Monday, August 8, 2011

Back in the Hospital

As you may have guessed from my previous post, we are back in the hospital. Stephen and I were having a great week in York and all seemed to be going great so Bill drove up to PA after work on Friday with Mabel. We had great plans for the weekend which included introducing Stephen to more family and friends, going to a BBQ at my sisters house and then taking Stephen to church on Sunday to show him off some more. But we were thrown a curveball Saturday morning when we woke up. Stephen woke up screaming (which isn't far from the norm), but when we got him calmed down he seemed a bit sick. He was limp, very tired, and lethargic so I figured he had just tired himself out crying so hard and laid him back in bed and jumped in the shower. I checked in on him after I got out of the shower and noticed that his breathing appeared to be "off." He was taking a few breaths, albeit shallow breaths, and then holding his breath or not breathing for a few seconds and then taking a big breath before the pattern continued. This went on for about 10-15 minutes before we decided we needed to get him to a hospital.

The big question now was do we take him to the local hospital, Hershey Medical Center or drive the two hours back to Virginia. We decided to drive the whole way back thinking that he wasn't in any immediate danger since he was breathing and going someplace other than Fairfax might be a nightmare trying to explain his whole health history and what not. If it had been a real emergency, we would have called 911 or driven to Hershey. Plus we figured if we got in the car and something happened we would either find the nearest hospital or call 911 from the car.

Thankfully we made the right decision and got Stephen to the hospital within 2 hours. He slept for a bit in the car with my hand on his chest making sure he was breathing, woke up and was alert for about 20 minutes, and then spent the rest of the trip crying and whining. They admitted him to try to figure out what's going on (after sitting in the ER for hours) and of course we're still in the hospital. We've seen GI for a consult to figure out why he's throwing up after every single feed and had another EEG and neurology consult. The whole crew of residents just came in with the doctors and they still don't really know what's to blame. There was some thought it was a side effect from one of his medications, but now that's been taken off the table. The pediatrician thinks it might be caused by the fact nephrology has been overfeeding him. Meaning his formula is concentrated too much and he's getting too many calories; not that he's getting to much volume. But we haven't gotten any confirmation from anyone. Just that the specialists, GI and nephrology need to get together and figure it out. To me, it doesn't seem to explain why his breathing would be affected just on Saturday and Sunday and not today or before Saturday.

But I do know that he's feeling 100% better today. He woke up not screaming or crying and has been playing in his bed for the past hour and half. And today's the first time I've seen a smile since Thursday (he started feeling sick on Friday) and I even got some raspberries thrown my way. So hopefully this means he's on the mend and he's now getting the right combination of medications. I'm hoping that maybe they'll discharge us today and tweak his feedings and meds at home. Now it's just a waiting game to see what the doctors want to do.

Here are a few pics I snapped this morning when Mr. Grumpy was being Mr. Happy :)

Here was Mr. Grumpy yesterday during his EEG. The poor little guy was not feeling well as you can see:

Thankfully I think that sad face is now behind us!


  1. Those thighs are just sweet chubby goodness! Hope he is feeling better... is there anything at your parents' house that he might have been allergic to??

  2. Hi Lindsey,
    Stephen looks so much better today!! Your "Mother's intuition" was right on again!!! Thank goodness you headed for Fairfax. Glad things are looking better--hope they get his meds adjusted soon! I still believe Superman has a serious crush on one of his nurses:)
    Love and prayers heading your way....
    Aunt LuAnn