Wednesday, December 19, 2012
Day 45 Fish Oil study~what a day!!!
Today Jon and I split our time so I could stay here and do laundry and repack some things since we are going home on Saturday. He took the morning shift. Selah was agitated and unhappy during therapy. He came home for lunch and stayed with the little kids while I took the boys to see "The Hobbit" finally. I dropped them off and they got the last pair of Hobbit 3D glasses, they were so happy
I went to spend the afternoon with Selah and went to all her afternoon therapies. She got through the first 2 ok and then by number three she had had it! She stiffen and her heart rate went up to the 130s. I saw her arm/hand starting to shake and I was freaking out on the inside because that looked like the beginning of storming! The therapist carried her back to her room and laid her down and her heart rate slowed down within 5 minutes. Then she put a "weighted blanket" on her....oh my Lord.... Selah freaked out! Within a couple of minutes her heart rate was up to 180, She started shaking all over and her arms started to come up. She was also breathing weird, like a whistling noise. I ran for the nurse at the same time her alarm started sounding and everyone came running. By then her heart rate was in the 200's. I had already taken the blanket off. One nurse went for the airway (although her oxygen was at 100% she did NOT sound good) They called for the respiratory team. I told the charge nurse I thought she was storming and asked frantically for her meds! The nurse went to get the meds and by the time she got back, Selah had her heart rate down to the 170s and lower....within 15 minutes it was all over....then my legs started shaking!!! So I asked them not to give her meds and they didn't.
The consensus is that it was not a storm. It was an "event" that involved some sticky gunk in her throat as well as her being upset from therapy and the blanket. It looked like a "storm" but she did not sweat, she brought herself down to normal so quick and her blood pressure was normal when they took it. So it could not have been a storming issue, thank God, after 45 days it would be a shame for that to have happened
Her one med that helps control her BP and the storming was lower today and the new drug that is supposed to wake her up was raised yesterday. Perhaps this is Selah becoming more aware? It scared the crap out of me! We'll discuss her meds tomorrow. We are leaning towards giving her a little more time to see if she can adjust before putting her back to her original dose. We know that she will be here until January now as they work on her meds.
This episode scared me today...all I could think is what if we were home and that happened and I was alone with her and the other two little ones??? After it happened, I called the home nursing agency to see if I could find out how many nursing hours she will get. I didn't talk to our worker today but he will be in tomorrow. Please pray that we will get 24 hour nursing. I can not imagine the responsibility that lies ahead. I've dealt with alot before but this is way out of my league! I remember when Sam was coming home from the NICU on 3 machines I was very confident and stupid, all I wanted to do was to get him home! Stupid me! At that point, with the insurance we had we couldn't get nursing at home and I naively said that I didn't care..... Since then I have said I would not live that first year over for $1 million dollars....Now it looks like I'm going to have to relive that year and then some.... I will be honest I am scared to bring her home. I'm not afraid of Selah but I'm afraid of her dying! I pray that we get 24 hour nursing! I know what we went through with Sam and he had less issues than Selah does. Dear God it scares me to death! Being a parent is a huge responsibility, being a parent to a child with such special needs is overwhelming responsibility and when you add in there 4 other children, 2 who are severely handicapped and a husband that works two jobs.... I truly do not know how we are going to do it. We want her home with us and feel that is the best for her overall and it is best for us, but it is scary. She was fine for the rest of the day and so far tonight.
So we don't know if today was good or bad....is she waking up more and this is part of the agitation that would naturally come with that? But if she were waking up more it would seem she would at least be doing the things she was doing in NY and be more involved in her therapy.... The thought has been raised maybe, just maybe, she is not cooperating because she is unhappy dealing with new staff and a new place. That would almost suggest more cognitive skill than we could imagine at this point but who knows. She certainly isn't sleepy or unaware of what is going on. Having institutional autism has to play in also.... We don't know what to think and try not to analyze it too much, only time will tell....
When I am down, I have to remember she has come so much further than anyone ever expected...she is aware of us, reacts to things she doesn't like in an obvious manner and is not "just a body on a bed" I am thankful for that!!!
Please pray, she has regressed in many areas, no one knows why and now this...we are heartsick but we also realize that there are so many unknowns with her that this could be something going on good (as far as her being more aware) I just do not know. But I can tell you we are sad and worried. Please pray!!!!