Update on Faith's illness

Saturday, March 27

So, finally I'm posting about our experiences a couple of weeks ago. Faith was sick, throwing up green, as I last posted. We spent the night in an observation room at Children's ER, and they sent us home, calling it a "gut bug".

I left bright and early Thursday morning (March 3) to fly to Wisconsin for the weekend to help my grandma after back surgery. Dave's sister and soon to be brother-in-law kept Faith for the weekend, because it just so happened to also be Dave's first drill weekend. We had assured Steph and Terry that Faith is the easiest baby in the world, she almost never cries, she eats like a normal baby, and is only hooked up to her feeding tube at night... at least, that WAS true before she got sick.

Anyway, everyone made it through the weekend ok. I got back to Colorado on Sunday night. Faith still wasn't doing well, and so on Monday afternoon, Dave and I took her back to Children's ER. She hadn't been awake for more than 2 minutes at a time all day, hadn't pee'd, and was just really limp and lethargic, totally not herself AT ALL.

The hospital was so insanely busy, it was horrible. We waited over an hour in the ER waiting room, then got taken back to a room. (I mentioned on the way back to the room that if we'd been in Boston, we could have called Faith's doctor and probably completely bypassed the ER altogether... and the guy walking us back said, "Yeah, we'd never do that here"... yet another reason to LOVE Boston!)

The ER doc came in, he agreed that Faith was severely dehydrated (we found out when they triaged her that she had lost an entire pound over the course of the week!) and that she should most likely be admitted. He said that they would start an IV and give her some fluids, do a couple of x-rays just to be sure there wasn't anything else going on (still green throw-up), and get us admitted.

We waited... and waited... and waited... OVER 1 1/2 HOURS LATER a nurse FINALLY came in to start the IV. Until then, not a single nurse even popped her head into the room. The nurse who did come in to do the IV was making me so mad, I had to leave the room. I was mad to the point that there were tears welling up in my eyes, and I honestly thought I would punch her, or at least say something really horrible, if I didn't leave the room. She kept going on and on about Faith being tired, saying stupid things like, "Hey sleepyhead, don't fall asleep!" Faith wasn't sleepy. She was severely dehydrated and completely INCAPABLE of staying awake.

Anyway, she got the IV started, but couldn't get it to draw blood, so she decided it wasn't important to get blood to run labs, so she didn't.

Then our actual nurse came in, and sort of apologized for the situation, by telling us that there were too many other really sick kids who needed her more. BAD idea at that point to say anything like that to me. I set her straight- I told her to NEVER tell a parent of a medically complex child who is all but UNCONSCIOUS from dehydration that their child isn't SICK ENOUGH to have the nurse come in to the room and start an IV when the doctor says it's necessary.

They got the IV going, and then we waited some more. I was getting more and more frustrated and upset, and finally asked them to send a doctor in. The same one who had agreed that Faith should be admitted (like 3 hours earlier) came in, and I told him everything that had happened, and I told him how upset and angry I was, I told him that the ONLY doctors at Denver Children's that we even *sort of* trust are the surgeons, that I'd been assured that we'd see a surgeon we knew when we came in, and that by the time they actually got us back to the room our surgeon was gone for the day, and then I told him that if they didn't hurry up and get Faith admitted to the surgery floor, we would consent ONLY to them giving her a bag or two of fluids, and then we'd be leaving and getting on the first plane to Boston.

After that, they admitted her pretty quickly. It was her first hospital admission since getting discharged from Boston on April 4th, 2009. We got her settled in a room on the 6th floor. She was inpatient from Monday until Thursday, and during that time they figured out that she had RSV and a urinary tract infection. She was on oxygen for a couple of days while she was in the hospital, but was able to wean off of it before coming home.
This admission was an important learning experience for us. I had assumed that "short bowel syndrome" and "immune-compromised" didn't apply to her anymore, because she had been doing so well and was on her way to being completely "normal". I have felt bad, because so many of our friends' kids are physically, structurally short gut, and I felt like Faith's short gut was "healed"... But, one of the days when the surgeons came around on rounds at some crazy early hour in the morning, they made it very clear to us that it is very likely that Faith will have her bowels shut down pretty much anytime she gets sick. At that point I came to the realization that Faith will always be short gut, even when she is doing extremely well and seems "normal".
She is doing better now. She is back to eating real food, drinks water from her Sigg bottle, is SO close to drinking from a straw (she gets it halfway up!), and gets from sitting to crawling position and rocks on her knees in crawling position... the closer she gets to actually crawling, the more I question why we have cared this whole time that she doesn't crawl... We have some definite baby-proofing to do, and we're probably running out of time to do it!
Sorry it took so long to update about all of this!
Please check out Faith's page for the March of Dimes' March for Babies coming up in April! www.marchforbabies.org/faithsplace If you are near us, we would love for you to join our team and walk with us! If you can't, please consider donating!