Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Thursday, July 29, 2010

Joel On Paper

A friend of mine tonight asked for Joel's diagnosis, and I'm not sure if I've actually given it all out at once. Joel on paper can sound a little scary, but at the same time, when keeping up with the progress he's made so far, it's exciting to see him on paper and think: that's not Joel anymore :)

Joel's Diagnosis:
Transposition of the Great Vessels
ASD & PDA (atrial septal defect & patent ductus ateriosis)
VSD (apical muscular ventricular septal defect, surgery not needed)
Grade 3/Grade 2 bilateral head bleeds
Congestive Heart Failure
Convulsions in newborns
Lymphatic Clots
Multiple Venous Thrombosis
Obstructive Hydrocephalus
Chronic Pulmonary Hypertension
Pulmonary Embolism (lung clots)
Atrial Tachycardia
Chronic Respiratory Failure

Tuesday was another awesome day of appointments in Tacoma. Joel went through a lot and he slept through the night and most of wiped him out. First up was neuro. Dr. Korol said that his phenobarb levels were low when we left the hospital (17 out of a range of 15-40,) and he's gained 3 1/2 pounds since then. There's a good chance that the phenobarbital he's on (for seizures) is at a theraputic level and may be dropped or weaned soon. We're waiting until the results of Friday's EEG first to see if it shows that he's still proned to seizure activity. My prediction is that Friday night, Joel's phenobarb will be getting autographed...with a DC on the front...(discontinued :)
Feeding/Speech didn't go as well. At 4 months, babies can start deciding to suck on a bottle at will, versus by reflex. Since Joel never had to figure that out before now, he's deciding that he'll "pass" on taking a bottle...regardless of the taste of the contents. I was a little bummed, seeing as bottle feeding is fun for the family. I love getting the kids involved with new babies that way. BUT, maybe I should pick my battles. He takes liquid from a syringe just fine, so I think we're going to start focusing on him getting ready to take food orally (by spoon eventually.)
G.I.: Mimi wasn't happy with the amount or consistency of his stools. Weight gain is at goal, (YAY!) but we discontinued reglan to reduce his motility. I was soooo happy to get him off of this medicine. I took it for lactation (it has many uses) and it made me shaky with no energy...among other unpleasant side effects. Bleeeh!
Our medicines at 8am went from 11 prescription meds to 4. We're on our way, people! :)

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