Tuesday, June 16, 2009

And So We Return to the Hospital

We weren't out of the hospital very long. That's just how things go sometimes, I guess. We ran into Little Guy's Deaf ed. teacher at Target on Tuesday after he'd been out of the hospital. She noticed that he was a little bit blue just above his lips, but figured I knew about it. So, she didn't say anything. Then, Wednesday night, my friend T. was feeding him and we noticed some rapid breathing. I took note of it, and tucked it away in the back of my mind. Thursday, he had Deaf Ed. When he got there, he was really working to breathe. He was retracting and blue in the face. Ms. Kristi (his Deafed. teacher) basically told us she couldn't let us take him home and met us at the ER.
His sats were at 88% and dropping. We put him on oxygen, and it was determined that he'd need to go back to Children's hospital. That was Thursday. Today is Tuesday. We're still here. My friend, T's, vacation. Nice, hun?
Basically, it appears that he has a baseline O2 level of 92-94%. He randomly desats and goes down to the mid 80's and turns slightly blue. You might be able to see it just above his upper lip in the close-up picture I've posted. (Thanks, T, for bringing your camera!) he hasn't stopped retracting since we've been here. Not once. Ever.
This has been a whirlwind of emotions for us. Doctors can't figure out the problem, even after tons of tests. We've had cardiologists, pulminologists, SLP's, ENT's, and probably a couple of veterinarians here. Seriously. That many people have looked at him. We've had a brocoscope, MRI, EKG, blood tests, and anything else you can think of. No echo, but it doesn't sound like they're going to do one. Tomorrow will be an MRI.
Some dr's have suggested we just take him home with a good understanding of how to do CPR, and then plan to take him to the ER when it happens again. Yeah. Because it seems like a good plan to hope he'll wake me up to tell me to initiate CPR so we can be put on an ambulance and sent right back here again. Right? I think not. Seriously? What kind of person suggests taking home a baby that we know for sure is going to desat his O2 levels for no good reason and just hope to be right with him and awake when it happens??!?!?! Are you freaking kidding me?!?!!?
We finally got a good pulminologist to come look at him. He has assured me that Little Guy isn't going anywhere until we have answers or at least a solid plan for how we're going to treat him. Since this is a teaching hospital, most of the alleged doctors seem to be about twelve years old. Our pulminologist is definately older than that and has much more experience. (Not to mention great hair and teeth). He has a working relationship with Snort's pulminologist and he's not afraid to ask questions and stick up for us. Thank goodness!
The food here is terrible, the nurses sometimes forget to answer the alarms when they go off, the floor I'm sleeping on is a little bit hard, I haven't seen my other children in nearly a week, and it's safe to say I'm just tired. In the end, though, I think it will all be worth it. At least I hope so.
I'll continue updating as new events unfold. Tomorrow we go for the MRI. PLEASE pray that we find a test somewhere that tells us what is going on with him and why. And, even better, what we can do to help poor Little Guy out.


  1. Hey, I've been TRYING to get you to sleep on the couch. LOL. And at least you haven't vomited yet from the food.

    Seriously though - I hope they find something tomorrow.

    Oh, and I have not minded one bit being here to help. Luv ya.

    PS: word verification is hottedom... as in, the pulmonologist must have grown up in Hottedom. LOL

  2. Wow- talk about a crazy roller coaster! I am praying that the MRI will give some insight, or that SOME test will tell you why he is having trouble getting enough O2. Goodness gracious- you guys deserve a break already!

  3. I am so sorry all of this is going on. I will be in the Dallas area on Sat Afternoon. Let me know if you need anything. I am willing to pick up something if you need it...


  4. Oh Aimee, I'm so sorry to hear about this. Hope they come to some good conclusions soon. How blessed you are to have had that in tune deaf educator. Sometimes when our own children are sick, it can be so hard to tell those littel signs. Hang in there and hope you get some rest. Thinking about you.

  5. I agree with you completely! I can't believe anyone in their right mind (much less a doctor) would dare to suggest sending him home if you know CPR!
    I hope and pray that you find something out soon. I know how hard it is to wait for answers and wonder what tomorrow holds for your precious one! Praying for wisdom for the doctors.

    "Behold, God is mine helper: the LORD is with them that uphold my soul." Psalm 54:4