Sunday, May 01, 2005

It's Official... I'm Tired of Going To The Hospital With a Sick Child

The header says it all... these last three days (Thursday afternoon - Saturday afternoon) with Collin in Valley Children's Hospital were days #8-10 of the Jackson family's secret plan to turn a room there into a summer residence.

Collin has been having trouble with his feeding... choking & gagging in odd & scary (read: gasping for breath) kinds of ways. He had an upper GI workup on Wednesday (good news: the taste buds of babies aren't developed enough to realize how nasty barium really is) and they discovered he was aspirating some of the fluid into his windpipe.

The solution: thicken his feeds with rice cereal. This led to a very scary moment early on Thursday morning in which he couldn't catch his breath for 5-10 minutes. (Talk about moments filled to the brim with a lack of fun.), We took him into see his pediatrician (Dr. Fraley, the one who caught the Kawasaki disease in Braeden) and she, in consultation with some experts at Valley, decided to admit Collin to stabilize him and figure out the problem.

Stabilizing including a NG tube, which is hospital code for a feeding tube that runs through your nose, down the back of your throat, and into your stomach. They also put him on a heart monitor, which we learned with Braeden is mainly used to keep parents from sleeping when it goes off for scary reasons like "he's moving his foot around too much." (Can you tell yet how little sleep we had in the hospital?)

The first doctor we saw (a resident) basically scared us to death by giving us ALL of the possible scenarios (the one that stuck out was operating on Collin to put a G tube in - that's a semi-permanent feeding tube directly into your stomach.) I'll give her credit for being a mom of a 14-month old herself and wanting to make sure we weren't blindsided... but it was still a pretty scary conversation.

The attending physician was much more positive (and I'm guessing the above-mentioned resident got a mild chewing out for giving us such detail). He anticipated that we would be in the hospital with Collin until Monday, so they could get the appropriate tests done.

Here we come to one of the big problems in medicine - if it's bad enough to put you in the hospital, shouldn't the whole concept of "weekend" be a moot point? Well, evidently it's not, as we were going to have to wait for a swallow test (essentially an upper GI focusing on the swallow mechanism) until Monday.

That is, until God intervened and there was a cancellation... and we had our swallow test on Friday afternoon. Which showed (soo-prise, soo-prise) that with thinner liquids, Collin was having "silent aspirations". In other words, liquid was going down his windpipe AND he wasn't coughing it back up. When they switched to what they called a "nectar" thickness liquid, the aspirations stopped.

So far, so good. One of the discoveries was that rice cereal is not an effective thickener - it tends to clump, so you have water-y parts and thick parts. Instead, we're now using something called Thick-It, which does the job in an even (and expensive, of course) manner. Using the thickener did not entirely stop the choking/gagging, but it did seem to minimize it.

By Friday night, we were both exhausted and hoping that Collin would sleep more comfortably. Well, Collin & Daddy (that's me) took that into their own hands around 3 am. I was getting ready to change a poopy diaper when I picked Collin up and moved him the length of the crib. His NG tube (still in under doctor's orders - "in case we need it again") caught on the blanket and the tape ripped off his face. I hit the nurse's call button as Collin began sneezing up his feeding tube inch-by-inch. By the time the nurse got there, she decided to pull the tube... and there was only a 1/2 inch left in his nose. (I really liked the night nurse - she confided that she'd wanted to pull the tube earlier!) With the tube, he began to take it easier... as would I, if you took a long yellow tube out of my body!

Saturday morning, we puttered around, wondering what came next. The attending physician came in and asked me if we wanted to go home - the answer, of course, was YES. Then began the Dance Of Discharge, which is only slightly shorter than the 30 Years War.

And since nothing is that easy - a doctor came in to "observe" Collin feed (as Shari requested) and left after a minute, since nothing was going wrong. Not 30 seconds after she left, Collin began gagging. We got into a long & not terribly productive discussion with our nurse, another nurse who was an "expert" on lactation, and the doctor. In short, the conversation proved that

  • some doctors don't listen very well
  • some doctors need etiquette courses (dismissing Shari's request with "we don't have time for that" being the most clear example)
  • some doctors need to be careful about giving advice so freely when they've only glanced at the chart

We still went home - which we wanted, as it didn't seem like further discussion with the weekend staff was going to do anything. After renting a Medala pump and dealing with the pharmacy, we finally arrived home at 3 in the afternoon.

Well, it's 3 pm Sunday afternoon, and Collin is doing much better when we get the consistency of the feeds right. (For the record, what we're attempting to do flows like thick Malt-O-Meal.) Shari's getting some much needed sleep, and I'm back at the church, getting ready for two meetings & a missions study.)

Thanks for all who've been praying for us. Please don't stop now. :-)


Bigger than Me said...

Hello. You don't know me, but I stumbled accross your blog tonight, and really got a kick out of it. I'm a nursing student with three kids of my own, and it was cool to see what I do at the hospital from a different perspective. I hope he is doing well. You seem like a pretty awesome dad, keep up the good work!
Katie Michel

Anonymous said...

As you look back, in what ways has God transformed you by that experience? The only reason why I ask is because I love to hear stories about how God endlessly works in peoples lives.

Mark (aka pastor guy) said...

I'm sure He's at work, anonymous... but it's still pretty close to be trying to put a specific "this is what God is doing/did" cap on it. The exhaustion & frustration drive us to Him, of course - nothing is wasted in the Kingdom of God - but I think there's more to it than that. I just don't know what it is yet.