How is Nora doing??

If all a person ever saw of Nora were the pictures in the collage accompanying this update, that person would be tempted to wonder what all the fuss was about. When she’s not doing as well, it doesn’t exactly occur to us to grab a camera. Also, her shocking wrinkled skin on her arms especially doesn’t tend to get included in the viewfinder.

About twice in a twenty-four hour period a resident will come and ask, “So how’s Nora been doing?” (I think this is a scheduled check-in to get the parents’ opinions). Whenever I open my mouth to answer that question, it feels like the answer is too big and garbled to make it out of my throat. I end up saying something like, “Well, her saturations were good most of the night, but she went through some low times, I was pleased to see her heart rate reduced, so maybe the diuretic is working and there’s more room in there, but then this morning she’s had to endure a few procedures and seems to be recovering slowly, but we’re not sure if it’s that her hypertension is worse today, and then she slept o.k. for a few hours and then was pretty restless for much of the rest of the night…”

a) That is a run-on sentence: a whole lot seems to be happening all the time
b) It is not a direct answer: it is totally unclear to us whether things are improving
c) My brain is getting fried from trying to synthesize so much information

We, in short, aren’t really sure how Nora’s doing. At this point a general average of the medical opinions we’ve been presented with recently would probably be something like the following:

First, there are no guarantees anyway but especially not for your kid because she’s kind of uniquely unique, medically speaking. Second, she clearly has an underlying issue of pulmonary hypertension which is playing into everything in ways that are never helpful, nor very predictable. Third, we think you’ve been overfeeding her (as per UVA instructions) now that the feeding tube enables that, and she can’t handle the fluid volume, which has resulted in pulmonary edema (waterlogged lung tissue) which may take some time to resolve, but which we think we know what to do for. Fourth, your daughter is picky about her oxygen delivery system and has selected one that usually is only used in the ICU, so she’ll have to improve a little and get on a homestyle oxygen delivery system before she’ll be considered stable enough to go home, and we don’t know how long that will take. Fifth, we don’t think your daughter is sick enough to be in mortal danger right now and we think we’ll be able to stabilize her, assuming she follows a somewhat typical human health pattern in terms of lung disease recovery.

Since nothing seems to make much sense to us right now, it’s hard to tell if their optimism is sensible or not. We are certainly in no state of mind to judge. I am personally doing my darnedest to keep up with all of the new lingo that comes with each layer of discovery about my daughter’s medical profile, and I think I’m doing a pretty good job of that, considering. But while I have a strong need to keep abreast of the medical issues at stake, I am realizing that it is for the purpose of doing my real job of being Nora’s daddy. She has some of the finest medical professionals in the world racking their brains about how to bring her around…I cannot imagine that my troubleshooting or diagnostic contributions could be anything but dangerous to her if pursued, since my understanding of medicine extends mostly to those parts of that vast body of information to which I have been exposed through their being of immediate and critical pertinence to the health of those close to me.

That is not to say that I feel Janelle and I should passively accept the treatments recommended to us for Nora without question. I think our role as her parents is vitally important to her making it through this feeling as o.k. as possible. And that, in turn, is a substantial contribution to a positive outcome for her in two ways: First, people who feel better do better, generally. Second, what’s the point of getting better if you are too miserable to benefit from it? So far it has seemed that, besides providing the animal and human comforts she expects from us (cuddling, stroking, interacting, reassuring, warming, etc.), we are the guardians of her personal needs. We are the only ones who can guess whether she’s bored or anxious or in pain at any given time. Also, she trusts us to respond, and so she expresses her needs to us, when she might not to others. A professional care provider is focused on changing her medical situation to a more promising state, but can have no concept of whether the timing of their intervention is appropriate to the patient’s daily routine or current needs.

An example: Nora was doing pretty well with her oxygen this morning. Dr. Lehman bumped her down to 1 liter on high flow and she didn’t seem to notice, so they transitioned her (fairly roughshod, in our opinion) to the garden variety nasal cannula. This went not all that well, but she managed to eat afterwards and go to sleep on a higher oxygen requirement than we expected; still she was stable. Not five minutes after she zonked out for a precious nap, the echocardiogram team showed up. It is not possible for a 7 month-old child to sleep through that procedure. By the end of it, the x-ray lady was skulking around hoping for a picture of her chest, and she was needing more oxygen yet. After more feeding, the x-ray, more feeding, she was settled and napping again with me holding the extra oxygen right at her face to keep her saturations up while she slept. She had been sleeping a few minutes when the respiratory therapist, who is very good at his job, I think, burst in and let me know loudly that he wanted to switch her back. I bit my tongue and whispered to him that I preferred to wait until she finished her nap, was willing to hold the oxygen mask the whole time to keep her levels up, and would wish to talk to a doctor about it if he felt uneasy about the idea. He kindly went and fetched the doctor, who seemed to be treating me gingerly when he arrived, but we soon agreed (after he heard about her morning) that we had time for a nap, as long as I understood his tune would change if her oxygen levels dropped. I assured him mine would too. We smiled at each other, they left, and Nora got her nap. I don’t think it’s arrogant of me to feel that Nora woke up feeling a little better, and her afternoon began to improve from that point on (probably more due to getting on the right machine again, but still…).

Learning the ropes, Jason