Charlotte's Journey Home

Just a Regular Kid, Sort Of

Hour by Hour

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It seems like things change by the hour, or at least with every blood gas test which occurs about every 6-8 hours. Up, then down, then up, then down.

6/2 Morning Rounds, 7 a.m.: After they put Charlotte on the Vapotherm and the ammonium chloride, things seemed to improve a bit. Her CO2 level improved and her respiration rate seemed to be coming down. The doctors changed her prescription cocktail again—increasing her Milronone to reduce pulmonary artery pressure and adding an additional, potassium-saving diuretic for the wet lungs. Everyone was still concerned that Charlotte hadn’t gained weight. Concerned enough that she now has a weight chart taped to the crib.

6/2 Afternoon Rounds, around 4:30 p.m.: By afternoon rounds, however, the respiration rate was high again and the CO2 creeping up. Believe it or not, the doctors added Viagra (!) to the cocktail. It is apparently an oral version of the nitrous oxide that she received through the ventilator. So, now, Baby Charlotte has used K-Y jelly (to attach a bow to her head), has had a morphine habit and a meth cure, and is on Viagra. Talk about living the high life early!!

6/3 Morning Rounds, 7 a.m.: In morning rounds today, the doctors seemed pleased with Charlotte’s progress. Her respiration rate was down in the 40-60 range and her CO2 level was improving. She gained weight, too! From 2.39 G to 2.6 G. 200 grams is, of course, a huge weight gain and probably a scale issue—20-40 grams would be normal weight gain.

As the nurse practitioner put it to me at 8 am this morning: Yesterday at 4 pm, Charlotte was tracking toward needing to go back on the ventilator and this morning she was tracking more toward not needing to go back on the vent.

Well, like Chicago weather, wait a while and things change.

6/3 1 p.m.: Lori, the nurse practitioner, called me at home. Seeing “Children’s Memorial” on the caller ID made my heart stop. The scoop—with the noon blood gas test, Charlotte’s CO2 level was up again. While her respiration rate is not creeping too high yet, her breaths are shallow. So….they are putting her back on the nitrous oxide, administering it through the Vapotherm cannula. This is, as far as I can tell, a last ditch effort to avoid re-intubation.

(Writing at 1 p.m.) To be frank, I’m not too optimistic that this will work. I’m pretty sure we’re looking at the ventilator tube. I’ll probably know in the next hour or so, as they were going to another blood gas to check results quickly. If she has to be re-intubated, little Charlotte will be in ICU for at least another week or two. The idea is to let her rest and grow—right now she’s using all of her energy to breath and that is why she’s not growing.

6/3 2 p.m. (just as I finished the first portion of this update): Lori called again. Blood gas tests taken after the addition of the nitrous oxide showed a “tweak” of an improvement in the CO2 level. Based on that, the doctors planned to let Charlotte continue on this path and even out by herself.

Afternoon rounds, 5 p.m. The nitrous oxide has been raised to the highest possible level. Charlotte appears to be breathing comfortably and her CO2 level is down to 56. Normal level would be between 40 and 50, so this is a turn in the right direction.

Philippe and I went for dinner at 7 p.m. Afterwards, Philippe went back up to say good night to Charlotte. At 9 p.m. Philippe walked into the house and said, “Don’t be surprised if she’s intubated by morning.” Her breathing is labored again, etc. And, while the cardiovascular team was pushing to let her recover on her own, the PICU team is inclined to intervene a bit earlier. Overnight, the PICU team is in charge and (in my opinion) the nurses have a lot of influence over what the fellows and attending physicians ultimately do (as we saw with the methadone treatment last weekend).

By the way, they stopped her ammonium chloride today and it seems that the docs are leaning toward respiratory cause for all of this, as opposed to the metabolic cause discussed yesterday. Lori told me that high pulmonary artery pressure is quite normal in newborns—since the placenta does the work of lungs in utero, the lungs need to stabilize and learn how to maintain pressure. Normally, this stabilization occurs within 6 weeks of birth. With Charlotte, the congenital heart anomaly meant that pre-surgery the lungs were not able to even out the pressure and there was too much blood flow. Some of what we’re battling is, then, an artifact of Charlotte’s lungs not being able to start stabilizing until after the surgery and having to start at a more compromised place than the average baby.

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Author: Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

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