Tuesday, April 26, 2011

Our trip to Salt Lake City... Part One

This isn't about the first time we went, THAT was for a family vacation. If I would have known about what was to come, we would have saved some time and money.
It all started three months ago when, after Kevlie got RSV, she was also diagnosed with Croup. She got over both, but her breathing never went back to normal. I figured it was just some residual symptoms of Croup. After about two weeks of nothing changing, we took her in to see the Pediatricians at Seasons Medical. Dr. Gate was the one to see her that day and after asking a few questions he told us it was Tracheomalacia. At the time of the diagnoses, I didn't feel like it was right, I didn't want it to be right. I wanted something that I could help with, that could be fixed and I was almost angry at him for telling us it was that and not something else.And, on top of that, we ask him for a written diagnosis, which he says he will give, then promptly leaves the office without doing.
Playing with her toes

Fast forward two months and many sleepless nights, we have a baby who has NOT started growing out of her diagnoses and who, out of 24 hours in a day, needs help breathing at least 20 of them. Whether that was from me helping or her, putting herself in a cockeyed position so she could breath. One night, she gets a low grade fever and starts acting lethargic, now, having done my research, I know that aspiration is something that can happen easily in babies with Tracheomalacia. Fearing that's what it was, we ended up taking her to the ER. They do all sorts of tests and poking, they take an x-ray for pneumonia and then another to check her airway. They poke her five times (four in her head) trying to get an IV in. And while all of this is happening, the SAME doctor comes in to talk to us and we refresh his memory that HE diagnosed her with Tracheomalacia, at that point he tells us that he doesn't really know if that's whats going on with her... Seriously!? Oh, my hand was itching to smack this man upside his MD head. Why in the world did he not, TWO months before, say 'hey, I think it's this, but because it's her airway, and that's a pretty important part of a body to not be working right, I'll order her a scope by one of the ENTs, just to be sure.'? But, no, he doesn't. He gives us a diagnosis for what he THINKS it is, without double checking, and books it out of his office for the weekend.

The siblings watching TV in her hospital room

At this point in time, I'm so beyond pissed and the mama bear in me is demanding this mans balls served on a plate with a side of rice. Ryan is feeling the same way, but he's showing it more then I was. I, was at least still civil to the douche bag.

A nervous mama and an oblivious baby, right before LifeFlight arrived

We're admitted that night and the option of an ENT coming to see her the next day and from there, possibly going to Primary's Children sometime that next week is presented. We figured we'd have a while to figure out what our options are and what we'll do. The ENT came Thursday evening to take a look at her and he saw that her throat from her vocal cords up, was perfectly fine. He did say however, that she had clusters of veins all the way down her throat and on her vocal cords. He said that he thinks she may have a hemangioma in her throat. They aren't able to get past her voice box with their camera without sedating her and they aren't able to do that at that hospital. So, we're referred to Primary Childrens. We honestly thought we would be taking her down sometime the next week, so we stay another night with the thought of going home and chilling for a day or two, then heading down on our own to have her examined. But oh, no, that wouldn't do. Friday morning, right after we woke up, like, we still had eye boogers, Dr. Lame comes in and tells us LifeFlight will be here in an hour. We were like, 'Wha?!'. So we got ready as fast as we could, they got there, loaded her up (I went with her while Ryan drove down) and we flew to Utah and drove to the hospital.

Noming on her cereal box, waiting for ENT

I waited a few hours for Ryan to get there, all the while, just holding Kevlie so she would sleep. They didn't want her to eat, to make it safer for her while she was intabated. That was hard, having a baby that was hungry and not being able to feed her. Poor thing.

I just think this is a cute picture, so you must look at it.

Ryan finally showed up and a couple of hours later the OR came to take her for a Broncoscopy. Letting them take her was one of the hardest things to do. I hated the fact that I couldn't see what they were doing. Or how she was reacting to it. Even worse, was that we couldn't hold her once she was out of the OR and back in the PICU. We left her at the hospital that night (now, before you start thinking we were abandoning her, the nurse to patient ratio in the PICU is wither 1:1 or 1:2, they NEVER give a nurse more the two patients at a time, plus she was sedated) and got a night, not really full of sleep, but more of worry.