The Tales of Jaisal and Sir Oliver

Jaisal and Sir Oliver had a busy week. Since his last bout of RSV, his prograf level (main immune suppressant) have been all over the board. In this immediate post-transplant period, CMH considers his prograf to be in a therapeutic range between 10-12. Each person, however, metabolizes prograf differently, so the only way to measure therapeutic levels is through blood draws. Our week began with a lab draw at 7 am at CMH on Sunday morning. It is traumatic for both Jaisal and me to get blood draws, but I am thankful that we are so close to a pediatric hospital where they can stick him just once to get the blood they need. I read way too many stories about kids having to be poked multiple times for regular labs and I cannot imagine the anxiety those parents experience in advance of each visit.

Since the weather was so gorgeous on Sunday, my brother and Kirk took Jaisal to the park for over an hour to play. I have no pictures to document it, but for the first time ever, Jaisal went down the slide without anyone holding him. I know that he has neck and back control, but it felt like a big step for him to go down the slide basically by himself! That was definitely the highlight of Jaisal's day. He was pretty unconcerned about the Super Bowl.

The rest of our week was pretty medically focused. A lot of Jaisal's appointments from last week got shuffled since he was hospitalized and had RSV. Tuesday was physical therapy. Wednesday was another lab draw (the prograf level was still too high) followed by an ultrasound to check his diaphragm. Thursday was liver clinic, followed by a phone appointment with the cardiologist. Friday was another lab draw, followed by a pediatrician appointment to get an RSV antibody shot.

It was a busy busy week, but we had LOTS of good news. Jaisal's liver labs continue to improve. Although certain liver numbers still have not normalized, they are back to heading in the right direction. The ultrasound showed even more movement in Jaisal's diaphragm and we have been given the option to try Jaisal off bipap. Little did the doctors know that we'd already been doing that. :) Beginning on Tuesday Jaisal was waking up every 45 minutes on the bipap machine.  It was beyond frustrating and exhausting, so after 4 hours of that nonsense, we'd take Jaisal off the machine. We'd already tested Jaisal off oxygen over the weekend and knew he was maintaining his sats, and lo and behold Jaisal maintained his sats and didn't look or sound like he was having respiratory distress off the bipap machine. We were cautiously optimistic (on the surface, inside I was jumping up and down with excitement).

Other good news included growth. Jaisal is jumping growth curves! He is now over 22 lbs, nearly 32 inches long, and continues to have a large melon of a head. (We love our little bobblehead baby.) AND on Friday, we got news that Jaisal's prograf level is back in the therapeutic range, so no more blood draws until Thursday! Woo hoo! And it took a significantly smaller dose to be in therapeutic range. This is great news since although prograf allows Jaisal to not reject Sir Oliver, it's also a really toxic drug that over time can cause renal issues and create an increased risk for lymphoma.

Last but not least, the cardiologist is unconcerned about Jaisal's semi-persistant tachycardia. Jaisal's average heart rate over the course of a day is still elevated above the norms, but his heart is functioning properly and the cardiologist seems fairly confident that the tachycardia is related to the breathing issues. It's not an absolute resolution of the issue, but they feel comfortable with no follow up until June. That is a serious load off my chest.

Outside of all of this medical stuff, we did manage to have some fun this past week.  I cleaned out our hall closet to make room for Jaisal's ever increasing medical supplies. He helped by going in and out of the closet and shutting the door. I love his little plaid pajama pants. They make him look like even more of a little man to me.

The last few days Jaisal has been waking up like clockwork at 5 am. He is so tired by 8 am that sometimes I can't keep him awake. After labs one morning, he fell asleep in the car. I got him home, partially undressed, and then decided to just leave him sleeping like this on the floor. As I said to Kirk when I texted him this picture, our kid is amazingly cute, but crazy as all hell. I really really wish he'd consolidate his sleep.

On Thursday, we went to Salvage One to "help" Ann, Brendan, and Ellen with some pre-wedding decorating. All Jaisal wanted to do was sit in this floral chair and observe the work.

Anjali came to visit us Friday morning. She tempted both Jaisal and I with some crepes from the French Market. She'll be moving to Switzerland next month, and we're hoping we can go visit in the summer (before Jaisal turns 2 and we have to pay for his airfare) and explore Jaisal and Kirk's roots in the town of Gersau. I am hoping Sir Oliver enjoys travel as much as Kirk and I do and stabilizes enough to allow us to take a trip.