Snag

So we ran into a bit of a snag last night. Before I begin, let me say Ellie is doing fine now. But we had a rough night.

The first ngiht here in ICU there was a time when her o2 dropped and even thouh ehr bi-pap was on her respiration (# of breaths) dropped. They said that she must have been obstructing (her airway was being blocked by something---tongue? airway?? etc...).

We then last night at 2 AM her o2 dropped to the 70's for no apparent reason even though she was still on the bi-pap. After a few minutes she came back up.

At 3 AM it got even worse. Her o2 dropped to 38. Her respirations dropped to 6 (even though the machine was giving her 22 breaths per minute). I was talking loudly to her telling her to breath, I was blowing in her face to startle her into breathing, I was vigorously rubbing her chest to get her to breathe. THe nurse called for the charge nurse and the Dr. started bagging her (covering her nose and mouth and forcing breaths of air into her). She was blue. I REALLY REALLY thought they were going to push the code blue button. It was really scary.

Her eyes were rolling up in her head, so I'm 99% sure she was having a seizure. It was probably what the other 2 times were also.

I was there when they called a code blue on her before (when she was 5 1/2 months old). It was very scary. And last night was even scarier because I had seen it before.

And an hour later she dropped to the 70's again.

THey wrote orders to give her medicine if she is seizing, drops her sats and they can't pull her out of it. If we can stop the seizure then the machine (bi-pap) can take over. THe risk is that the meds can depress your breathing, which hers in this case, would already be depressed.

This morning she is awake and alert. She is smiling and happy.

One other "normal" seizure for her this morning. Eyes twitchng and arm twitching. But sats did not drop.

THrough the years her seizures have gone through cycles. She will ahve one type of seizure for months to a year. THen all of a sudden it will morph and she will get rid of that kind of seizure and start into a new kind. If that is what is happening then we are in big trouble. I don't think that's the case though. I still think she has an infection-they just can't find it.

We have been through at least 10 seizure meds and none helped. She has a vagel nerve stimulator that helped for a year, but then it made things worse, so it is turned off. We have thought of doing the ketogenic diet, and maybe it's time.

ENT came by, they think the trach site infection is just a skin infection. THey don't think it's a fistula (opening into her trachea). If it keeps coming back, then they would think about going in and surgically looking for a fistula and fixing it by overlapping the muscles.

Her trach site and lymph node look pretty good.

THe hospitalist (ie: hospital pediatrician) thinks the groin spots are not infection. Wound care came by and said that some scars stay red. Especially since it's in her diaper area, the diaper is probably rubbing it and it's always moist.

The hospitalist is going to stop the IV antibiotics. He thinks the infections are looking better. Plus last night and this moning about 2 hours after administering it she got a rash on her torso and limbs. It wasn't bad. Last night they gave her benadryl and today it went away on it's own.

THey are going to send neurology in to consult. We had an MRI scheduled for next Week anyway (to look at her brain to try and find a reason for her temp/heart rate drops), but I'm thinking now they will probably do it inpatient instead.

So far today she has had blood work, chest x-rays and abdomin x-rays to look at stool. She has only had 1 small BM in about 7 days.

We will be giving her an enema and sending off a stool sample.

Like I said, today she is doing good.

We got to play hospital Bingo and tell some jokes over the TV. (They do it every wed. You play, get a prize, you can call in on the phone and tell them jokes that they broadcast) It's fun and gives you something to break up the days and something to look forward to.

Needless to say, we won't be coming home anytime soon (at least not today or tomorrow like I previously stated).

THey have a lot more tests to run. Today I am working on getting an oscillating mattress for her. It fills different pockets with air and the poskets go through cycles of being blown up or beng deflated. It prevents bedsores. SHe has one at home and if she is going to be in the hospital for more than a few days, then she needs it. Especially because for some reason (maybe her scoliosis) I can't lay her on her side without her dropping her respirations and her sats. (That has only been this hospitalization).

We are also going to give her a bath. Which I desperately need also.

So that's the plan for today.