Today was a much better day.
Sidenote: I would not for a minute say that yesterday was a bad day in the hospital. Yesterday was an exceedingly frustrating day in which I saw the inefficient side of a teaching hospital. Having had a critically ill child in the hospital before, I can't say that it was a bad day. Bad days are ones in which serious conditions worsen, you get new diagnoses, you wonder if you will ever take your child home. Compared to our happy life outside the hospital, yes, yesterday was a bad day. But inside the hospital, yesterday with my happy and healthy though medically enigmatic little girl was just one of those frustrating days. But not a bad one. End sidenote.
Whatever you want to call it, today was a much more pleasant day. Even though I talked with the (new) attending and 2 fellows for probably close to 45 minutes during rounds today (fyi, if you haven't been in a hospital before, that's a pretty long time, especially on the weekend) and both John and I had a follow-up for another 45 minutes with the senior resident on our team later, we still have some unanswered questions (but not the full list of 15, at least).
We did learn a few things and make some changes. It turns out that the new attending was under the impression that John and I are on board and had (metaphorically) signed off on the g-tube surgery, which is not the case. I think I've mentioned that I am more okay with it than John, but we both have to be on board, and the more I've listened to his hesitation, the more it's becoming contagious. We just want to make sure that surgery a) will fix the problem; and b) is just about our last resort. I know it's not a bad surgery or anything, and all the mothers I have talked to whose kids have gotten one have been tremendously relieved, but it is surgery, it is another kind of special need, it is another thing to worry about, and it is another scar. We're definitely not saying no to the surgery, but we want to make sure that it's the right choice. (I mean, have you met us? I may sound spontaneous at times (all talk!), but I am a METHODist, and John Hill is, well, John Hill.)
Of course, then, we are looking closely at her growth in light of the overnight tube feedings she has been getting. She's been weighed most mornings between 7 and 8 (unless otherwise noted), totally stripped down and on the same scale. Here's how her growth has gone:
- 6/28 at 8 pm (the night we came in): 7.445 kg
- 6/29 didn't get weighed (not sure why...maybe because the day before's measure was at night?)
- 6/30 7.575 kg (+130 g)
- 7/1 7.605 kg (+30 g)
- 7/2 7.615 kg (+10 g)
- 7/3 7.510 kg (-105 g)......................for a net gain of 65 grams (which is a little over 2 ounces)
When John and I were looking over her stats earlier, we didn't have her first weight in front of us, so we were pretty disappointed with her growth and not at all convinced that we are seeing enough gain to warrant surgery. I haven't talked to him since I pulled all the numbers, but things do look much better when you take the initial weigh-in into account. Still, though, to keep it in perspective, let me tell you that she pees about 75 grams a night, so we're still not talking earth-shattering improvement. And, as you can tell, she could easily drop again, but it is good to see an overall gain over the course of 5 days. Tomorrow will probably be high since she ate pretty good amount, didn't poop, and even though she threw up again, it wasn't quite as much as usual. (By the way, a kilogram is 2.2 pounds, so today she was right at 16.5 pounds.)
We are concerned that when she does throw up (about 2 out of every 3 days, always while eating solids), we often see undigested pieces of food from the last meal, often several hours ago. This coupled with a family history (with cousin Emma) of motility issues (no, not mobility issues, for which you should call The Scooter Store or get a Hoveround depending on whether you just want to get around your home or visit the Grand Canyon - yay Price Is Right commercials!), we (meaning John and I and the one resident we have convinced) are concerned that there might be some
gastroparesis going on. Basically, it means that the muscles in your stomach don't move food through efficiently so it sits there for a longer time, wasting nutrients, making you feel full, and causing you to vomit. The folks in nuclear medicine will do a gastic-emptying test to diagnose it, and we'd treat it with meds. That test has been ordered, but it likely can't be done until Tuesday since it's non-emergent (and Monday is a holiday).
In the meantime, we are trying a different formula. So far, we've been using the same formula she gets in her sippy cup in the n-g tube (Boost Kid Essentials 1.5). Tonight we are going to try
Peptamen Jr. 1.5 and see how she tolerates it. Calorically (caloricly?), it's the same as the Boost, but it's easier to digest, so it may move through more quickly and/or just make it easier for her body to suck out the nutrients without burning as many calories. We're also increasing the rate, so that instead of getting 12 ounces over 8 hours, she'll get closer to 13.5 ounces. (We may go up again, but you don't want to increase volume too quickly because it can increase vomiting and other issues. This is an old NICU lesson we learned again and again - remember "working up to full feeds" and such?) Because she's getting the formula at night, she is drinking almost zero formula during the day. We keep offering it like normal, but she has had maybe an ounce or two each of the past several days. She's just not at all interested in it. This means that we're only at a net gain of 2-3 ounces of formula intake (with feeds being given at the current rate). If we are going to do surgery, we're going to have to maximize that gain. (Though it is much easier for
me to give her milk in the tube at night rather than pushing it all day, we've got to think about what's going to work best for her in the long run.) The night feeding do seem to have decrease her appetite for breakfast some, but, frankly, about 90% of breakfasts for her end up being non-meals normally anyway (a handful of cheerios and a strawberry or something like that). Lunch and dinner seem to be about normal, though since they only have chicken tenders here (and not chicken nuggets), we are relying solely on shredded cheese (and the formula at night) for protein. (Becca, like a decent number of other toddlers, will only eat nuggets, not tenders. Don't ask me why, but it's the truth. No matter what you do, she somehow knows it's a tender and not a nugget.)
We also talked to the docs about possibly treating her with an appetite stimulant. They were really hesitant to go there because apparently the ones they typically prescribe have some neurologic side-effects. They typically only use them for anorexic teens (and adults, I'm assuming, but we're in the kids' hospital). I'm looking into some other options along these lines, though. For example, I have a friend whose daughter is on a particular antihistamine, one of the side-effects of which is increased appetite. She's gained a couple of pounds after being on it for a shortish period of time. And, hey, maybe it would help with the nasal allergies she seems to have inherited from both of us! If any of you have thoughts on this topic, I'd love to hear them!
I'm also pushing the doctors to look outside Vandy and talk to some of the doctors who have dealt with kids with similar histories. John and I both think that given her incredible struggle for survival in the womb, when she wasn't getting nutrients and went for weeks and weeks without showing any growth at all, her metabolism might just be set funky. I mean, nobody has been able to tell us that this isn't the case, and they can't quite figure out why she isn't growing when she is getting a decent number of calories (though not as much as they would like), so why not do some
research and see what you can find. I even suggested talking to some of her neonatologists (which spell check wants to correct to "paleontologist," by the way) who did such research when they were caring for her. One doctor made the mistake the other day of telling me that the attendings see cases like this all the time, and they know exactly what needs to be done. Frankly, that is simply not true. We've had problems with growth since before week 15 of the pregnancy. She's got an incredibly complicated medical history. She's the smallest kid they've seen here. But even if she weren't, even if she was a strictly "textbook" case, attendings don't know exactly what to do just because they have seen a lot of failure to thrive kids. Every single one of them is different, and they have to be looked at that way. I feel like the attendings (generally) understand that, but, wow, I think it's an important lesson to learn when you are in training.
I think the doctors were seriously considering discharging us today or tomorrow to do n-g feeds at home, and then schedule surgery outpatient (though we would stay for a night or two post-surgery). I emphatically (but politely) told them that I am not ready for that. We still don't have answers, we haven't finished all our tests, we're still experimenting with new formulas, rates, and volumes, we still need daily weight checks, and we haven't settled on a plan of care. As hard as they are to get to inpatient, they are almost literally impossible to get to outpatient (but you've heard me talk about that before.) I am not going to leave until we know what is going on (or until insurance refuses to pay, of course ;) ). And if we do decide to do a g-tube, I'd rather do the surgery while we are here instead of uprooting Becca again, going home for a few nights, and then bringing her back here (and waiting for a surgery slot and then for a room afterwards - ugh) in the near future. I'm sure they would have liked to have discharged another patient before the holiday, but tough luck. (Our 12-bed unit, by the way, has been full or nearly full all week, but by this afternoon, there were only 5 of us left.)
I'm sure there's more to say, but I'm out of energy, and I'm sure you are sick of reading. Thanks for your patience and encouragement. By the way, I didn't contact patient affairs today. After speaking with nearly everyone involved, I am confident that the people who made mistakes now know what to do in the future, and now that we are through the, um, troubles (Jon Stewart would have another word), that's all that I care about. And, as one friend told me, at the beginning of July, everyone except the attendings are scared to death because everyone is new in some way (interns come on, residents move up, chief residents begin, fellows begin, etc.). If the problem has been rectified, no need to make it worse. As long as they continue to get it right, that is. I'll fully forgive and forget when we are done with this stay, these doctors, etc...but for now, I'll practice my (polite) hermeneutic of suspicion. (Thanks, Candler.)
