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Friday, February 27, 2009

The Mother of All Posts...Part One: Surgery

I've been meaning to get to this for over a week now, but once more real life has gotten in the way of blogging. Apparently motherhood of 2 kids--one infant and one with special needs--trumps spending time on the internet. Sigh.

Anyway, before people stop reading this blog/think I've gone on the lam, here goes. Please note that there is no particular order to this post. I just need to get it all out there before I forget the events of the past ten days or so.

So, when I last left off, we were awaiting, with some dread, Hallie's surgery. Happily, all went well. Hallie responded quite well to her "giggle juice" cocktail (this is a mix of versed and tylenol; apparently the former is supposed to enable them not to remember the no doubt traumatic events of IVs and breathing tubes being placed). We, of course, felt like cads for duping her (she was so excited to get in the car early on the morning of the surgery and to play in the waiting area). But really it was the only option. The dentist who actually performed the procedure was fabulous. I'd go to her in a heartbeat (and send Hallie to her again) if only one could actually specify which dentist one wanted to see when visiting the Penn Pediatric Dental Clinic. But maybe we can try to make an appointment when she is the attending on schedule when we visit for our next check up and cleaning. Anyway, Dr. W. was sweet and sympathetic and was horrified when we told her that the first dentist whom we saw in Philly wanted to papoose board Hallie to get the job done. Dr. W. said that she had not used the thing in 9 years and that she had even had parents request that she use it since then but she refused because she found the papoose board an unconscionable device. So we left Hallie feeling like she was in good hands.

The GI scope was first and Drs. J. and L. came out to the waiting area very quickly to report that they could not visualize any reflux-related damage in Hallie's tummy and esophagus. This was good news. But of course they took the six biopsies to culture to see if there were increased allergic cells (eosinophils). We got the results yesterday and we are happy to report that there is no sign that Hallie has EE. So that's a huge relief. We knew that she has been doing better, vomiting wise, on her diet but that's not necessarily enough evidence to prove the lack of EE; only negative biopsies accomplish this. (By the way, we are now up to 33 days that are spew free for the year. February has been rougher than January for some reason--maybe ear infections?--but Hallie's only had one incident since last Thursday, which is great). Anyway, it's clear that she's fine on her current diet of goat milk, pears, apples, prunes, plums, wheat, and fish (she likes fish sticks and . The wheat products that she has been eating include minute quantities of bread; the breading in fish sticks -- her record consumption at one time is up to 2, but it's more like 1, under some duress; pasta (again, a record of 2 pieces of penne or rigatoni, but half a piece is more typical); vegan tomato pie (crumbs so small that they hardly warrant mentioning); graham crackers (I think she once made it through one); and our great success story, honey frosted puffed wheat (I am pretty sure that she made it through a half serving, or half a cup, of this today). She has also been an eager consumer of between an eighth and a half of an oreo (really a Paul Newman's version of this) cookie. And she's eating small quantities of mango and pineapple and sweet potato in her Stage 2 purees.

None of this is going to win her any eating awards (I am pretty certain her caloric intake is down and that she uses more calories eating this solid food than she takes in---we are talking an hour and a half for a couple of fish sticks and fries). But her variety has really picked up and is now beginning to resemble something akin to a normal diet. And I am less bored by the constant pear/apple/prune/goat cheese rotation that we were on. On the downside, the quantity of Hallie-inspired food in our freezer and fridge is now much greater and we still waste much more than I am comfortable throwing out, particularly in these lean times. But, then again, I am not willing to eat a pre-slimed half oreo cookie, either!

We did have a bit of eating regression earlier this week, to the extent that not only I (of little patience) found myself frustrated in a way that I have not been in a while, but even Barbara, the fabulous feeding therapist, was sweating bullets during our Tuesday session. It did not seem to be related to Hallie's surgery (which I will return to in a bit) since Hallie bounced back from that pretty quickly, so I was beginning to think that it was related to Lea's arrival. And that might to some extent be true, but the real cause appears to be the poking through of Hallie's 2 year molars (at least she's getting these while she's still 2).

Anyway, back to the surgery: onto the ear tubes. No biggie. We love them and they probably are helping with congestion and vomiting.

And finally: the teeth. As everyone who reads this thing knows, Hallie still drinks a bottle (and will probably be doing so for the foreseeable future so that she gets in sufficient calories every day). And to say that she vomited a lot during her first two years would be a vast understatement. Neither of these things are good for one's teeth. And microprematurity further complicates matters (being on TPN often leads to problems with teeth later on in the game). So lots of things were ranged against Hallie. The dentist, as I mentioned above, was really sympathetic and wanted to do everything that she could to save all of Hallie's teeth. They suspected that several would require capping and even more would require filling and sealing. Only a decent set of xrays (which the first evil dentist we were visited was not even going to bother doing) would tell the whole story. So, they put Hallie under and once the other procedures were completed, got to work. Surprisingly, the xrays did not show quite as much decay as they suspected. They cleaned Hallie's teeth and were able to get away with sealing and filling all but one of them. On the downside, however, the one tooth that really did require a cap was too far gone to save. It literally fell away as they were working on it. So now Hallie has a gap in her smile. We knew this tooth was in horrific shape because we watched it disintegrate before our very eyes (this is quite disturbing to see). The permanent tooth should not be affected, though, so as long as we can get her off the bottle (someday? if only you could have a rational talk with your two year old who hates to eat about why they need to drink their milk out of a cup and while awake we might get somewhere. As it is, she doesn't mind drinking out of an open cup and actually is fairly skilled at it---it's just that these cups contain ice tea (unsweetened and decaffeinated) or something else that we are drinking, and not her milk). Anyway, the abatement in vomiting will certainly help and we'll be getting her teeth cleaned every three months, even if it kills us (which it might well do). But at least she is happy to let me brush her teeth daily now.

Whew! It took several sittings to finish that .... I think I need to break this thing up or I'll never post anything again!

Meanwhile, here's a few pictures.

Hallie recovering after her surgery:

Hallie eating an Oreo cookie at the Please Touch Museum:

The last time she had one of these was right after her scope in August 2007. And odd coincidence. And last night (Feb 27), Hallie did actually pretty much finish a whole one of these. Minus the part ground into the carpet, of course.

And here's Hallie 'eating' pizza (sans cheese):

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One to two mouse bites (actually, smaller bites than those which our mice take) are all she can muster right now. But she does like the concept of pizza, at least. And, in a minor triumph, the kid did make it through the better part of a single chicken nugget (gotta watch these--lots of potentially sneaky ingredients in many brands) last night with no apparent adverse effect. Hopefully we'll get chicken back as a protein.

Finally, given the recent FDA warnings about Reglan, we're going to try to wean Hallie off of this to see if it makes a difference. Our hope is that it does not. Her current dose is 1.8 ml four times a day, and so we are going to go down to 1.5 ml three times a day. If her delayed gastric emptying does not get worse, we'll drop it down from there. Meanwhile, we'll be stewing and pureeing even more prunes around here in the hopes of using those to speed up the process. As far as I can tell, there are no concerns about tardive dyskinesia where prunes are concerned!

1 comment:

Anne said...

Love the photos ... then again maybe I am biased?

Do not be concerned about your fear of all things Alice and Oz. I still close my eyes at those damn flying monkeys.