Wednesday, November 29, 2000
Mommy and Daddy are very pleased with the care I'm receiving from both the doctors and nurses. We're learning, however, that some of them are unfamiliar with my complicated issues. That’s OK though because Mommy and Daddy know EVERYTHING about me!
The nurse didn’t get into any trouble with her boss over miscommunication with my team. Her supervisor said to continue advocating to get me home and to step on some toes if she has to. The staff rotates every month, so I'll be getting a new team of neonatologists on Friday.
Today I met an orthopedic hand surgeon who checked out my thumbs. Mom tried to get me to do the thumbs up “Fonzie,” but I was fast asleep in her arms. He said that my thumbs are smaller than normal, especially the left one. They appear to be functional but could be restricted if the webbing between my thumbs and index fingers is too tight. That can be fixed if necessary, and he recommended we follow-up in about six months. Mommy and Daddy are confident that my smaller thumbs won't interfere with my golf grip!
Speech therapy was giving me a bottle today when Mommy arrived. They were finally able to catch me when I was awake! I did really well at initiating and sucking on the bottle, and I didn't seem stressed at all. Unfortunately, my suck was still too weak to pull out any formula. Mommy and Daddy want to give me at least a couple months of trying with the bottle before making any decisions about g-tube surgery.
Mommy and Daddy did my bath and trach change tonight. I now weigh 5.3 pounds. Daddy scrubbed me down while Mommy got all of my trach care prepped. I was pretty fussy for bath time. Mommy and Daddy are doing really well with my trach care, although they could get a little more efficient!
Tomorrow will be another busy day. Mommy and Daddy have my meeting about discharge in the morning, and I am getting a CT scan in the afternoon. The doctors want to sedate me for the scan so that I won’t move. I'll probably be sleepy for most of the afternoon. Neurosurgery, Orthopedics, and Craniofacial teams will all be reviewing my scans. Ortho wants to look at my c-spine and vertebrae, Neurosurgery wants to see the gyrations of my brain, and Craniofacial wants to check out my jaw.