Saturday, October 29, 2011

Wires, wires, and more wires

Goodness gracious, I'm very very sorry it's been so long since I last wrote; you all must have sore bottoms from all the pins and needles you've been sitting on! My only excuse is that life with Timmy is always busy as this blog has so well documented (up until a month ago).

To continue the Johns Hopkins story from August...

We are used to having Timmy hooked up to stuff. In fact, the very first time Timmy had a few minutes when he was not hooked up to at least one wire or cord was in March (and that was only for a few brief moments during a bath). These days Timmy is hooked up to his feeding pump 24 hours a day, and a pulse ox when he is sleeping, and his mist collar at night. We are convinced that a wire elf lives in Timmy's closet and sneaks out to tangle up all the cords when we are not looking. We are very used to wires.

But our stay at Johns Hopkins took the wires to a whole new level. It did not set a record--our record for the greatest number of wires/leads/tubes leaving Timmy's body is 19 (I think), but that was last November when his intestines were perforated and he nearly died. This time around Timmy was happy and healthy and just wanted to play. And what better to play with than extra wires? It makes us laugh at the "safe-sleep" people who say that a baby can't get within 5 feet of a wire/rope/etc or they will die.

Anyhow, like this moose told you last time, they decided to do an impedance test to see how much Timmy was refluxing and if his pH levels were well controlled. The other thing they were hoping to find out was whether or not reflux episodes were causing his crazy heart rates. We got up to the floor, gave Timmy's medical history sixteen thousand times to a bunch of different people, and we got Timmy settled in.

We brought Timmy in already attached to a feeding pump and to the little box that records the results of the impedance probe. We then hooked him up immediately to a pulse ox (wire on his foot) and to another set of leads (three on his chest/belly) to monitor his heart rate and breathing. Then Timmy was ready to play! We thought that sounded like a lot of fun, until we looked around. Timmy had his crib, and then his mommy and daddy and I had a teeny little bit of space, wide enough for one of those purple armchairs that all hospitals seem to have. (Oh boy, did we miss our room in the NICU!) Then we started to calculate the lengths of all the wires Timmy was attached to, and we realized that it probably did not matter that we did not have much room, since the wires just barely stretched long enough to reach the chair next to the crib. But what do you do with a little boy who is very active and who has suddenly had his arms immobilized? Timmy's favorite games are rolling around, shaking things to make noise, and roughhousing with his daddy. None of those were good options.

This is the best we could do (and here Timmy's wires are stretched as far as they could possibly go).

When we packed, we only had room for one book. (We read "The Belly Button Book" over and over and over and over and over again.) But the real lifesaver was Timmy's iPad! He could still bang on it with his arms immobilized, and with the speech apps, the painting apps, and the e-books, Timmy was able to stay entertained. The iPad also allowed us to bring his lullaby CD along, which made the hospital seem just a little bit more like home.

I know that Timmy's iPad was given to us for the speech apps, and we absolutely love them and use them all the time, but we have also found it useful for so many other things! We are even working on getting Timmy's medical records organized on it so that we can stop hauling the quickly growing expandable file with us everywhere we go.

Finally, nighttime came, and Timmy went to sleep. We discovered that it was up to Timmy's Mommy and Daddy to push all the buttons on Timmy's box all night long (whenever his heart rate dropped significantly). This would have been fine under normal circumstances, but they had already been up for most of the night, three nights in a row. I would have helped but my hooves were too big for the buttons. And I guess all the night nurses had the same problem. Anyway, we crossed our fingers, hoping that his heart rate would be as crazy as it had been, so that we would have it documented.

Well it turned out that his heart rate didn't go as low as many times as the previous nights but there was still a good amount of occurrences. One of them he stayed in the 60s for quite awhile while the doctors happened to be observing him--Go Timmy! It was nice to have proof that Timmy's Mommy and Daddy weren't lying or going crazy :) At that point the doctors decided to hook him up to an EKG which meant that for a few minutes a nurse had to push a button to record his heart patterns at the exact time that they were low. It didn't work so well since it's hard to anticipate when it will happen (I tried using ESP but it didn't work so well).

In the morning, Timmy and I played jump rope with all his wires (double dutch...the works!).

While we were playing, he doctors decided they were concerned enough that they wanted to keep Timmy for the second night to continue the impedance probe and also put him on a Holter monitor which is a continuous EKG. The Holter worked much much better than the ESP EKG's.

The next day (Saturday) we were able to disconnect Timmy from the non-surgically implanted wires and go home!

Since Timmy had thrown all the toys Mom and Dad brought on the hospital floor (including me...I'M UNCLEAN, I'M UNCLEAN!!!), the only thing he could play with on the way home was a 60 ml syringe while I mournfully looked on.

In conclusion, the doctors never actually found out for sure what was causing Timmy's crazy low and erratic heart rates but his parents had a pretty good idea. Saturday night Timmy's heart rate was back to his normal 100 to 130 through the night and so Timmy's GI doctor agreed with his brilliant parents that they were right all along and it must have been an extremely rare reaction to the Zantac. No more Zantac for Timmy. Not even on his birthday or Christmas. Not even with purple sprinkles on top.