Holy Goals List for Today Batman!
Today Rowan had lots of exciting goals:
Get off Nipride (blood pressure medication)
Get a Neurology Consult
Remove Pigtail Chest Tube
Switch the NAVA vent setting
Start Clonidine (a drug)
Restart Lactulose
Step 1:
Get off Nipride - they basically just turned it off and his blood pressure is fine. Check!
Step 2:
Get a Neurology Consult - ok. So last night, Rowan was mad. He rolled his eyes and didn't take a breath for ten seconds. My personal, non-medical thought was basically "yeah...babies do that. He's sedated so he rolls his eyes and babies don't breath like we do." Matt's medical opinion was "yeah, babies do that". But - since we are in the Intensive Care Unit - if Rowan hiccups - we need a consult and lots of expensive tests. They attached lots of little leads to his head (great picture to show on prom night) and watched about 16 lines go up and down for an hour (this is called an EEG). Nothing exciting. A Neurologist came and made Rowan look different ways, freak out when she clapped, and wiggle his toes (she was awesome - and this was actually kind of fun) and she said he looked pretty good. They did an ultrasound of his head and it was unremarkable (which is great when you're Rowan). So they are now watching him on the EEG for 24 hours to see if they can catch him not breathing for a while on it. We think he's fine. If they tell us he's not, we'll worry. Until then, it's just funny to look at his rediculous teeny tiny head. But the consult was done so - Check!
Step 3:
Remove Pigtail Chest Tube - fluid went down to basically nothing. X-ray looked good. Chest tube came out. Rowan seemed much more comfortable afterwards, which is fantastic. Check! (and that fluid better stay gone)
Step 4:
Switch to NAVA - okay - the NAVA makes Rowan breathe using the correct muscles AND lets him take how many breaths at whatever size he wants. He seems much happier. He can take a few deep breaths and then breath a little faster. He can sigh. AND...he can yawn! For the first time I got to see him yawn today as he was drifting off to sleep. I cried a little. One more "normal" baby thing my son can do now. It was awesome. The NAVA setting should help him be ready for extubation - Check!
AND
Step 5 and 6 are boring and not extremely significant so, eh. Check!
I think teachers have a magic power when it comes to writing on white boards. Somehow, if I write the goals on the board, Rowan seems to actually accomplish them.
Tomorrow, I'm going to write: poop money - just to see what happens.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
:) I don't know if I'd want him pooping out money just yet. The doctors would probably run more tests. Let's have him do that in a bit, when he's out of the hospital!
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