Let me tell you about my day...

So I want to tell everyone about the past couple days. Not to whine, not to complain, but just to tell. It's completely medical, and probably amazingly boring to read, but maybe someone wants to know.

On Monday I had three appointments set up for Jaela. Yes, three. I had a physical therapist coming at 12:30, a nurse at 1:00, and some people to talk about her hearing at 2:00. But I started the day by trying to order new bags for Jaela's feeding pump. I called the person that usually helps us, but she said she couldn't so she transferred me. No one answered. So I called customer service and they couldn't help me, so they gave me another number to call. Finally I got the bags ordered. Then I had to untangle a mess with Shriner's. Someone from there called the other day and said I had to set up an appointment with the University of Utah to see a geneticist, but they couldn't tell me why. I called the U and they said that I needed a referral to be seen. So I was calling back and forth for days. Finally on Monday after I'd talked to about ten people I finally got someone who kind of knew what was going on. She' said she'd fax the referral and have someone call me back, and when I asked her why we were supposed to be seen she didn't know either and couldn't see anything in any doctors notes so she'd just call me back. Then the physical therapist calls and says he'll be a little bit late. He comes and talks for a while and while he's here I get a phone call. It's the hearing people and they're here early, sitting in the driveway and want to come in. Well right after I hang up, the nurse knocks on the door, and she hardly has a chance to sit down before the three women from the hearing place knock on the door. So I'm trying to find a place for everyone to be and we finally get settled.... and then the phone rings. It's the pediatrician. He wants to check Jaela into the hospital that day and stay overnight to try and get her off oxygen. I told him I couldn't come in because I had an appointment with the audiologist in the morning, but I could come in after that. Finally by 3:30 everyone had left and my day calmed down. Til morning. I had to be up early to get Jaela to the audiologist at USU. Totally worth getting up early though! We got some FANTASTIC news.... Jaela has no hearing loss!!!! Her hearing is just fine!!! It was most likely fluid that made her fail her past tests. Anyway, as soon as I finished there, I headed straight to the Logan Regional Hospital to check her in. On my way into the hospital, the lady from Shriners calls back. She explained that it was just that the geneticist we saw at the OI clinic needed to be paid, not that we had to see another one. Once I got Jaela checked in it was mostly like any other time in the hospital. Medical histories, being watched like a hawk, etc.

Let me write a "quick" aside about her oxygen. We've taken her monitor off because it's been burning her and giving us bad readings. Her levels are supposed to be between 85 and 100. She did drop down in the 40's the first few days in the NICU. And when she did, she didn't look good. She was purple and blue and grey. But this monitor is telling us that her oxygen is in the 30's, yet she's pink and rosy and happy. It'll also wants us to think her heart rate is 12.

This is a picture of her burn.


The nurses hooked Jaela up to one of their monitors for a couple hours but couldn't get a good reading on her feet so they put the sensor on her hand. They were getting different readings, but still not great. So they put another sensor on her foot to compare readings. They sort of matched and we decided to put our sensor on her too to see if it gave the right readings. It didn't.

In this picture you can kind of see the sensor on her right hand and both feet. She had so many cords and wires. They put the leads back on her chest like in the NICU. So in total, she has eight cords, tubes, and wires attached to her body. (Sorry for the bad pictures. We had to take them on the iPod).


They finally decided she couldn't get off oxygen yet and sent us home early. Thus ends my two day saga.