July 24, 2013

Home and an Update

Hello? Is anyone still out there?!?

I can't believe it's been 2.5 weeks since I last updated here on the blog! Life has been crazy and adjusting home has been HARD.

That's right - WILL IS HOME!

Will was discharged June 8 and these past 2.5 weeks back at home have been nothing short of chaotic. I literally haven't turned my computer on until right this moment as I've been so busy and overwhelmed with everything.

So what's been going on over the past two weeks?

Will came home on TPN (IV nutrition) as well as fluids (and a host of other oral medications) which meant he was hooked up to IVs 18 hours a day. Thankfully we were able to drop his TPN about a week ago but he is still on fluids. We were able to move his fluids to 12 hours a day which means he gets hooked up right before bed and unhooked in the morning. This makes life so much easier as IVs during the day is a nightmare with an active toddler! Will is too tiny to carry his own IV pump so I was literally one step behind him all day long when he was hooked up during the day!

While we are home, we are no strangers to Texas Children's. Will has clinic appointments 3 days a week so we are spending anywhere from 9-12 hours a week at the hospital.

All of Will's blood counts look amazing and he is do so well in this recovery phase! His first engraftment study came back at 100% donor cells which is simply amazing! Our biggest concern right now is his hydration and his kidney/ bladder health. Will just isn't taking enough fluids by mouth to keep his kidney function normal thus the need for IV fluids 12 hours a day. While I am more than ready to say goodbye to fluids, I would much prefer the minor inconvenience over risking permanent kidney damage!

As I mentioned, adjusting to home life has been so hard.

Kate struggled the first few days as she went from only child, didn't have to share, being spoiled by a grandparent 24/7 to life with a high needs brother while being stuck at home with just momma. Unfortunately Will's isolation restricts greatly impact Kate and she is stuck inside with us until Alex gets home from work in the evenings. We've discovered many fun drive thru outings (hello cake pops from Starbucks and milk shakes from Chick-fil-a!). She is doing much better and I am so amazed by how well behaved she has been during our hours at the hospital. While I hate that Kate had to grow up in the hospital setting, it really has made her extremely comfortable at Texas Children's which means she loves visiting the doctors and nurses that she simply adores!

I also had a really hard time adjusting to home life. Don't get me wrong, living in the hospital is also so very hard. And I am so thankful that our family was blessed to be able to bring Will home. But home life is hard as well! I am now nurse, wife, cook, maid, and mom which was overwhelming that first week. I really struggled with my adjustment and it almost felt similar to my postpartum depression days. Thankfully I've got a wonderful support system that loved me through those hard days and I am feeling so much better now!

I'm hoping that I can get back to regular blogging now that home life is settling down and we've gotten into a nice routine! I am longing to document the hysterical phase my kiddos are in! Kate keeps me laughing all day long with her shenanigans! She is seriously quite the comedian these days!

As always, we are so thankful for those of you that are cheering Will on as he continues to recover! We can only pray that things continue going as well as they have been!

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