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Monday, October 15, 2007

Is there a doctor in the house...or one step forward, two steps back

Let's start with the good news: even with all of our insurance issues related to Sharon being between jobs and between coverage (her new coverage doesn't kick in until February, and to call my coverage substandard doesn't even begin to convey the feelings I have about it), we were still able to get Hallie's synagis shots covered this year by Americhoice (the medicaid gap coverage that she has for being so extremely low birth weight). Apparently, they have a very slim window of opportunity for qualifying for Synagis and somehow the stars aligned in such a way as to allow us to avail ourselves of it. Thank goodness for small (and yet very expensive) favors. Given Hallie's weight (more on this in a sec), she would need two vials and the cost would be around 2000 a shot; the total of 6 or 7 shots would set us back around 12K-14K. We earn too much to qualify for any kind of break from the company that makes the vaccine (it's not a true vaccine but a live antibody that is injected against RSV, which causes a common cold in most kids and can land our babes on a vent, or much, much worse). But we also earn too little to pay for it out of pocket. Insurance companies set guidelines for providing these vaccines to micropreemies and others with compromised lung function and a variety of disabilities that are established upon a risk management model; alas, Hallie falls into the high risk category: very low birth weight (under 1500 grams---she was 590 at birth) and long-term demonstrated BPD (bronchopulmonary dysplasia) or CLD (Chronic lung disease)---she was on Oxygen officially into June and is still on an emergency bronchodilator and daily inhaled steroids. These kids cost insurance companies far more whenver even a moderate hospital stay happens (let alone a PICU stay on a vent) than the 12-14K they need to shell out for the Synagis (and they probably get a discount that consumers paying out of pocket don't get).

Anyway, that's the good news.

The bad news: can't say we weren't warned (should've heeded our good virtual friend Laura at Adventures in juggling when she said that we need to keep Hallie out of the ballpit and any other confined space where other potentially snotty kids might play. Alas, Hallie has presented with yet another ear infection. The sort of good news is that this has not kept her from talking---she has new sounds slipping in on a daily basis. The bad news is that the confestion is back, and so is the vomiting, and she seems to do very poorly on her current antibiotic (Augmentin): this has her retching and violently vomiting up nearly all solids. It's pathetic, and painful to watch, and troublesome because...

...we have more bad news: for the first time since May, Hallie has actually dropped a substantial amount of weight. She weighed in at 20 lbs. 13 ounces at the St. Joseph's feeding clinic two weeks ago and 20 lbs. 5 ounces at the ped's office on Saturday. Even if we take into account that the feeding clinic's scale (which dates back to the era of early mesopotamia and still uses weights to balance) runs heavy (which we believe it does), it doesn't run *that* heavy. And over two weeks have elapsed since our visit to Paterson and it is clear that Hallie is dropping weight. This may be somewhat related to increased mobility:

More likely, it is related to Sharon backing off on the middle of the night feed, which is an altogether healthy thing. Hallie simply cannot take in enough calories in "solids" (who am I kidding? What solids? Solids in our world are the consistency of Stage 2 Gerber baby food. That's more like soup than it is like sandwich, and anyone who has ever been on a weight reduction diet knows that soup is a very good thing to eat and sandwich, not so much). My unfortunate realization is that, unless we can get Hallie eating ham and cheese sandwiches (a favorite of her mommy's, and my apologies to anyone out there who respects the laws of kashrut), we are going to be facing a seriously steep upward battle from here on in. Increased mobility + limited intake is a recipe for failure to thrive. So, as soon as we lick this cold, we need to get some more of that delicious Mediterranee Liberte 8% fat (260 calories per 6 ounces, and we're counting) yogurt in the kid, and we need to try to work up to more string cheese and some seriously mushy mac n cheese with added cheddar. Perhaps we can add in a key lime pie (deceptively light, really fattening) or cheesecake. Corn and butternut squash just ain't gonna cut it.

The problem is, though, that NOTHING is staying in our kiddo at all these days, other than a small amount of Nutren and we need to reverse this real soon. No doubt Hallie's reflux meds are slowing down her gastric emptying (we had a milk scan to visualize this on Friday), but did she have to be so concerned with the situation that she decided to empty the contents of her stomach in the OTHER direction? Seriously, though, we do think that this is related to the Augmentin and not to some other problem, and once this gets under control, we need to step up the calories in the food that she consumes during the day and hope that she does not go to college eating only butternut squash and sweet potato puree.

Meanwhile, we're up late feeding her in her sleep again (Sharon does the feeding, and I do the middle of the night blogging). This is not sustainable in the long run. Hopefully we'll have a new plan (or a new antibiotic) tomorrow or, as the Count says in one of my favorite counting videos (The Batty Bat), "Come, we try again..." (needs to be elocuted in a moderately Transylvanian acccent).

On that note, I think I need to call it a night (or an early morning).


Emily said...

I am so sorry Hallie lost some weight. I really hope it is just due to her mobility. I feel so bad for all the people who have to get up in the middle of the night to feed bottles or start feeds. It totally sucks!

Ms.Kitty said...

The pumpkin pie was refunded??? She seemed to be doing pretty well Saturday night, sad to hear that the night went south...

abby said...

Hi Kat,

No refund on pumpkin pie...just on everything she ate before we arrived at your house. We were ok after that. However, she refunded one big lunch on Sunday and three dinners. Very distressing. We're about to go in to see if she can get on an antibiotic that makes her less nauseous. And there is always the unsavory potential that this is a stomach bug on top of a nose/chest/throat/ear bug. Lovely. Can this kid possibly catch a break and not catch a cold?

Dubin said...

Gaak! Why February???

Also, if it makes you feel any better, Sam is getting up MORE in the night instead of less. I know he's younger, but still. He gets up like every hour now. Great. :)

Judith and Jason said...

that just stinks about her ears and weight loss..I remember reading about the balls at Ikea thinking to myself, man, I hope she does not get sick...
Damn... Thinking of you guys!

Anna said...

Oh you guys, it is always something, isn't it! Wish I had some great advice—we LOVE the Liberte yogurt stuff it into skinny henry as much as we can. He gags on any spoon fed foods, but we have discovered he will suck on frozen chunks of it, it is slow going, but it works.

Henry is also on Augmentin right now, and it is the pits, too, he hasn't vomited, but he won't eat at all.

But great news about the Synagis, and my god, if Hallie doesn't qualify, who does!!!

Stay sane, at least you all have each other.

Laura said...

aw man, i jinxed you guys!
i'm sorry your sweet miss is sick. she is so cute in her independence that i find myself hurting for her too as i imagine she doesn't feel good at all.
it is indeed 2 steps forward and 1 step back but you are making progress...just in preemie time. yeah preemie time continues even at this point. we're still on it too in many ways.
as far as her getting sick, remind yourself that kids her age get sick all the time, even if they live in a bubble. allow a little bit of guilt then move on because this isn't the 1st time and it won't be the last but each time she will continue to thrive in a way that she can fight through the childhood sickies. i remember when daniel was1 and 2 to us the big success was staying out of the hospital and the er because that is what normal kids do. you're getting there.
i hope the feeding issues turn a corner real fast. th fact she is walking/cruising means :one she is going to slim down. all kids do even the "normal" ones and two her gi issues actually will gradully improve now that she is more uprightly mobile.

Laura H said...

Hi pals
It was great to see you all last Friday and to hear Hallie babble. I send my love to her and to you both.