Moving on up...

Thursday, March 31, 2011
The Last Day Of March

I don't have much to say about today.... but isn't that how these blogs always start?

I went up to see Cayleigh this morning while Nic rested his ankle which has been giving him alot of pain. She was doing pretty good, in my opinion, and the nurse told me some good news. She mentioned to me that they would be removing her PIC Line (the line that runs almost to her heart) tonight and that she was going to be having her last antibiotic round today too. I was pretty excited about that to be honest. Cayleigh had a dirty diaper when I got there so I began the long process of changing her diaper, cleaning and changing her G-tube dressing and adjusting her harness. By the time I was almost done, and mind you I was giving her a massage and checking all the indents on her skin, the Physical Therapist came up to see me. She went over alot of different moves to do with her - but primarily some hamstring stretches to do with her.

She said to me that because Cayleigh is in the harness, her hamstrings become pretty stiff and tight. It's a good idea to stretch the muscles and help her to stay loose. She also sohowed me a move that involves putting your fingers right about her butt cheeks, and gently rounding her hips & legs up (sort of putting her into a C shape) really gently. This prevents her from having a flat spine. When the harness comes off, their back lays flat against the bed. It doesn't allow for curving to the lower spine which everyone has slightly. So this little rolling up, and then slight moving of her hips to the left and right will help her maintain flexibility.

I asked the nurse on hand if she thought it looked like there was some breastmilk in the secretions Cayleigh was having and she said she thought that, at times, there was. She said she'd made note of it in her files. I explained to her that, over the course of the week, it seemed that Cayleigh has been having more desats. She refers to some chart that shows the last 48 hours and says it looks like she's been doing the same. I tell her no, I've been with her since she's been born and I am not talking about the last 48 hours I'm talking about the last week and I want to know why. I ask her to ask the doctors about reevaluating her meds. She's gained over a pound in the last week - she may need more anti-secretion med or more reflux med - or a different reflux med. They need to figure it out and be aware. She tells me she will let the doctors know my concerns.

So by the time all of this was said and done, it's been almost 3 hours (1 pm) and I needed to head back to the house to get some lunch, pump and then Nic and I would head back up. I did and then Nic and I returned to the hospital. The first thing Nic asks is about whether the doctors are going to adjust Cayleighs medicines. She tells us that they want to wait and watch what she does. Over the last 48 hours they've upped her food and since her stomach is really small, it will take some time to adjust to it. She tells us that she is tolerating her feeds well but she still needs time to adjust to the amount and whatnot. The reflux could subside, blah blah blah. Nic gets a little pissy and asks how many desats she needs to start having before they adjust her meds. Part of this, I think, is that he is in pain. I know I have been very short tempered shortly after having surgery, I still have pain now and get a bit short when it hits me. He sits down and I start changing her diaper.

I ask a question about changing her G-tube dressing and the nurse tells me I don't need to. I'm confused, I say. The dressing she has on there is obviously the same one I put on there earlier. She says it is. I tell her there is some green stuff on the white, top layer. I thought I was supposed to change it every time I change her diaper. She tells me I don't need to. She says this isn't green - its yellow. And that some discharge is normal. I tell her I can't tell the difference. I feel myself getting frustrated and see a doctor. She asks me if I'd like to talk to him and I say yes.

I start the conversation by telling him that I've already asked the nurse these questions, but he's the doctor and I want to hear it from him. I talk to him about the secretion meds - he says that they adjust the amounts twice a week and they are going to be adjusting those. Good. I ask about the amount of food she is having and ask if she is tolerating it - he says yes. She's at 20 ml, and she seems to be doing good. I ask him about the G-tube. He comes over and says that I don't need to change it every time I change her diaper. Only when it looks saturated or dirty. I tell him the top layer, the white stuff, had the green stuff. I proceed to pull it out of the garbage. I see the nurse give me a look and I'm pretty sure I shoot one back. I ask if he thinks that is green discharge. he says it isn't. It's a normal yellow stuff.. not the same thick mucus like stuff she had when it was infected. He tells me the ace bandage like stuff that sticks to her skin pushes and moisture up and then absorbs it. Because I'd put this gauze layer on top of that layer to help stabalize the G-tube, it absorbed the 'yellow' *cough green cough* discharge. But because the ace bandage stuff wasn't wet or dirty , we didn't need to change it. He said before, they were changing (the nurses) it at every diaper change because it had been saturated. He says now we can leave it on until it looks nasty or wet. I ask how long? I feel myself getting upset. I need rules. He says "You will just change it once every 24 hours unless you see the pad wet". I am immediately relieved. I feel myself not so upset anymore and say thanks. Truly, that was all I needed. With as many questions and unknowns and I (we) have to deal with - I need some stinking rules or guidelines when it comes to some things. My daughters dressing is one of them.

Anyhow, he left and Nic ended up leaving because he needed to rest his ankle. I sat down to hold Cayleigh and proceeded to soak up the cuteness. Then a lady comes over who I recognize but she is in street clothes so I wasn't sure. It was the genetic doctor. She sits down and tells me she's glad she caught me. She was leaving and wanted to swing by to see if we were here. She then tells me the doctor told her my findings with the Worster-Drought Syndrome. She is really excited. How did I find it? she asks. I tell her 'google'. She looks stunned. I tell her that I've been researching all kinds of things and that I just finally came across this syndrome that seemed to match her symptoms. I tell her I found it on a UK hospital website. She asks me more about it and I explain what I've learned. She says that it may be related to the 15 cases-to-date 21.1.Q duplication (or whatever it was) genetic thing they had found. Basically, she was saying that, while they put these symptoms together and called it a syndrome (which means not genetic), they may have found the missing genetic problem that could be the missing link. They, then, could get the credit. She tells me she is going to be presenting this tomorrow before the huge board of geneticists that will be meeting. She will be contacting these UK doctors to see if they've done genetic testings (the really in depth ones that THEY have done on Cayleigh) and if they hadn't - UCSF would be requesting that they do to see if there is a missing link that ties the cases. She asks me if she can take a picture. Genetics people use pictures to link the features, etc of the people affected. She then takes a picture of ME, and then two of Cayleigh. I'm not sure why she took it of me - but, whatever. If it helps, it helps.

So, after she left I turned back to Cayleigh. She was awake now. After the flash of the camera she was up. And she STAYED up. She was looking off the left, as she often does, but then started to focus on me. I was really excited. For the next hour she stayed up with me while I talked, prayed and sung to her. She was even focusing on me for the majority of the time. It was AWESOME!

We'll have more news tomorrow and over the next coming days. Please pray that Cayleigh make good progress in that she tolerates her feeds, that she have no infections or illnesses -viral or otherwise, that she have more alterness, more focusing, increased movements and flexibility and NO MORE DESATS! :)

Thank you all!!
and ENJOY

(PS. I snuck a huge flower headband up this morning, while Nic was here, and I took alot of pictures with her in it. :) )