William came out of hospital last Friday. The changes in his drugs seems to have done the trick for now and his fits are back to normal. He had a good weekend but then yesterday he seemed to be coming down with something else. He's been waking up in the night being sick, crying when he coughs (so we think his throat hurts) and being regularly sick. He's currently having his feeds very slow on account of him being sicky, so having just spent the last hour and a half feeding him he has just out of nowhere projectiled all of it back out so we're back onto the dioralite for a bit.
We're pretty much house bound again at the moment, until his sick calms down and this sore throat thing goes. Tomorrow he has his vaccines scheduled in. This is now our third attempt at getting his jabs as the last two times we were meant to go he was poorly/in hospital. Hopefully he'll keep his temperature down over night or we'll have to cancel again.
In all honesty life feels like a load of crap at the moment.
Wednesday, 18 January 2012
Thursday, 12 January 2012
Thursday 12th January
Just a quick update whilst we're home collecting changes of clothes.
William has been in hospital since Monday. We took him in initially first thing on Saturday morning after being up half the night with him. He had a bit of a temperature and was feverish but was fitting a lot. They checked him over and gave him antibiotics and we went home. However he continued to fit a lot all weekend and on Sunday night we decided to give him Midazolam (his emergency rescue medicine). By Monday his temperature was fine but he was still fitting a lot. By lunch time he had begun doing some quite violent tonic clonic seizures which in hindsight I think were making him reflux and he was going purple as a result because he couldn't breathe. I called the hospital and they said to call an ambulance. The paramedics were lovely and took us in to Holly Ward. They were really reassuring and said they'd probably see us again which I thought was a nice thing to say because it put me at ease about calling them. (I really hate calling for an ambulance because I don't want to be over worried!)
At the hospital he settled down after being given a different medicine (Clobozam) and we waited to see his consultant on Tuesday morning. He seemed well on Tuesday morning but then late morning had a series of bad fits again where he was going purple. He continued to have fits throughout the day but not so severe ones. Wednesday morning he did the same again and had another bad spell which was thankfully seen by his doctor. She decided to give him another dose of Midazolam which knocked him out for the rest of the afternoon. In the evening he was in really good spirits but then by 8 he'd started fitting again. Thankfully our doctor popped into see us before she left for the day and decided he needed another dose of Midazolam which she gave. She then left for the evening leaving instructions with the registrar that should he have another run of bad fits before 7 he would need to be given Phenytoin (another new drug to us) through an IV line. Thankfully he was ok through the night though. Today he has had several clusters of fits but none too severe that he's needed intervention. He has been taken back off the clobozam as it wasn't making a difference and his regular phenobarb dose has been increased as of last night.
Today we were able to see the doctor from Addenbrookes who sees William from time to time. He happened to be at the hospital for clinics and came up to see William with William's regular doctor. He has decided to start William on another new drug - Topiramate. This will probably be started today. It is hoped that this drug can be introduced and then the phenobarb will eventually be weaned away but I told the doctor I'd be very impressed if he got William off it as its the only thing that works really well for him. Should this new drug not help William will be referred to Addenbrookes to go on to the Ketogenic diet but this won't be yet hopefully. We really are starting to run out of drugs now.
I quizzed the doctor on what would happen if they couldn't bring William's fits under control and she said we were still a way off that as we still had other options to try. However when we reach that point we would simply have to manage as best we could and use drugs such as morphine to keep William comfortable. I really hope it never comes to that as I think this would be a long drawn out hideous ordeal to go through for all of us.
It's been a really hard few days, not least because I'm spending my second birthday in a row in hospital. It's a very uncertain time and the hospital is a boring place much of the time, I feel like my brain is dying!
William remains a trooper often smiling as he comes out of a fit, while his doctor and I despair at him! It's such a battle of emotions, once minute hes struggling to breathe, choking while fitting so hard his whole body is jumping on the bed, then the next he's happy as larry. One minute we're thinking how much more of this can we all take and the next we're desperate to have many many more days of happy William smiles. It's really hard. There is one particular doctor and one particular nurse who have been amazing at the hospital and we are so thankful for them.
That's all for now. We're heading back to the hospital again now to relieve Nana of her baby-sitting duties.
William has been in hospital since Monday. We took him in initially first thing on Saturday morning after being up half the night with him. He had a bit of a temperature and was feverish but was fitting a lot. They checked him over and gave him antibiotics and we went home. However he continued to fit a lot all weekend and on Sunday night we decided to give him Midazolam (his emergency rescue medicine). By Monday his temperature was fine but he was still fitting a lot. By lunch time he had begun doing some quite violent tonic clonic seizures which in hindsight I think were making him reflux and he was going purple as a result because he couldn't breathe. I called the hospital and they said to call an ambulance. The paramedics were lovely and took us in to Holly Ward. They were really reassuring and said they'd probably see us again which I thought was a nice thing to say because it put me at ease about calling them. (I really hate calling for an ambulance because I don't want to be over worried!)
At the hospital he settled down after being given a different medicine (Clobozam) and we waited to see his consultant on Tuesday morning. He seemed well on Tuesday morning but then late morning had a series of bad fits again where he was going purple. He continued to have fits throughout the day but not so severe ones. Wednesday morning he did the same again and had another bad spell which was thankfully seen by his doctor. She decided to give him another dose of Midazolam which knocked him out for the rest of the afternoon. In the evening he was in really good spirits but then by 8 he'd started fitting again. Thankfully our doctor popped into see us before she left for the day and decided he needed another dose of Midazolam which she gave. She then left for the evening leaving instructions with the registrar that should he have another run of bad fits before 7 he would need to be given Phenytoin (another new drug to us) through an IV line. Thankfully he was ok through the night though. Today he has had several clusters of fits but none too severe that he's needed intervention. He has been taken back off the clobozam as it wasn't making a difference and his regular phenobarb dose has been increased as of last night.
Today we were able to see the doctor from Addenbrookes who sees William from time to time. He happened to be at the hospital for clinics and came up to see William with William's regular doctor. He has decided to start William on another new drug - Topiramate. This will probably be started today. It is hoped that this drug can be introduced and then the phenobarb will eventually be weaned away but I told the doctor I'd be very impressed if he got William off it as its the only thing that works really well for him. Should this new drug not help William will be referred to Addenbrookes to go on to the Ketogenic diet but this won't be yet hopefully. We really are starting to run out of drugs now.
I quizzed the doctor on what would happen if they couldn't bring William's fits under control and she said we were still a way off that as we still had other options to try. However when we reach that point we would simply have to manage as best we could and use drugs such as morphine to keep William comfortable. I really hope it never comes to that as I think this would be a long drawn out hideous ordeal to go through for all of us.
It's been a really hard few days, not least because I'm spending my second birthday in a row in hospital. It's a very uncertain time and the hospital is a boring place much of the time, I feel like my brain is dying!
William remains a trooper often smiling as he comes out of a fit, while his doctor and I despair at him! It's such a battle of emotions, once minute hes struggling to breathe, choking while fitting so hard his whole body is jumping on the bed, then the next he's happy as larry. One minute we're thinking how much more of this can we all take and the next we're desperate to have many many more days of happy William smiles. It's really hard. There is one particular doctor and one particular nurse who have been amazing at the hospital and we are so thankful for them.
That's all for now. We're heading back to the hospital again now to relieve Nana of her baby-sitting duties.
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