Starting feeds

So yesterday they started slow and worked up on giving her pedialyte.  Her spasms started up badly again.  I asked them to turn off the feeds for a while.  They didn't want to, but did anyway.  The spasms got slightly better, but did not go away.  We restarted the pedialyte.  Today we will be slowly adding her regular formula into the equation and getting her up to her full home feeds.

Last night she dropped her body temp to 90 F.  and her heartrate to the high 40s.  This is much more normal and she hasn't done this for quite a while, so to me this is a sign that she is getting better.  They sent the Dr. in and she was worried that her heartrate had dropped into the 40's, a told her it was normal and I was not worried.  (It doesn't drop into the 40's too often...but it is not unheard of.  Usually I catch it before it gets quite that severe, but I guess I think I'm on vacation here with someone else watching her).  We got the baer hugger warming blanket and warmed her up.  It took maybe an hour and a half.

Yesterday she seemed "on edge", ready to have a seizure all day, her eyes were just not quite as stable as they typically are.  Last night she had twice where she dropped her oxygen while already on bipap and oxygen.  We have learned that these are siezures.  There is nothing you can do to improve her oxygen.  Even though the bipap is on and is delivering breaths of air to her, her chest does not rise and fall.  You can try repositioning her, raising her chin, turning up the oxygen, suctioning...it doesn't matter...her oxygen stays low (typically in the 70's but sometimes lower) and then all of a sudden it immediately pops up to the high 90's where it should be.  The nurses kind of freak out because it is kind of long...5-10 minutes...but they trusted me and didn't push the code blue button.  Even if they pushed the code blue button they would treat it all wrong.  They would want to bag her (push air into her lungs) and intubate her (put a breathing tube in), when what would actually help would be giving her ativan or diastat (emergency seizure meds) to stop the seizure.  But if you can just not freak out and be patient, then she will come out of it and be fine.

Yesterday when I talked with urology he said that we were going to cath her twice a day, but he didn't sa anything about doing bladder scans.  Well I woke up in the middle of the night with 3 nurses around Ellie and the are doing a bladder scan--in the middle of the night--that I didn't even know they were going to be doing at all.  I kind of groggily got mad at them and told them that she doesn't pee during the night.  They said the Dr. had ordered bladder scans every 6 hours.  The nurse and I talked this morning and they are going to talk to urology and have them say not to do the bladder scans during the night.  Because I am not going to be getting up in the middle of the night and cathing her, so why scan her bladder during the night?

This morning when I woke up and looked at her monitors her heartrate was at 130 whereas yesterday it was in the 70's or 80's.  I jumped out of bed and ripped her blankets off.  I took her temp and it was at 99 F (very hot for her).  I was upset with the nurses  if her heartrate is elevated I immediately think her temperature is up, but even if you didn't think that you should think pain.  So either do something about it, or wake up Mom and consult.  They did nothing.  I calmly called the nurses in and told them (once again) that her heartrate and temperature are best friends...if one goes up they both go up, if one goes down they both go down.  So if I see a heartrate of 130 I know she is really hot and her blankets should have been taken off and her temperature should have been taken.  I asked them to please make sure this message gets passed on tot eh next nurses.  They said they didn't know and they would make sure the message got passed along.  It would be one thing if I hadn't told one of the previous nurses, but I had...the message just got lost along the way.  So now she is stripped down and cooling off.

She is awake and alert and doing well this morning.  I have seen her stomach spasm on it's own just a bit, but not much, but it still does it if you touch her stomach.

Her urine looked light and normal.

They are going to switch her antibiotic to another one that the culture results seemed to respond to better.

I am hopeful that we will go home tomorrow (Thurs).