Saturday, October 20, 2012

Holding Pattern

Yesterday was a relatively quiet day. Peyton did not have a good night's sleep at all on Thursday night. She woke up a little cranky, but if I'm being honest, I truly felt like she was a little better and that perhaps we were heading in the right direction.  

Peyton, having not had the best night's sleep, fell asleep around 1:30pm. I thought that was fine - she probably needed a nap after the night's sleep she had. She basically fell asleep by the time the respiratory therapist was finished with her. When the RT came back 3 or so hours later, Peyton was still asleep. Her treatments involve lifting her up, putting a vest on her, hooking her up to a machine that inflates the vest and it vibrates at a pretty good force in order to help loosen up any junk in her lungs. She also gets a number of nebulizer treatments as well as inhalers. She slept right through that, perhaps only opening her eyes briefly once or twice. The next RT came in around 9:00pm or so. Same scenario. She'd pretty much been asleep since 1:30pm. But I figured she'd wake up completely at this point because she was still on the nasal canula for oxygen and she needed to be put on her bipap mask. Her canula is taped to her cheeks. That would definitely wake her up! Well, it did...briefly. And by the time I had the mask on her and started up the machine, she was pretty well out of it again. 

Sometime after midnight, while she was on bipap, her oxygen levels dropped and kept dropping to about 80-81%. I watched for a moment and the nurse came in since she had seen that on the monitors. I hooked up supplemental oxygen to her bipap machine. We shouldn't normally have to do this because the bipap keeps her levels where they should be...most of the time. I got the oxygen going at 1 liter and the same exact thing happened again. I bumped it up to 2 liters of oxygen. She did well on that amount. In the meantime, her heart rate was up in the 140s and even up to around 150. Even when she was sound asleep, it was in the mid 120s. Mid 120s is usually her normal "awake" rate when she's well. Because of all of this, the nurse called the RT to come in and take a look and she paged the doctor. All of this was going on between 1 and 2 am this morning. I think the doctor was in sometime shortly after 2. Of course, she was sleeping soundly and seemingly peacefully. There wasn't an explanation. 

Speaking of no explanations.... We still have no idea what is going on with Peyton. This is our 12th day in the hospital and there's no answers. Let me reiterate that this is not the fault of the doctors or hospital. They are doing everything they can. Trust me on that! I find no fault in anything they've done. Earlier in the week, I decided to email Peyton's geneticist in Boston to let him know what was going on. Not because I'm doubting anyone's abilities here but because I know that we're all sitting here scratching our heads. I thought maybe, just maybe he might have some ideas. As it happens, he is at a conference on metabolic diseases. He thought it interesting given everything going on with Peyton right now. We exchanged a couple emails and he then sent me one which I passed on to Peyton's team here. It had instructions to call him while he's at this conference. The doctors rounded this morning and they have apparently been in touch with him during the night via email and phone. He has some specific tests that he would like run. Per his request, they checked her ammonia levels in her blood. It came back as 80, which is a bit high. He was looking for something over 100 I guess. That said, they were going to get in touch with him about that since it was close. They may do a 24 hour urine test (she'd have to be catheterized for that). I think he wants her to begin IV copper supplementation, but getting that is not as simple as getting iron supplements, so they have to talk to pharmacy here. There's also some sort of steroid that he was talking about putting her on. Since there are a variety of tests he also wants her to have, the doctors here want to find out if those all need to be done before starting this steroid. Starting the steroid isn't the may just need to wait until after these tests. The bigger issue is the copper. We'll see what happens. 

Right now we're just in a holding pattern. Peyton's definitely more alert but her heart rate is higher than normal and she's not back to her base line. She is a mystery and she is leaving everyone scratching their heads. Keep on praying for wisdom and guidance for her doctors. This is as frustrating for them as it is for us. I wrote a post on my blog in the wee hours of the morning this morning. It's a little about Peyton and about community. You can read that here:

And also just a little side note, I wanted to share that I had written a blog post last month as a "Compassion Blogger" - that is, I will from time to time write blog posts to promote the efforts of Compassion International in sponsoring children around the world, lifting them out of poverty in Jesus' name. September was "Blog Month", which means they utilized Compassion bloggers to the extreme to push to get 3,108 children sponsored in the month of September. They got 3,159 sponsored!! I wrote posts during the month towards this effort. One of my posts was selected as a "Best of Blog Month" post and was featured on their blog. You can read that here:

So, we're just hanging tight here and we'll wait to hear what all the doctors come up with. I'll keep you posted.

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