August 2: Day +31

Pre-Transplant...

Post-Transplant Day +31

Ugh. The Bachelorette is playing in the background and I think I'm gonna hurl. Three words:

Sick and Twisted! (Sorry - moving right along...)

We got "kicked out" of Bella's room while big Dave turns on the dialysis machine, so we're hanging out in the family lounge. There isn't much room in that room and Dave needs his space which is fine; I like Dave; he's just a big giant teddy bear. He asked us, "Do you guys wanna go get some coffee?" I asked him with a smile, "Are we in your way?" to which he responded, "Well, yeah." No problem, we're not needed and it takes like 7 staff members to be in the room to manage the process.

It's been a good day. Despite Ang and I not sleeping through the night for two nights (must be from breaking up the family unit... awwwww), we were both in good spirits today. Frankly, she was amazed at what a good mood I was in despite how tired I was. I told her that I left all my stress on the lake, so I predicted I would just be punchy/funny/tired today, not crabby/surly/tired, and it worked!

I knew we had a busy day ahead of us, so when I got in and saw we had another new nurse, I quickly began to give her the pep talk. She understood right away as the liver ultrasound tech was already in the room along with the Respiratory Therapist... and it was only 8 am! Turns out dialysis got delayed till 9pm tonight after we took it down at 11:30 this morning. Grrrr.... Turns out, not 1, but 2 dialysis nurses called out today, and it threw the rest of them under the bus. Whattayagonnado?

In other news, Bella's blood pressure has been continuing to wane, and after rounds, I did a little more detective work in my notebook. I found that when we first went on hydrocortisone, we were giving 10mg every 6 hours. Then, we tapered it down to 10 every 8, then 10 every 12. When she was getting 10mg every 12, it wasn't enough, so the BMT doc, Dr. Verneris, suggested that we go back to a "full stress dose." Well, in the time between when we were on 10mg every 6, and when he said, "Let's go back to a full stress dose," we got a new resident. Turns out this resident thought "full stress dose = 6 mg every 6 hours." That equals 24mg a day. Bella was on 40 mg a day. Then, the BMT doc and fellow rotated off and we ended up on 6 every 6. So, after I heard her mention this in rounds today, I told the new BMT doc about the discrepancy and she fixed it for us within minutes. Having said that, her pressures haven't exactly been stellar since, but at least she hasn't needed a saline bolus; she's got enough fluid on her already.

SO, Bella had more little chunks of skin taken out of her left thigh today... BIOPSY day! We will find out whose cells are whose soon enough! We also did a blister test to see how long it takes for Bella to form a blister. We did both these tests the day she had her first Hickman line placed... June 15 I think. Now we can compare results. Can't wait! As you can see from the two pictures at the top, there is an improvement in how her left index and middle finger have healed. We are noticing, particularly on her hands, that she is shedding off layers of old, scarred skin, and the skin that is growing underneath has a more youthful quality.

On inside, here are the numbers:

Weight: 12.5 (up from 12.2... wrong direction, Bella... think thin thoughts)

I/O: +208 (um, not so great...)

WBC: 8.2 (great)

ANC: 5.7 (great)

BILI: 1.7 (great. found out 1.5 is normal)

CSA: 293 (ooops.... wrong direction)

Finally, Ang and I actually - get this - exercised in the RMH gym together! We realized we need to keep getting our stress out through our muscles to have a chance at a good night's sleep. It was the first time I've been on a treadmill since Bella was born, and it looked it, but it's cool, first day back is always the hardest to schedule. Just get in the gym once, and the second trip is always easier (for me).

Alright, it's 10:30 and we're still hanging out with Bella; we need to get home and try that sleep thing again! Love you all for being here. Thanks again.

Fabulous NEW socks! Thanks, Sara!