Saturday, August 24, 2013

So much to update!!

Wow. I just realized my last post was a while ago, and I have so many things to update everyone on. First, to pick up where my last post ended, we found out that Atticus had indeed gotten a Staph infection in the wound, but thankfully, it was one of the most mild forms. (Thank you, Lord, for no MRSA!!). We were able to switch to an oral antibiotic, and they sent us home with that, wound gel, lots of gauze, and medical tape. We were able to email Dr Bradley's office with a photo progression of his healing so that we didn't have to take the long trip to MUSC each week. You have to love technology sometimes!  Atticus is a slow healer, so its taken the better part of 3 months for it to be completely healed.  He just has a red spot where the wound was that will fade over time. I'm just thankful to be done "spackling" his wound with wound gel twice a day!! Lol!

Next, we were scheduled for Atticus' pre-Fontan Cath in mid-July. Due to some emergency cases, we ended up being bumped back to July 22nd. Everything went smoothly, and Atticus was even discharged later that night. Dr Bandisoe did end up having to "coil off" some extra blood vessels during the procedure, but apparently, that's pretty normal for single ventricle kids.  According to her explanation (and I am paraphrasing), post-Glenn kids tend to regrow these blood vessels from the aorta towards the pulmonary arteries (kind of like the BT Shunt in the Norwood Procedure), which they obviously don't need. So they "coil off" the extra blood vessels. MUSC is actually conducting a study right now to try to understand 1) why the kids grow these extra vessels, and 2) what effect (if any) coiling off these vessels (because some are large, some are small) has in the long term versus not coiling them.  It was pretty interesting. I'd love to know what they conclude when the study is finished.  But back to Atticus, Dr Bandisoe was really pleased with all of his numbers and recommended him as a good candidate for the Fontan. (Thanks again, Lord!). She hadn't seen Atticus in the Cath Lab since before his Tricuspid Valve repair surgery, so she was also really impressed with how great the valve looked now.

We finally got a call yesterday from Dr Bradley himself. (I honestly think that was a first. Usually someone from his office calls, and we speak with him in person mostly.)  He called personally though, because he had some concerns and really wanted to delay Atticus' Fontan a little while longer. His main concern was that he felt that Atticus was still too small for the surgery. (Atticus is only up to 30lbs and about 37 inches tall.)  The magic number for them is about 33lbs. Dr Bradley said he'd also like for him to be at least a year out from his last surgery.  I said that waiting was ok with me. I'd actually just read an article which suggested that when these kids wait longer for their Fontan, it seems to have less of an impact on their livers.  So we agreed to wait until after April of next year. Which brings us to today. Today we got the call from his office and tentatively set a date for May 14, 2014, for Atticus' Fontan.  In a way, its kind of a relief to finally have a date set, and for it to be so far in the future.  Because I also have another update....

Atticus is going to be a big brother!  That's right. Baby #4 is due to make an appearance around February 21, 2014. While we're super excited about the new baby, there's also a whole other range of emotions that come along with this news. The most obvious concern right now is to make sure Baby #4 is healthy. I'll have an in depth sonogram (much like the one I had with Atticus to confirm his condition) around the 22-24 week mark. I'm at 14 weeks right now. So please keep us in your prayers that this new addition will be 100% healthy.  The other major concern is that I'm going to have a very newborn when it comes time for Atticus' surgery. Part of me was hoping that his surgery would happen while I was still pregnant so that I wouldn't have to deal with that situation, but God's timing is perfect in all things. Who knows what that level of stress would do to this new baby?  I'll just trust that He has it all under control.

So back to Atticus...I can't believe my little boy is almost 4 years old!!  He's making such huge strides in his signing vocabulary, in stringing signs together, learning the alphabet, and even finally starting to sign numbers!  Its amazing to watch him blossom. Especially in these little "growth spurts" of understanding. Its so awesome to see him be able to better and more easily express himself.

Atticus has had a pretty unexciting summer, aside from the Cath. We celebrated Sandy's birthday at a nearby water park, and it was a lot of fun. It was unseasonably cold that day, so we'd have to force Atticus out of the water after 45 mins because his lips would be a deep purple.  We'd take turns taking him over to warm up, then back in he'd go for another 45 mins.

I think that pretty much catches everyone up with the latest Atticus news. He continues to be a blessing in our lives.  Its pretty late here, but I find that when everyone is in bed, its easier to make a post uninterrupted!  Thank you all for continuing to keep up with his progress, especially since I'm so awful at making regular updates, lol!  And as always, keep on prayin'!