Charlotte's Journey Home

Just a Regular Kid, Sort Of

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2 Good Days

Saturday and Sunday—two good days and two good nights.
Charlotte is getting “bolus” feeds, meaning that she’s getting a set amount over 30 minutes every 3 hours to mimic a regular feeding schedule. They’ve dialed back the Vapotherm a tad as well as the NO. Taking it slow. Thinking of the tortoise—slow and steady wins the race.
Am off to see her now.

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Later That Day

Phew. Today was a good day. We visited Charlotte for a little while this morning, as I think I wrote earlier. She was calm, peaceful and had been so since just around when I talked to her nurse at 1 a.m. We left her in the calm, capable hands of nurse Eileen. Then we skedaddled because we all decided that too much stimulation would jinx it. We returned around 4 pm to find that the little darlin’ had been asleep almost al day. Her blood gasses were quite good, slowly decreasing all day. The last one I saw, around 7 p.m., was under 50 which is within normal range. And, her respiration rate hovered in the 25-40 range all day, also normal.

We heard that she fussed a little around 1:30 p.m., but who wouldn’t fuss when there’s been no food in +12 hours? When her feeds started again, and she’d had another good cuddle and swaddle (courtesy of Nurse Sheri, the self-proclaimed “baby whisperer”) she settled right down.

Thanks to all of you for your emails and calls in the past few days. It means so much to us and Charlotte is lucky to be so loved by all of you.

Fingers and toes crossed that tonight is a good one and that maybe, just maybe, we’ve crossed a bridge of some sort here.

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Early a.m update

1 a.m. (Yes, I called the PICU to check on Charlotte. I was awake…..): Little Charlotte was a handful after Philippe left. Fussy, inconsolable, crying for hours. The nurse told me that they had to “help” her by holding her and that intubation was imminent. You probably don’t want to get me started on the nurse and our conversation. Suffice it to say, she emphasized that if she could get the fellow alone in a room and discuss Charlotte, the baby would be tubed by morning. Did I sleep after that? You decide.

7 a.m. We got to the hospital and Charlotte was resting comfortably, swaddled in a pink blanket and looking a bit like an ice cream cone. Turns out she’s been peacefully asleep since just after my conversation with the nurse.

8 a.m. Morning Rounds: As Robin, the MD fellow, brought everyone up to speed, we learned that it had been Robin who decided Charlotte needed to be cuddled and cuddling calmed her down. The nurses thought that the baby was having brief (6-8 seconds) periods of not breathing, but Robin said that she did not experience that. This confirmed a nurse/physician disagreement from yesterday as well. Bottom line—her blood gasses are slowly improving, her respiration rate is slowly coming down to a normal range and she’s comfortable. For now. Her surgeon, Dr. Mavroudis, changed nothing except for lowering the dosage of Milrinone, the only IV drug she’s on. We’re hoping they’ll start her food again today (it was suspended in anticipation of reinserting the ventilator. So the kid is hungry. Don’t know about you, but I’m a bit of a crab when I’m hungry, too). We’ll be in the PICU at least through the weekend. If things stay stable like this, we can hope to see her grow and have a positive outlook for next week. However, as we all know, a few hours can change everything.

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Hour by Hour

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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CO2 Elevation

The chest tubes came out yesterday. It’s so nice to be able to just scoop Charlotte out of her crib, even if she’s still attached to what I call “spaghetti”—monitors for respiration rate, pulse, blood oxygenation, heart rate; arterial line through which blood is drawn (so they don’t have to prick her every time); main line (through which medications are delivered); and an NG tube for feeding.

Since the ventilator was removed, Charlotte has been on oxygen, delivered through a nasal tube called a cannula (like what you see on TV all time). For first day, all of her tests came back normal. Then, she was placed on the methadone treatment—not only was she stoned out of her mind (the medical term, I swear J), but her breathing got more rapid. I noticed all day on the 29th , that her respiration rate was consistently higher than we thought it should be. She didn’t seem uncomfortable and the nurses at first thought this was the normal high/low breathing pattern of a newborn.

That evening we got a phone call at 11:30 pm from her nurse. My heart stopped. Literally. It turned out that a test that evening showed elevated CO2 levels. Translation: her breathing was more labored and her blood gasses are not properly balanced. Because she did not seem to be “retracting” (using non-breathing muscles to breath), the first step was to put her on a Vapotherm cannula. This delivers humidified oxygen with a higher pressure than the regular cannula, opening her airways for more efficient oxygen delivery. Michelle, the nurse on duty, wanted to let us know so that we wouldn’t be surprised at a new machine in the room.

So far (since that midnight call), Charlotte’s CO2 levels have come down, but not quite enough. It seemed that she’s plateaued. This morning, the doctors told Philippe that they will go slow to treat. They’re giving her time to figure it out, recover, and her blood gasses right on her own. Chalking it up to slow recovery because she’s so tiny, I think. We were worried, though, because they implied that the next step would be to re-intubate her (put the ventilator back in).

Philippe and I have been frustrated that they were treating the symptom, not finding a cause. Well….Philippe just called and it seems we have a cause for the CO2 elevation and, now, a treatment that is working. The theory is that Charlotte is experiencing metabolic alkalosis, an inability to regulate her pH level, brought on in her case by the 2 weeks of diuretics (Lasix) she’s been getting. Since the attending and the nurse came up with this, Charlotte has gotten two doses of ammonium chloride and her CO2 level has come down steadily. Since it’s the night crew that is determining this, we’ll have to see if the primary doctors want to continue this course of action in the morning. But for now, Philippe says she looks more comfortable and relaxed than she has in a few days.

A factoid:
In the US: Metabolic alkalosis is the most common acid-base disturbance observed in hospitalized patients, accounting for approximately 50% of all acid-base disorders.