Aiden's last surgery and where we stand now on the nevus removal journey. Sorry it has taken this long but we really have been nonstop busy since we got home from Chicago!

After five trips to Chicago, we are definitely considered experts which is not something I am proud to admit but its the truth. We hit a record this time for getting out of the airport and at the hotel. Even though we are only there for a short period of time, Chicago does feel like our "home" away from home.

Since our surgery was squeezed into Dr. Bauer's surgery schedule, we had to have surgery on a clinic day, meaning that we would be the only surgery of the day but that it would have to be in the afternoon. UGH. We got confirmation the night before surgery that Aiden was scheduled for 2:00pm. It  was going to be a long day and most likely we were going to have to stay overnight in the hospital but we would manage.

Lucky for us, Aiden slept in until almost 9am so that definitely helped. We spent the rest of the morning at the local mall and Aiden had a blast riding in this little fire truck in the play area. The time went by quickly and there we were again...at Highland Park Hospital. Aiden definitely knew something was up and did not want the nurses coming in and taking his vitals but we managed. Our surgery time came and we were still not taken back. The nurse had said that Dr. Bauer had gotten caught up in the office but was on his way. Shortly after that, we saw Dr. Bauer stroll right by and knew it wouldn't be long before the nurse came to take us back. By this point, I was so starving so I was really feeling for Aiden but he actually seemed to be handling it just fine. Such a little trooper!

I LOVE that we can still get smiles out of him, even at the hospital! 

When they came to take Aiden back to the OR, he was not happy. I wasn't expecting this for one second, especially since he was given the Versed. I have not cried since the first surgery but I felt the tears coming again. It is so incredibly difficult to leave him but when he cries, my heart just breaks. I was able to hold back the tears until they walked through the double doors to the OR as I refuse to let him see my weakness. As hard as it is, there are two constant comforts that come immediately...1. he is  in the best hands and 2. he won't remember.

Michael and I finally grabbed a bite to eat in the cafeteria and then proceeded back to the waiting room. There comes such relief with expander removal but it makes the waiting go by that much slower as we anticipate Dr. Bauer coming out with the results. It was about 5pm when Dr. Bauer came into the waiting room. He told us that things went well and that basically the arm and shoulder was left. It was pretty exciting news. He also said that he was a little concerned about some rough scarring that may come around the shoulder area but that it will all work out in the end. It made me a little nervous to see the results but the most important thing about seeing Dr. Bauer is taking care of our little superhero so we put that behind us. Shortly after seeing Dr. Bauer, we were called to go to recovery. When we walked in, I could hear his cry but it wasn't anything like last time so I was hoping this was a good sign.   Since we had such a late surgery, we knew we would be staying the night which is probably harder than being at the hotel but we were left at little to no option, especially since we struggle to get him to eat or drink for a long time after surgery. There was lot of crying the first few hours but we managed to get by and finally got him on a pain med schedule that seemed to at least keep him sleeping. He was really irritated that his arm was held down in the ace wrap but under no circumstance did Dr. Bauer want him moving his arm so that was our only option. It was definitely another struggle to eat or drink again...he even turned down a popsicle! Finally around 12:30am, we got him to drink maybe a few ounces of juice but it was a start. After a long night, we were able to get him to eat some baby food and drink some orange juice in the morning and get discharged.

Watching the iPad after surgery. 

We certainly didn't get much sleep but we are so ready to leave this place! 

 From the hospital, we headed straight to Dr. Bauer's office for the reveal. For the first time ever, we actually got to see Dr. Bauer at his office. He normally is in surgery when we come but it was another clinic day so he was there! When we pulled off the dressing, he looked relieved so I was instantly relieved. He said that the area he thought might be an issue, actually looks great! He also said that as long as Aiden isn't moving his arm too much, we could figure out something other than placing his arm in the wrap. Thank goodness because that was really bothering him and he had no interest in moving his arm. His armpit area was extremely tender so it was understandable that he wouldn't want to move it. As exciting as the reveal is, I have to admit that the first reaction for me is always "GULP." The scars are not easy to look at but I know with time they will heal and not be that noticeable in time. After that initial reaction, it really is amazing to see the results Dr. Bauer was able to achieve given that we were pushed up!

Take a look at where this journey has taken us....

Before any surgery

After round one

Back before surgery 

Back after round one!

After ROUND TWO!!!!!!!!

After ROUND TWO!!!! Nevus is gone up until the crease of his armpit.

We are really pleased with the results. One more round of expansion and then some revision surgeries and eventually nipple reconstruction and this nevus removal journey will be over!

The Last Fill

Today was the last fill of round two. It was actually bittersweet. I wish we could have four more fills but I am also glad that we don't have to worry about "fill" day until next time.

Aiden did fantastic today. I wasn't expecting him to because he was less than thrilled to fill up his bubbles. He was, however, thrilled at getting a sucker, especially since it was one with a little lighting mcqueen toy at the top. To say this kid is obsessed with cars is an understatement. He even watched this new little show we found on Netflix that is all about cars.

I did experience a mishap today and actually it made me laugh. When I went to do the first bubble, everything was going fine. The needle was in, I could feel the port and the saline seemed to be going in. Well, out of nowhere the syringe comes flying off the needle and squirts Michael right in the face. We were both silent for a second but moved on to get new supplies since those were now not sanitized.  I have never had that happen before and the only thing I can think of it that I didn't have the syringe completely attached to the needle and it just came loose. The best part was Aiden didn't even flinch and didn't care that I had to poke him again. If that would have happened last time, I would have freaked out but it was no big deal and no reason to panic. So, instead, we laughed it off.

All of the other bubbles went perfect. No tears and no flinching one bit. Aiden even looked at the needle in his arm and clapped and said "Blue" because the butterfly part of the needle is that color. We ended the last fill with a high five and that couldn't have made me any happier. I am no medical professional but I can easily do this and actually find it easier in the comfort of our own home.

I did not put a whole lot in today but I am pleased with the numbers. He now has 290 in the upper chest, 360 in the lower chest and 220 in the back. Considering we are moving up surgery and missed a week, we are not that far off from the goals of 350, 500 and 250. I know this is going to be great results! I am relieved that we are going early so that we don't encounter any more issues as we are starting to see some drainage again from the incisions.

Take a look at what the final fill brought us to....

Upper chest at 290cc

Back at 220cc

Lower chest at 360cc and quite the view of all three! 

We will head to Chicago on Sunday and prepare for surgery on the 23rd!

The Year of Changing Dates....

There have been a lot of unexpected things happen to our little family in 2012 so I shouldn't be surprised by my news that I have to share but somehow I still am...just a little. So, here I am to report that our surgery date of November 12th to remove Aiden's bubbles has been moved to October 23rd. You are probably just as surprised as I was since everything has been going so well. So, let me catch you up to speed. 

A few days after we did fill #5, I noticed some kind of fluid that was leaking out from his upper chest incison. It wasn't a whole lot but because it was coming from the expander that was bruised from surgery, I was slightly concerned that we were heading into a problem. I emailed Dr. Bauer a picture and he said that we would need to watch it. Then a few days later, the lower chest incision also had a spot that was leaking out fluid so I emailed Dr. Bauer again. Keep in mind that the expanders looked good still and it didn't seem like the fluid was increasing. So in my mind, I was thinking that Dr. Bauer would put him on an antibiotic or something to keep the expanders healthy. Well I thought wrong! He said that he thought we should move up surgery. WHAT???????? I didn't see that one coming for one second since we weren't battling a huge complication with a massive infection. And not to mention that we went very quickly from "we need to watch it" to "lets move up surgery." 

He further explained that he didn't want something bad to develop out of this and then have to lose the good skin that we already have so far. He also said that he had a couple of meetings this month where he would be out of town and he didn't want an emergency to occur and then not have him be there to do the surgery. I most certainly didn't want any of those things to happen so we agreed that it was best to move up surgery. 

Was I horribly upset by this news? Not really because Dr. Bauer knows best and I know that the results will be amazing. I would hate to have something happen and not nearly get the results we could have if we left the surgery the same. Was I disappointed? Absolutely! We were doing so well and his bubbles were on track to go over our goals on at least two of the bubbles so it is hard to think about where we could have gotten. I have learned through my own experiences and my friends experiences, that we can not think about the "what if's". With expansion, we don't always know what will happen so we learn to roll with the punches. 

The one thing that made me nervous was when Dr. Bauer was going to be able to schedule us in for surgery. We had so many plans for October with the major thing being a Birthday Bash with two of his little buddies who have birthdays very close to each other. The first date that Kristi gave me (Dr. Bauer's wonderful assistant) was October 8th which would have required us to leave in three days. Although we fly southwest and are able to easily change our flight, it would have cost us a lot of money to change it with such short notice so that wasn't really an option for us and since it wasn't an emergency, Dr. Bauer agreed that it would have been too difficult to get there. So, we went with the next available date which was October 23rd. Of course this date had to directly affect the party and I felt horrible about it but it was best for Aiden and that is our number one priority. Luckily, we were able to move the birthday party up one week and everything worked out. It still sucks that we have to go through this and I have been really tired of switching dates around but 2013 will be a new year and hopefully with it will come better luck with our surgery dates. 

After we had the new date scheduled. I asked Dr. Bauer how we should proceed with the fills and he told us to wait a few days and then let him know how the incisions look. Luckily, after a few days, the fluid seemed to stop leaking out and the incisions were not that irritated so he said we could proceed conservatively. If anything else was to happen with the incisions then he told us to stop. I was happy to be able to do a fill but also nervous because I don't want anything else to happen with them. So I waited a few more days before finally doing one. 

I am so happy to report that Aiden was awesome during this fill. I wish I would have thought to video tape it. He did not flinch or cry one time and that is a huge reassurance to me that doing these fills aren't painful for him but that he is just scared. He was such a big boy that he even watched me fill up his bubbles and helped me check his skin to see if we could fill them up some more. The little car toy that we gave him also helped a lot! He made his beep beep noises along the way and it was over and done with so quickly that I couldn't believe it. I can't wait to tell him one day what a brave little boy he is. It makes me cry just thinking about. He truly is my little superhero. 

With caution on my mind, I filled 20cc in his back expander, and 30cc in his two front ones. Our totals are now 195cc in back, 340cc in lower chest and 260cc in upper chest. We actually do have some great numbers and are pretty close to our goals so that I am really happy about. I really hope to get in one more fill next week! And then off to the Windy city we go after a fun Halloween Birthday Bash that is going to be blast! I can't wait to see the results from this round and share them with you all! 

Here are his latest bubbles...

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