A Better Day!

Today Jaime had a better day!
He was pink and pretty puffy (due to the extra blood and fluids), but over all much more stable than yesterday. His labs were better as was his chest x-ray. Dr. Gruppo (Hem/Occ) said that the elevated bleeding time had to do with Heparin in Jaime's blood. The Heparin thins blood, but it is necessary for flushing Jaime's picc line and arterial line. He does not receive a lot, but the way that Dr. Gruppo explained it was over time it builds up and then you get abnormal labs. We'll see these labs change once the arterial line is d/c'd.
While Tom picked Jared up from school, I helped Jaime's nurse, Tammy with his dressing changes. In the middle of changing them, Derm came to check on him. Jaime officially got to lose some of his mummy dressings...YEA! That's not all he lost today...he lost his IV in his head (that came out last night), he got his Replogle tube removed (this was the tube in his nose that sucked stuff out of his belly) and he got his Nitric Oxide weaned to 10. Tomorrow it will be at 5, then on Friday (if all goes well), it will be completely off. This is a really good thing! Renee, the R.T. told us that it costs about $3000 a day, it's a close second compared to the cost of his Factor a day. Thank goodness for health insurance!
Anyway, the Replogle will be replaced with an NG tube. This tube will go in his nose to his belly, too, but it will allow him to start his feeds. It is likely that feeds will start by the end of the week. We were told that they start with 1ml of milk an hour. If that goes well, they'll increase it.
Jaime is set to have another ECHO on Friday, if that is good, the next step will weaning towards extubation. We're looking for that to happen possibly next week. Once extubated, we may be able to take steps towards oral feedings. First they dip his pacifier in breast milk and have him suck on that (we may be able to start this before extubation as Jaime loves his pacifier), then they slowly move to the bottle. CDH babies tend to have really bad reflux and oral aversions, so the feeding process is very slow.

Jared's well, missing his friends from Wickliffe! (Thanks, Mrs. Wollschleger for sending Jared cards from his class and for organizing a fund raiser for us!)
It's been stormy and rainy here most of the day. In fact it's thundering and lightening as I type. Jared got to go up in the playroom at the hospital for a while, he really enjoys it up there. Then, we came back to the house, he played with his toys while I packed a few thing for Tom to take home. Tom's coming back to Cleveland on Friday to play a few gigs this weekend. If anyone is interested, Tom's band will be playing at the Hemophilia Black and Blue Ball at Windows on the River on Friday at 7:00 P.M. and at the Willoughby Brewing Company on Saturday at 9:00 P.M. If you're in Cleveland and available, feel free to attend either gig!

Anyway, that's my update! When we go back tonight Jaime should have his NG, but here is a photo of Jaime from this afternoon with his nose tube-free for the moment! He's also less mummified! :-)

Enjoy, have a nice evening,

~Sheryl

P.S. Carter is doing AWESOME! He's going to get to start feedings BEFORE surgery! From what we heard, this almost NEVER happens! He's getting closer and closer to his repair everyday! GREAT JOB, CARTER! Keep up the fight, "tough guy!" We think that Jaime and Carter are sending positive vibes to one another through the Pod glass window! HA! We're thrilled to hear and share how far he's come, as well! :-)