Thank you for continuing to check in and keeping us in your thoughts. Over the last few weeks, Blakies has been undergoing physical therapy, occupational therapy, speech therapy and our favorite – music therapy. He’s been making great strides each day and getting closer to his normal toddler self (like throwing all his toys and food on the floor). ?
We have a few priorities right now. The first is getting him reacclimated to eating. In addition to his heart/lung condition, he has a paralyzed vocal chord and his function is not yet safe for liquids. We are working on building an appetite and ensuring he can eat and drink safely. Also, while sedated, this kid popped 4 new teeth – mostly molars, so he’s figuring out what to do with them.
The second goal is getting him off oxygen. We’ve weaned off two machines and in just the last few days have not needed oxygen while awake! We are expecting to go home with oxygen, but ideally not requiring it.
Though anticipated, another challenge has emerged this week. Withdrawals. We have a toddler experiencing withdrawals. Soak that in. The team is doing an excellent job mitigating and responding to it, but it’s awful to watch as a parent. Slow and steady is the plan, but it’s going to be something we manage for a long while. Perhaps the upside was teething on morphine.
On a brighter note, the big news is that we graduated from the CVICU! We were moved to a different “step down” pod with less intensive care. As of today, we’ve been here 7 weeks. This is now our 4th room, but hopefully the lucky room we will get discharged from.
Please keep up the good thoughts, good deeds and prayers. We can feel the love and know we are not in this alone. For that, we are forever grateful. Here’s to progress!
#forblake #teamblake #gooddeedsforblake