Saturday, November 29, 2008

3.5 pounds!

From Gigi and Julian on Day 50

Jules, not to be outdone by all of us tub-o-lards from Thanksgiving, packed it on yesterday for 47g., bringing him way over 3.5 lbs.

He continues to struggle with trying to breath less frequently, the current attempt at 4.0L high flow appeared to be working somewhat this AM, but I think we'll learn it hasn't made a difference, having seen him this PM.

Also, Gigi went to tea with Nana, Grandaddy and Joy:

From Gigi and Julian on Day 50

Thursday, November 27, 2008

happy thanksgiving

From Julian's First Thanksgiving

- No I'm not trying to breast feed.
- Bad things in Mumbai today. Pray for those impacted (I guess we all are)
- He gained 43g. Let's hope that keeps up.
- X-ray of lungs not interesting, a little hazy.
- No info on neuro consult yet.
- Julian is back up to 150ml/kg - he's back to more fluid (and thus more calories)
- Joy made great turkey dinner.
- Whole family went to visit.


Wednesday, November 26, 2008

erev thanksgiving

From Julian on Days 46 and 47

From Julian on Days 46 and 47

- Going from 2.0L on high-flow to 3.0L on high flow. This should allow him to take fewer breaths. Right now his respiration rate ranges from 50 resp/m to 110 resp/m. High variance - we'd like to see it be around 60. Also his oxygen requirement is down to 33% with this new change.
- I held him for a good long while last night -- and fell asleep. Joy held him tonight.
- I advocated for a neuro consult for the brain stuff, if it's so rare perhaps having an expert take a look would make sense?
- X-ray coming tomorrow
- Weight gain is less than 20g/day for last 10 days. We'd like to see that go better. Too many changes today, so we wait.
- Are you annoyed with all the mismatched units? I am. Seriously can we stick to imperial or metric. Make up your mind people.

Tuesday, November 25, 2008

high flow working?

As you may recall from yesterday, Jules returned to "high-flow" because his pCO2 was 67. As of last night it was down to 57. Also, that 57 number was an "aterial blood gas", which means that it's more accurate. (So was it the measurement or the high flow?)

He gained 21g today and now weighs 3 1/3 lbs. About 4 times smaller than the smallest turkey any of you folks are cooking.

Monday, November 24, 2008

Back on high flow


Quick updates.

CO2 in blood high. So he's back on high flow. That's a regression and part of the broader respiratory mire we'll be in for the next while. They've also reduced his fluids by 10ml/kg to 140ml/kg. In theory less fluid will make less work for him to do, more time for his heart/lungs to get better.

Cranial Ultrasound showed that the ventricle assymetry is less and the one ventricle is still "dilated" but no more so than the before. So this seems ok.

I held him for a good 1.5 hours today. He fell asleep after I sang to him.

And what about the flat head (toaster head). Well..he likes sleeping on his side -- he has breathing issues when he sleeps on his back.

Friday, November 21, 2008

Shabbat Shalom: Happy 6 week birthday and 3lbs!

Jules is 6 weeks old. The diuretics seem to be working, his oxygen requirement is down to 32% and he's has safely cleared the 3lb mark! Joy held him for a while today and he stayed very happy and oxygen saturated. This is a good end to a fairly stressful week that began with fluid retention.

I think the big picture now is that we're working on 2 things. Get him breathing on room air and more slowly and getting him to start feeding orally. The breathing thing is going to go on for at least a month. Basically all the oxygen pumped into his lungs over the last 40 days or so ends up damaging his lungs and creating scar tissue. Also he has started reataining fluids (in his lungs) this compounds the problem. This means he continues to need more oxygen. To address this - for real - he needs to grow and create new lung tissue. That takes time and diuretics.

He also needs to learn to feed orally. This means he has to coordinate the suck-swallow-breath mechanism. Typically this happens around 32weeks (he's 35 1/2 weeks now). But he's small and his lungs are small and he hasn't really shown an affinity to the pacifier. This is something to work on.

My dad's sister and her son are visiting. More fun for Gigi.

Thursday, November 20, 2008

diuretics working?

He's on some new diuretics as of 1pm today. They are little less "harsh" as lasix. He seemed really great this evening. I held him for an hour and he cried like a baby...

Joy Posting

I visited Jules this morning. They found a large weight gain of fluid again and started him on two different diuretics to try and get the liquid out. He is on 38 percent oxygen right now and they are hoping that if these meds work, he will need less oxygen and the number will go down below 30. 

day 41

Unremarkable night.

begin groan...
  • 3 nurses who have never taken care of Julian in the last 12 hours. 2 of whom are "per diem" (aka contractors). annoying.
  • did not weigh him in the night. annoying.