February 18, 2014
A Wonderful Will Update
How awesome does my sweet boy look (this was yesterday)? And yes - he is out in public WITHOUT A MASK ON HIS PRECIOUS FACE! And not just outside - he's at the zoo! Looking like a handsome 2 year old. Looking HEALTHY! I don't think anyone at the zoo would ever guess what he's been through. What a huge praise!
That picture shows y'all just how awesome Will is doing.
But playing catching up, here's what's been going on with our sweet boy!
About 9 weeks ago Will randomly got his PICC line removed. For those of you counting, he had some type of semi-permanent IV (PICC or Hickman central line) for 7 months! His lines remained in for so long post transplant due to his kidney issues and the fact that he was dependent on IV fluids. Well, his line was giving us trouble, not giving any blood return, clotting off often, etc. After a few weeks of issues, his doctors made the call to pull his line and see how his body did without fluids. Any foreign object in the body is a big risk for infection so it's always good to remove PICCs/ central lines if possible. We decided to pull the line and not put a new PICC in. If his kidneys started acting up, and he needed fluids again, we would have put one back in. But there was no need to surgically place a new line when we were testing his kidney capabilities and he wasn't IV dependent.
His kidneys did great. It took a few weeks for them to "catch up" after suddenly stopping IV fluids but, all that matters is they did catch up and they are still functioning normally! And will is still line free!
No lines is wonderful but also means Will has to be stuck every appointment for his blood draws. Thankfully he has always been a blood draw champ and doesn't even cry anymore! He even pulls his sleeves up and gives him arm to the nurse without hesitation! He may not be able to talk yet but he sure understands and comprehends everything that goes on around him!
Ever since the PICC removal, things have been relative uneventful! Will had one minor set back and spent about 12 hours in the ER one night due to fever. Thankfully he broke his fever on his own and tested negative for flu/ RSV. His immune system is coming back very strong (we stopped immune suppressants about 6 weeks ago) and it is amazing that he was able to fight off whatever was plaguing him on his own!
One major milestone was that Will was able to receive a flu shot 2 weeks ago! A bone marrow transplant completely knocks out any vaccinations and patients are typically don't start the re-vaccinated process until 1 year post BMT and aren't able to receive any live virus vaccinations (like the MMR) for 2+ years post transplant (Kate has still not been cleared for these). But, Will's IgG level and other immune system markers came back so strong that his BMT doctor went ahead with a flu shot! We are having an awful outbreak here in Houston and the flu would be a major hit to Will's new immune system so I'm very thankful he is relatively covered now!
Ten days after his flu shot we went back to the zoo for the first time! Since then we've done the zoo again as well as the butterfly garden at the Museum of Natural Science. Kate was completely amazed when we loaded the entire family up and went to do something all together. She kept saying "wait. Bubba comes wif us? He gets to come wif me? Oh bubs you will just love my zoo. I will show you all the animals! I so excited!" It was such a precious moment!
The latest development is that Will was just moved to monthly clinic visits! I just can't even wrap my head around this but am so thankful appointments are spreading out as we officially move to North Houston this week!
I will never, ever forget what my children have been through, and I will never stop be thankful for everyone who carried us through this journey. But it feels amazing to close the isolation doors and start experiencing normal motherhood for the first time ever!