well it's kind of being busy.
end of September Owen wasn't himself he was being sick every day for a week, and he also hadn't gone to the toilet for a week also, so that was contributing towards him being sick, Owen normally goes to school on a Thursday and then respite on Thursday night and back to school on Friday, which he went to school and respite, but couldn't' go to school on the Friday (23rd September) as he was to ill, i went to pick him up and took him home, he was in his school clothes ready for school as that's all i had packed for him, so i decided to change him into some pajamas so he would be more comfortable, but when i was changing him i found some spots on his back and tummy, i did the glass test and some spots disappeared but others didn't, i got worried and asked family and friends what to do, but they can give only so much help and advice so i rang NHS direct, and it's nice to get some professional advice but they don't know Owen so they can't give and exact opinion and also they always tell us to go to hospital because of his medical condition.
the doctor came out to the house once i told her over the phone what was wrong, his temperature was also going up, when the doctor saw Owen she did seem a bit concerned and said i think he should go to hospital and then 10 minutes later she said to leave it and see how he is the next day, so she wasn't;t very helpful.
i was still worried as the doctor didn't give any actually advice and i was getting more concerned, so i rang an ambulance and we went to hospital, we stayed in hospital over night while we waited for Owens blood results to come back and for Owen to do a urine test, Owens blood and urine were fine so we went home on the Saturday morning.
he still wasn't himself over the weekend and he was getting worse, he was still being sick but he had gone to the toilet after giving him lots of movicol, but his temp was still very high and the rash had worsened extremely worse, it had spread all over his back and tummy and down to his groin and was all over his hands and fingers, his gastronomy sight (feeding tube sight) was red raw and bleeding and water leaking, this was by Monday morning then, so i rang his community nurse as i the main area was his tummy and she knows about his tummy and gastronomy, we went to a few appointments first as we couldn't see her till the afternoon, first he went for another eye test ( like a EEG test), and then we went to get Owen new splints for his feet, we then went to see Owens' community nurse, she was very concerned and went to get another opinion from another community nurse and there was a top pediatrician there so she quickly got her to have a look, they were all very concerned and rang the hospital ward to say we were going in as he needed antibiotics immediately as there was something wrong.
we stayed in hospital from the Monday until the Wednesday (26th-28th September), and he stayed o antibiotics and he also has a new medication now domperidome that helps his digestive system and helps everything go through his system faster, also he's know on different milk (milk incase your allergic to it).
the doctors said it was a viral infection in the blood (like septicemia), we got the help we needed just in time for Owen, he was so brave, he had lots of blood taken and had yet another canular in, he's so brave when he has to have them in, i don't think i would be able to myself, he really couldn't be bothered he only wanted cuddles, slept or watch Cbeebies.
he's back to his normal self now, he;s finished his course of antibiotics, he hasn't being sick since coming out of hospital, he's going to the toilet everyday, he;s being very happy, lots of smiles, he was a little clingy yesterday ad wanted cuddles.
Owens scoliosis has worsened though, we saw the occupational therapist this week and i told her i cant use his equipment anymore as he will not tolerate it, so we are going for a appointment for him to have molded equipment that will make him more comfortable hopefully, also his muscle tone is so bad were having to decrease his baclofen to 3mls, 4 times a day and each week increase it a ML so in about 2 weeks he should be back to 6mls but 4 times a day instead of 3, and hopefully that may help, if not he may need different medication altogether for his tone, and we need a different car seat and were not sure if they do molded car seats if not then we will have to change cars again as the mold will go on a pram base and have to be put into a car with him i it, as he does on the school bus.
also yesterday he was screaming in his car seat, crying like mad, and then all of a sudden he went quiet, and his eyes were closed but his facial expression still looked like he was crying, things like this have happened in the past or he just closes his eyes for a few seconds, i didn't know if it could be an absent seizure ( a seizure were you don't have any actual proper signs of a seizure), so i rang his pediatric today and she said to keep a diary of when these happen and also, to tell his neurologist when we next see him, as if it is a seizure, he could be worsening without us knowing, anything could be appearing his brain may be changing because of this,or his muscle tone may be changing because of this, we'll have to see what happens.
and last Owens' social worker has granted us some carpet for Owens bedroom downstairs and carpet i the living room, as we have no carpet anywhere in the house and are desperate for it, and Owens room he uses and he uses the living room everyday, also shes' going to get him some nice furniture for his room, for storage.
here's a picture in mummy's bed, with lots of townels ust incase e's going to be sick, which now when he's in mummy's bed we don't need any.