Owens started being sick again he was being sick with diarrhea for a week and a half but this time he sicked up after every feed and so i had to put him on dioralyte which i hate to do as it's only water and salt, but i have to use it just to keep fluids in him, but he was also sick with the dioralyte, so there was nothing else i could do except take him to hospital as if he was even sicking water up then he would need a drip, we went to hospital and we waited around 4 hours 2 of those hours was waiting just for a bed for Owen, we came out the next day and the hospital told me to put him on a feed of 20mls every hour on his pump, which in 24 hours he would only be getting around 480mls which for his age he should be having 1200mls a day and his normal feeds are only 800mls without him being sick, but i kept him on the 20mls an hour for 2 days and he wasn't sick, so i tryed to increase it to 25mls and hour but he started being sick again, so i put him back on 20mls and hour for another 2 days, Owen seemed to perk up a little so i stopped his feed and did a bolus feed every few hour to try an get 800mls in a day which i managed, he's know on 1200mls a day which he has never being on, it's the most amount of milk he ever had a day and accepting it also, i think he came down with a bug which was why he was unwell, but i am a little annoyed the hospital didn't pick up on it, we are a little restricted at the moment because his feeding is a continues feed from 8am in the morning until 11pm at night, and Owen cannot be moved around allot as he'll be sick, so we have to stay inside most of the day and Owen has to be layed down, iv'e tryed sitting him on my knee of him laying on me but he's just getting to uncomfortable and he's happy enough layed on his side, it is difficult when we have appointments as i have to organize when ill have to stop his feed which is usually an hour before we do anything and then straight away back on it when were home, i know it's not the best situation but aslong as Owens' happy with his feeds at the moment and he's tolerating it that's all that matter, and he's started to getting some little chubby legs, his weight it the highest it's every being which he is still really underweight for his age but we know he'll never be a normal weight for his age.
we went to the hospital last Tuesday (a week ago tomorrow) for Owen to have his Botox, his endoscopy and for them to check his hips all while he was asleep, we got to the hospital at 7am and Owen ad his numbing cream put on his hands, put on his gown for theater, we were all ready, Owen was a little unsettled but bearing in mind he hadn't had any breakfast as he had to fast (not have any food or fluids) it was 8:30am when the doctor came to see us who then told us Owen couldn't have his Botox or his endoscopy or his hips looked at as there weren't any beds on the high dependency unit or the intensive care unit, which can't be helped but they could of rang me up before we got everything ready and pack including an overnight bag and they could of told us before we went there weren't any beds instead of going to the hospital getting his numbing cream and getting into the gown, i was very annoyed but there wasn't anything i could do except go back home and wait another month for the appointment to come through, which is a little bit of a nightmare as it was the perfect time to do it as Owen wasn't at school for 2 weeks so he had time to recover and do his therapy, also all the doctor will have to try and do it again for the same day as he's having 3 different things so there will be 3 different doctors, the reason Owen needs a bed in high dependency or intensive care booked is when he is put to sleep under general anesthetic his heart rate can go sky high and his oxygen levels can go really low and he normally has to go to high dependency unit know, Owen having his MRI scan in Leeds on the 3rd march and will be under general anesthetic so he may have to go to high dependency depending how he is.
i have being trying to use Owen specialist pram more as he really doesn't like it and is extremely uncomfortable in it, but I'm still having no luck and it's even harder trying to get him in it when he's on his feed constantly so when a feed finishes i pop him in his chair and take him around the house (downstairs) which after 5-10 minutes, he's crying but not a normal cry a high pitched scream cry from the pain, he's the same in his car seat after 10-15 minutes he's crying from the pain, the ibuprofen is helping allot but he's still in pain, i am still unsure what pram to take on holiday, i am taking Owen's 3 wheeler but then it's down to his specialist pram and his normal basic one, which the basic pram he's fine in, but occupational therapy want me to take the specialist one, i have being thinking, i know Owens' posture isn't going to get any better and were just trying to manage it, but while were trying to do that were putting him in more pain and discomfort, i know he's not going to be here forever and i think why bother doing this that's making him unhappy and in so much pain and let him be comfortable and happy, i know it's occupational to help with his posture and the way he sits but it's not helping him.
it's a month today until we go to Florida, I'm getting more excited but it still doesn't feel like it's going to happen until it does happen, i keep telling Owen but he doesn't understand me, my little sister doesn't really understand me she knows were going to Disney world Florida and she'll see Mickey mouse and toy story but she doesn't actually understand it all, the only thing I'm concerned about it the flight, i know it's going to be really hard for 9 hours with Owen on my knee because i know he wont sit in the specialist car seat he's going to be traveling in.
Owen was in the local newspaper last week, it was meant to be an update on how Owen is but it was all made about Owen trip to the holiday, i thought they would say about the holiday but more about how he is know compared to how he was when he was last in the paper.
write back soon
below is Owen in the snow, and me and Owen taking pictures for the newspaper