My worst Fear

We are hospitalized again at OHSU. Wednesday everything was totally normal and I dropped kids off at school, had a good day, then picked kids up. While I was waiting for Lala to come out of school at 4pm I noticed Baybeblue was breathing heavy and fast. I noticed it but wasnt alarmed because her seizures often make her breath fast afterwards. We got home at 430 and when I took Baybe inside she started crying and whining like she was in pain. I checked her out and then snuggled her up and gave her love til she passed out. Ten minutes later she woke up having a seizure. I felt her and her feet and hands were ice cold but her head and body were burning hot. I took her temp and it was 103.7. I called the doc to confirm on fever meds dosage for her and then gave it to her. I waited a while then re took temp and it was 104. She was whining in pain and breathing very heavy and fast so I called the doc back. They called E.r. to let them know we were on our way. After a long long night in the E.R. she was admitted. She was not breathing well enough on her own so they put her on oxygen and swabbed her little nose for the swine flu. Yesterday all day was pretty uneventful, lots of waiting and observing. Until last night we got her off the oxygen breathing well and then we went to bed. I couldnt fall asleep( I have insomnia now because I quite smoking 11 days ago) and then at 2am her alarms started going off, her oxygen level was in the 60's and I was trying to figure out what was going on when the nurses came rushing in and then it stopped and she was fine oxygen went back up. Well I didnt even try to go back to sleep then. I watched her and she started whining in her sleep and then I was watching her monitor and one line went flat so I looked at her and she wasnt breathing. I started counting and the alarms started going off again and the nurses ran in and I got to 10 seconds and then she took a big breath and went back to normal. So we all stood there forever watching and she was ok. They said they could go back and read what the monitor was doing and try to figure out what was happening. So then this morning they said that they looked at the breath holding and also they saw several instances of missed heartbeats and irregular heartbeats. This has happened almost everytime we have been hospitalized so it is now drawing attention. I guess its ok for it to happen every once in a while but when it happens regularly then its a bigger deal. So now we are just waiting for the results from the flu should be either late tonite or tomorrow morning. I think its great that the nurses have had to deal with the sprinkle meds for the last few days that I was having so much trouble with, and YES they had trouble too so we are switching back to the other form right away. EVen though I had already decided to do that anyway It was nice to see I wasnt the only one that couldnt do it. Also the pharmacy confirmed that mixing it with hot water runs the meds so everytime I have done that the meds havent been working which is contributing to her increased seizures. Yesterday she had a seizure almost every min of the entire day escept when she was sleeping. Today has been the same she has been seizing the whole time the docs have been in here several times so they are discussing it now. She is still overall doing well and we just got the results back early and she does not have the flu!!!!!!!!!!!!!! YAY so what does she have? we dont know. We are going to observe her for the day and see how she is doing, and try to figure out what they want to do about the breath holding and increased seizures and when shes stable we will be able to go home. Wow what a relief they literally just walked in and told me while I am writing this so I gota go tell everyone else. Good news is we got to see our favorite nurse stephanie and many other familiar faces. One nurse came in that I didnt know and she said, "do you recognize me, because I dont know you but all the other nurses said EVERYONE knows you and if they dont then they will eventually. I think thats hillarious and anyone who really knows me will too. I have a tendancy to speak my mind and make my presence known especially in hospital situations. Thats just how I do. For instance while I was here this time I spoke to the social workers and advocates to demand some new policies regarding there way informing the patients about there options for food resources while there staying in the hospital. If you have read my older blogs you would see when they upset me for telling so many different answers to same questions. I told them how some nurses say one thing and the next says something totally different. They agreed there was no policy in place regarding this. So then they ha to talk to the administration and they are going to fix the problem. Then I suggested a fundraiser to buy food tickets for parents that come in with there sick kids. The last thing the parents should be thinking about is what they are going to eat and there are no meals for parents here. Anyway people brought me groceries but I can imagine some people probably are pretty screwed while there here. So they arranged for me to talk to the OHSU foundation for fundraising so that I could talk to them about setting it up. So there are alot of new people that know me now! Thank you for all your good wishes they keep us both strong.