3-Months Post Transplant

To say I was a little anxious for clinic today is a MASSIVE understatement. I'd had building levels of anxiety since Monday. This is the longest we've gone without vitals and labs since Jaisal's transplant, and by the time I got Jaisal to sleep last night, I'd receded into my own little cocoon because I was so nervous about what we'd hear today.

For once, all my panicking was completely unnecessary. Jaisal's clinic visit went amazingly well. His numbers continue to improve. In fact, one of the liver numbers that had stayed elevated post-transplant is now normal! He didn't gain any weight from the last visit to this one, but he did manage to get an inch taller. Considering we're no longer pumping him full of super calorie dense PediaSure as his primary source of nutrition, I think we're probably settling in to finding out what Jaisal's true weight growth curve is. Little man continues to be atypical in how his body responds to nearly everything, but we're thrilled with these results. Also, we're going to reduce the level of Jaisal's main immune suppressant a little bit to see how his body responds. We also got the okay to stop one other med, which we administered 4 times a day. Overall, very exciting news. Yippee!!

Walking into clinic was pretty entertaining. While the nurse's assistant took Jaisal's vitals, she mentioned that the nurse was wondering where we were. Slightly odd, since we were there around 9:15, first clinic appointment is at 9, and technically, our appointment wasn't until 11 (although they just see patients on a first-come first-serve basis for transplant clinic). Then I realized they were wondering because over these past three months I'd set a precedent for being the first person into clinic each week. What can I say, I like my routines. Our typical routine was thrown off this morning by Kirk who joined us for the milestone clinic appointment (and provided transportation to the hospital).

As soon as the nurse heard my voice in the hallway, she poked her head out of the conference room and told us she had been awaiting our arrival so she could tell us how good Jaisal's labs looked. I have to admit that there are plenty of times that the nurses and doctors at CMH drive me insane with their poor communication skills and at times inconsistent messages, but the fact that the nurse was anxious to see us and share the good news, well that's pretty awesome.

Another cute moment was when the nutritionist came into our room. She'd been on maternity leave since right before Jaisal's transplant and had not seen Jaisal in nearly 4 months. She was amazed at how great he looked and had tears in her eyes at the progress he's made. I know part of her response was because a) she's 12 weeks post-delivery and still super hormonal and b) she now has a little boy of her own so she perceives all of these medical issues slightly differently, but it was still really heartwarming to see how happy she was over Jaisal's progress.

Last but not least - we got moved to once a month clinics!!!!! We'll still be getting labs every other week, but we won't have to see the doctors again for another month! Jasal won't get a complete reprieve from the hospital since he has physical therapy on Thursdays too, but it's definitely a step in the right direction!

Here's little man strolling away from the hospital knowing that he's a bad ass. 

(p.s. The hat was a gift, and although I think he is cute wearing a baseball cap, I am not a fan of the logo he has currently. This unseasonably warm weather has thrown off my clothing options for Jaisal, and I was forced to settle for whatever sun protection I could find. Have no doubt, there will be a Cubs hat in the near future.  :))