Two More Weeks!!!

Even though I have been through this process before, it still amazes me how fast the weeks fly by!! Two weeks from now, Michael, Aiden and I will make the trip back go Chicago to remove these bubbles!!! It's crazy to associate a bit of excitement with any type of surgery but the relief of not having to worry about bubbles anymore is exciting!!

Aiden is still doing great with the process and that definitely makes it easier on us to keep chugging alone. He is starting to struggle with finding the sweet spot to fall asleep in but the poor kid is limited with options!! The left side is weighed down by his bubbles and his right side has a cast on it so it's no surprise that he flops around for quite some time before finally settling.  BUT that's the only thing that slows him down!!!

Aiden had his 8th and 9th fill since I lasted posted  and everything went great! Since we are only filling one bubble, it goes by really quick too!! For the 8th fill, I put in 60cc, leaving the bubble at 680cc!!!! It felt good to know that getting to 750cc wasn't going to be hard at all with a hopeful three fills left!! The 9th fill allowed me to put in 55cc, which was even more exciting because our total was now 735cc....just 15cc away from the size that the expander is at 750!!!! I know these can hold much more than that but it's such an accomplishment to get over the size that gets placed!!! This makes up for the fact that Aiden's shoulder one is no longer being expanded!

Aiden after his 9th fill!!! 735cc

I'm going to end this blog post with some BIG, BIG news!!! Last week, the hole in Aiden's shoulder incision was slowly growing. Not by much but still slightly growing. Then, all of the sudden, it seemed slightly smaller! I thought my mind was playing tricks on me until the next day, I could no longer see through the hole! It appeared that the gauze/bandaid was working similar go how a wet to dry dressing would work and it started closing! It was lucky that we didn't have gravity working against and it wasn't actually a hole on the bubble when it first started. Never expected it to close so, it is really exciting that is has!!! Even if it decides to shift again and reopen, we will definitely make it to our scheduled surgery, which is awesome news!!!!!!!

The hole then...

The hole now...

Just two more fills and Chicago here we come!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

When it Rains, it Pours...

A very close friend of mine (and fellow nevus mommy) just wrote a blog post about what life can be like during expansion. It perfectly described how I feel throughout the entire 12 weeks, so I am stealing the concept for this blog post! You can read the post here but basically she talks about how it feels like a storm cloud is looming over our head during expansion and how we aren't quite sure what the forecast is going to bring.  No matter how great the forecast may appear, at any time something could pop up. This is why when anyone ever asks me if this is our last round, I simply say "I'll let you know after our next surgery."

Things have been going quite well for us this time around but the cloud over my head knows to never get excited about that feeling because expanders are completely unpredictable.  Aiden had his 7th fill earlier in the week and it went well. I decided to continue on the path of taking it easy with the shoulder so I only put in 15cc, giving us a total of 155.  The back was a little hard to gauge this time. I put in 80cc and the expander still seemed quite soft but I decided that was enough, leaving the expander at a total of 620cc!!! WOWZA! 

Shoulder at 155cc

Back at 620cc

Happy as can be just after fill! 

As usual, I took pictures, put the stuff away and we were off to celebrate a friend's 4th birthday. I was somewhat concerned about a purplish area that had shown up on the back expander but by the end of the night, it was gone and not an issue. 

The following day was definitely something I didn't expect. The forecast had changed and it was cloudy with a chance of potholes!!! (Thanks Amie for coming up with that one)....

During our normal morning routine to aqupahor up his bubbles, Aiden walked by me and I did a double take because I swore I saw a small hole. My first reaction was "No, it can't be." After chasing him down (lovely toddler games), I was able to get ahold of him and take a closer look. Sure enough, a tiny hole was there on the incision on his shoulder expander. I'm surprised that I didn't immediately panic but I just pulled out my handy dandy iPhone to take a picture and emailed it off to Dr. Bauer. After this point, I started to get a little nervous but still wasn't panicking because I knew that whatever ends up happening, we will be just fine. Plus, we had a few things going for us at this point. 1. I caught the hole extremely fast since he definitely didn't have a hole when he went to bed 2. The hole is on his incision, not the bubble so for now, our new expanded skin wasn't being compromised and 3. If Dr. Bauer did decide to move up surgery at any point, we have pretty good volume in our bubbles. 

After hearing back from one of the nurses, I went out to get some tegaderm (sticky type of dressing for wounds) to place over the hole and basically wait and see what happens with it. Dr. Bauer confirmed that this is how we should proceed and it wasn't anything to be overly concerned with at this point and that we would no longer expand that bubble. That was obvious to me that we wouldn't be expanding anymore on that bubble but I will have to admit that reading that email stung for just a spilt second that 155 was the reality for our shoulder bubble. Of course this is not our ideal situation but we accept it and move on and perhaps pick up our umbrella and hope that a hurricane doesn't come in these next four weeks until surgery. 

The tegaderm was not working out very well for us due to the location being in somewhat of a crease, so I emailed Dr. Bauer for some tips.  After looking at the second picture, Dr. Bauer thought that the tissue surrounding the hole looked solid, so he basically said to forget about the tegaderm and just keep it clean. Then he warned me that I should expect to see yellowish fluid coming out of it but that it was normal. SAY WHAT??? Ugh. This didn't sound fun but I knew that it would be doable, especially after doing all the things I have already had to do.

Everything seemed to be going ok and the hole seemed to be doing well. This "pothole" situation definitely caused me to be a little nervous and upset feeling but I also had relief in the fact that I knew it would be ok no matter what and that Aiden was not in any pain by this. He goes about his day just fine and you would never know that we had any potholes in our forecast. 

What came next in our week was so far past my radar, that I don't even think our storm cloud knew it was coming....but I guess as the saying goes, "when it rains, it pours...."

Aiden and I were heading downstairs and then all of the sudden, he trips and falls DOWN the stairs. It wasn't very many stairs but it was enough to make a hard fall and land on (luckily) his right side, mainly his arm. Of course he cried and cried and cried but then seemed to be ok. Even though I knew I couldn't have foreseen this coming or really done much to prevent it while it was happening, I felt terrible. After a little while, it didn't seem to be really bothered by it much, except for that it seemed tender. Well as the day went on, his arm was swelling and it seemed a little curved and he said it hurt. So, we decided to take him to the urgent care for an x-ray just in case. Good thing we did because his arm was broken. Technically fractured but to me it was broken and I felt even more terrible despite it being out of my control. I think it is just natural to feel terrible when your child is hurt. I guess you can say that our forecast was now cloudy with scattered showers!!!!! We were doing ok with a hole but now had his arm put into a plaster splint. The urgent care doctor estimated that he would need this on for about four weeks which of course falls right into the time that surgery is supposed to be!!!!! We will see the orthopedic on monday and have more of a realistic time frame for this but it definitely has me nervous for when his right arm will be healed. If it isn't before surgery, then both arms will be immobile and that will be somewhat of a challenge!!

Eating lunch with his splint on!! Covered it with saran wrap to keep it clean and dry!! ;)

On the bright side, my sweet little boy is quite the trooper. The doctor was shocked that he didn't seem to be in more pain.  He has told me that it hurts every once and awhile but if he didn't have the splint on, you wouldn't be able to tell he was going through so much. We are all managing the best we can even though it flat out SUCKS!!! We will continue to fill the back expander and hope that our scattered shower forecast will at least stay....

Catching up!

It's been quite busy around here that I haven't had a chance to update you all on Aiden's growing bubbles. He has had two fills since I last posted and things are pretty much still looking good. He really does amaze me how he doesn't let these bubbles stop him from life!

When we did his fifth fill, my dad's family was here for a family reunion so a lot of them were able to witness just how easy the fills have been for us this time! I think they were all amazed by the process and especially by how Aiden did even when we had a little mishap. Everything had been going just fine until all of the sudden the syringe detached from the needle and there went saline all over Daddy and Aiden. Had this been our first round, we probably would have panicked but we didn't. Luckily, I fill up extra syringes of saline just in case something like this happens so I just moved on to the next one, estimating how much saline actually went in the first time before it detached from the needle. The other bubble went just fine! I just had to laugh though that of course something would happen like that when I have a crowd watching us! We did hit exciting news that week with the shoulder bubble now having 125cc in it, which is half way to the size of the expander!

Everything was going great and then Aiden woke up with a runny nose and a slight temperature a few days after his fill. This always seems to happen at least once during expansion that he gets sick. He of course, was still on the antibiotics so I didn't even bother emailing Dr. Bauer. Thankfully he did not have that bad of a cold and he was all better by the time Sunday came around again to do his fill. I still can't believe that we did Aiden's sixth fill already. The process seems so long when you first get those bubbles placed but before we know it, we are more than half way through the expansion!

Aiden's bubbles are getting pretty big now! The shoulder one is at 140cc and the back one is at 540cc!!!! We are taking it on the easy side with the shoulder as Dr. Bauer has mentioned that it looks on the thin side but for now everything is in good shape.  It certainly doesn't take away any worry though!!! If everything goes accordingly, we should have five more fills and then off to surgery we go!!

Check out his growing bubbles!!!

After his 5th fill, shoulder at 125cc, back at 460cc

6th fill, 140cc

6th fill, 540cc