I've seen better days

The Great Unknown
Sunday, July 31, 2011

Last night, starting around 6:00 pm, NIc and I noticed that Cayleigh was having a great deal of secretions - even moreso than normal. We ended up putting her to bed with a chair pulled up next to her crib, and I sat in the chair until 2:30 in the morning with my hand on her chest so that I could be close when she had a bunch of snot coming out of her nose, wrenched or otherwise coughed and tried to get whatever it was stuck in her throat, out of her throat. Her heartrate was around 170s when I finally layed down to sleep next to Nic. (within arms reach of the crib, well, Nic's arms reach)

At 6 am this morning Nic woke me up. He explained that Cayleighs heartrate had been up in the 200s for the last 10 minutes and he'd given her Tylenol to bring it down. I noticed she was having a very difficult time, taking as deep of breaths as she could, but rapidly, and still having no sucess. Her heartrate stayed up even after we took her out of her crib, comforted her as best possible and the Tylenol should have been working. So, Nic said we should take her to the hospital. We were going to drive directly to Children's Oakland hospital, but I had a feeling in my heart that if she continued having a heartrate in the 200s that she could go into cardiac arrest. I dialed 911. Within a matter of minutes Mountain House firefighters were at the door. Her heartrate touched 220 right before they came. When they got to the room, her heartrate was in the 190s, oxygen was only 80%. They put a mask on her with 10 liters of Oxygen (typically on 1/2 liter)and her heartrate came down to 180/170s and oxygen was around 93%.

The medics arrived shorty thereafter and explained to us they couldn't take her to Childrens hospital right away because she wasn't stable enough to endure the transport ride (an hour long in good traffic). They were going to airlift her from our house, but the weather was too foggy to do so. I left the house, barefoot and in pajama shorts, holding my daughter and went in the ambulance with Cayleigh.

We arrived at the hospital and they were doing a round of questions with me. My wonderful Nic showed up minutes later (I think he flew) with my pump, shoes, her meds, diaper bag, snacks for us and a heavy heart as we stood around, waiting for the next step.

They did an Xray to check for pneumonia, which came back minutes later as a "Rotated Xray" which meant it wasnt straight on, but the Dr said he didnt think there was any pneumonia. After that, the blood work, full work up, came back as normal. They'd said something in the work was just a bit high, but there wasn't seeming to be any signs of infection.

Cayleigh was still on the O2 at 3 liters as the respiratory tech (RT) came in to give her a breathing treatment. She also did a BloodGas which is drawing blood to check the various levels of gases in her blood.

The results came back with her CO2 (Carbon Dioxide) at 80 ... which is WAY too high. They explained to us that it meant she wasn't breathing out the CO2 she needed to be which was turning acidic in her body. I asked what caused it... they didn't know. Said either it was a gradual progression or it was acute (meaning a sudden onset). If it was accute, they said, it was something very bad. We still dont know anything yet. They said it could be caused by various things but that they wouldnt know anything until more tests were run (at CHO)

Then they told us they'd need to do CPAP. Well, they weren't satisfied that would work effectively, and with the recommendation of the doctors here at CHO, the airlift (Helicopter guys) guys had to put an IV in to get the medicine into her system that she needed before Intubating her (sticking a breathing tube down her throat) so they could get her O2 into her lungs so that they could get that CO2 out.

Unfortunately they weren't able to get a good iv in. This is because of the high CO2 and her heart working so hard that her veins had begun to narrow. They informed us they'd have to use a drill and insert a line directly into her Tibia. This would get the meds needed to sedate her, and paralyze her body, and pain meds needed directly into her bone marrow.

They did that (I walked out), then kicked us out to intubate her, and we headed to the house to pick up some items as soon as we knew she was stable to be transported in the helicopter.

We arrived here at Childrens Hospital Oakland just a little while ago and were greeted with a "You cant see her right now because the dr and nurses are trying to get an iv in" which didn't sit well. Voiced opinions about that later, we were ok with sittin the waiting room and so here we are, waiting to find out what the HELL is going on.

Here's some pictures .. they are graphic . be warned.