Well after nearly four days at home William is back in hospital. He'd been doing really well and had no fits at all yesterday but his cough got worse overnight and he's been more snotty today. That wasn't of much consequence but then today he suddenly had a fit about 3pm. It wasn't a big one but it was the type that make him de-sat. About half an hour later in the garden centre car park he had another one and went very grey in his face. We tentatively drove home but after having several more fits within the next hour we had to call the hospital who asked us to go in. Once we arrived they calmed down but he's had a couple more again this evening and has been de-satting quite badly with them and needing some oxygen. They've given him another loading dose of phenobarbitol tonight. His consultant should be in tomorrow so we'll see what she says and decide where to go from there.
I don't know what else to say. I am well and truly fed up. As wonderful and welcoming and light hearted as the lovely Holly Ward nurses are the fact remains that we have nothing that even comes close to resembling a life. Steve is trying hard to get to work as much as he can because we don't want to take the mick which leaves us with very little time together. I feel like we're in a catch 22 situation. Life with William is awful a lot of the time and life without him would be awful. I can't understand why this is happening. It's one thing to have a child like William and to cope with all that involves but we never expected we would be in and out of hospital this much. We spend our lives packing and unpacking hopsital bags, trying to figure out where we're going to get our next meal, barely seeing each other, getting awful sleep apart, not being able to make any plans, cancelling any plans we do make. We never thought it would be like this and it's a completely crappy existence. Once again life feels completely unsustainable and I feel completely abandoned by a God who makes no sense to me at the moment.
Tuesday, 31 May 2011
Sunday, 29 May 2011
We are home!
We were finally released from the hospital on Friday evening after William managed a whole 24 hours without any oxygen assistance. We have been sent home with another week of treatment antibiotics and then a further three weeks of what they call prophylactic antibiotics. These are just to try and keep him infection free until his operation at the end of June for his PEG. If he has any signs of a chest infection then they wont operate so these are just in case antibiotics. He seems much better at the moment, is quite smiley and is having few fits. He's still breathing noisily and is breathing quite quickly but hopefully this will gradually improve. On Friday morning they did a synacthen test where they take blood and give William an injection of something and see how his body reacts. It's something to do with measuring the levels of steroids the body is producing. Anyway, his results for that came back good so all is well there. It was just to make sure his body is making steroids again after the course of steroids he had.
We're settling back in home well, if not a little edgy if William stays still for longer than usual! We're keeping a close eye on him, his temperature and his colour. Have you ever noticed that in life you rarely experience a single event that really changes you? Often we change over time as we go through different things, it's a slow process. Well what has happened this week feels like it has changed everything more than most one off events do. We have a very different view of William. Not only do we love him even more (having felt what it would be like to lose him) but we also see his disabilities in a new way. In some way we have learnt to embrace them more, we feel like we have a better understanding of how William works and we feel much prouder of him, whereas before we were perhaps a little embarrassed by all the things he couldn't do. We're starting to understand what makes him tick a bit more. He often laughs at seemingly nothing, he doesn't respond to the usual things a baby would and often seems in his own little world. We're now realising that the things we take for granted are the things that make William happy. Whereas we might be (temporarily) excited when we get some new clothes, or go on a good day out etc William seems to just take joy in hearing other happy voices, or in having his hair stroked. He doesn't always respond to things in the way you might expect but we're learning to spot what his reactions are. It's a steep learning curve! Often when he's gone down for a nap he'll wake up and because he doesn't cry we don't know until we go and check on him and we find him laughing at something in his cot. Who knows what!
I found another blog the other day written by a lady in America. She has twins, a boy and a girl. The little girl is perfectly healthy but the little boy (also called William!) has lissencephely. She tells this story on her blog (which i hope she won't mind me sharing) which really rung true to me...
"The sun was shining in Rochester New York! The Beyers twins and I headed to one of our favorite "old school" playgrounds made of wood with tunnels and tire swings. Blond curls and blond pony tails blowing in the breeze and reflecting sunlight; what a beautiful sight. My children captivate me. I put William in his special tomato chair in the jogging stroller and pushed him to a sunny spot. Normally playgrounds and too many children make me tense. Most do not offer much for William to do; and he is too heavy to carry around. So usually I push him in the jogger and we chase Ella yet the whole time I end up feeling stressed and guilty that he is not able to do what the handfuls of other children are doing around him. Today I let go of the guilt and the stress; do you want to know why??
I opened my eyes and saw how truly happy William was just to be in the sunshine; to hear the children laughing all around him. He was smiling and cooing and I don't think he gives a damn whether or not he is doing exactly what the other children are. It has been MY sadness and MY burden that he is not "typical".... but really it's all about quality of life. Both his quality of life and mine; life is far too short...." (taken from http://beyerstwins.blogspot.com/).
There are so many times already when our William can't join in with what other babies do and it makes me sad, but it really is true that most the time he's just happy to lie on the floor and wriggle and listen.
Another thing that struck me last night was this...I was watching Titanic (the film) and if you've ever seen it you'll know that end is really sad because someone dies. I won't say too much in case you've not seen it! Anyway, I don't know if anyone else is the same, but the reason I get sad watching sad films is I often put myself in the place of the person in the film. For example if in a film there's a couple and one of them dies then I get really sad thinking what it'd be like if Steve died. I know it's a bit depressing but I'm sure I'm not the only one that does it! Anyway I was watching Titanic, partly sad thinking how dreadful it would be if Steve died, but at the same time completely reminded of the horror of Saturday and how it felt thinking we'd lost William. I don't think I'll ever be able to watch a sad film again without that memory haunting me. Somehow it's made us see things in a different better way, it's concreted our bond with William and it's made us enjoy and love William for exactly the way he is. Steve said the other day, I'd given birth to William, but now he'd played a part in giving William life when he gave him CPR so now we've both participated in him being here!
Although spending time in hospital is never your first choice of ways to pass time, we really couldn't ask for a better children's ward to wile away our time on. The nurses are all lovely, as are most of the doctors. The ward is really well equipped and really new and everyone treats you really nicely. We're thinking of writing to the ward manager to thank them for the care we've received so far. I'm also thinking of writing to our local paper, you hear so much bad press about the NHS and we've received such great care since the start of my pregnancy, so I thought I'd write something nice!
That's all for now anyway. We are currently awaiting the arrival of Nanny Linda for a couple of days which will be lovely. Thank you for all your prayers and messages this last week and a super big thank you to our home group for the delicious meals they sent us every day in the hospital!
Here's a little video of William enjoying being back at home...
We're settling back in home well, if not a little edgy if William stays still for longer than usual! We're keeping a close eye on him, his temperature and his colour. Have you ever noticed that in life you rarely experience a single event that really changes you? Often we change over time as we go through different things, it's a slow process. Well what has happened this week feels like it has changed everything more than most one off events do. We have a very different view of William. Not only do we love him even more (having felt what it would be like to lose him) but we also see his disabilities in a new way. In some way we have learnt to embrace them more, we feel like we have a better understanding of how William works and we feel much prouder of him, whereas before we were perhaps a little embarrassed by all the things he couldn't do. We're starting to understand what makes him tick a bit more. He often laughs at seemingly nothing, he doesn't respond to the usual things a baby would and often seems in his own little world. We're now realising that the things we take for granted are the things that make William happy. Whereas we might be (temporarily) excited when we get some new clothes, or go on a good day out etc William seems to just take joy in hearing other happy voices, or in having his hair stroked. He doesn't always respond to things in the way you might expect but we're learning to spot what his reactions are. It's a steep learning curve! Often when he's gone down for a nap he'll wake up and because he doesn't cry we don't know until we go and check on him and we find him laughing at something in his cot. Who knows what!
I found another blog the other day written by a lady in America. She has twins, a boy and a girl. The little girl is perfectly healthy but the little boy (also called William!) has lissencephely. She tells this story on her blog (which i hope she won't mind me sharing) which really rung true to me...
"The sun was shining in Rochester New York! The Beyers twins and I headed to one of our favorite "old school" playgrounds made of wood with tunnels and tire swings. Blond curls and blond pony tails blowing in the breeze and reflecting sunlight; what a beautiful sight. My children captivate me. I put William in his special tomato chair in the jogging stroller and pushed him to a sunny spot. Normally playgrounds and too many children make me tense. Most do not offer much for William to do; and he is too heavy to carry around. So usually I push him in the jogger and we chase Ella yet the whole time I end up feeling stressed and guilty that he is not able to do what the handfuls of other children are doing around him. Today I let go of the guilt and the stress; do you want to know why??
I opened my eyes and saw how truly happy William was just to be in the sunshine; to hear the children laughing all around him. He was smiling and cooing and I don't think he gives a damn whether or not he is doing exactly what the other children are. It has been MY sadness and MY burden that he is not "typical".... but really it's all about quality of life. Both his quality of life and mine; life is far too short...." (taken from http://beyerstwins.blogspot.com/).
There are so many times already when our William can't join in with what other babies do and it makes me sad, but it really is true that most the time he's just happy to lie on the floor and wriggle and listen.
Another thing that struck me last night was this...I was watching Titanic (the film) and if you've ever seen it you'll know that end is really sad because someone dies. I won't say too much in case you've not seen it! Anyway, I don't know if anyone else is the same, but the reason I get sad watching sad films is I often put myself in the place of the person in the film. For example if in a film there's a couple and one of them dies then I get really sad thinking what it'd be like if Steve died. I know it's a bit depressing but I'm sure I'm not the only one that does it! Anyway I was watching Titanic, partly sad thinking how dreadful it would be if Steve died, but at the same time completely reminded of the horror of Saturday and how it felt thinking we'd lost William. I don't think I'll ever be able to watch a sad film again without that memory haunting me. Somehow it's made us see things in a different better way, it's concreted our bond with William and it's made us enjoy and love William for exactly the way he is. Steve said the other day, I'd given birth to William, but now he'd played a part in giving William life when he gave him CPR so now we've both participated in him being here!
Although spending time in hospital is never your first choice of ways to pass time, we really couldn't ask for a better children's ward to wile away our time on. The nurses are all lovely, as are most of the doctors. The ward is really well equipped and really new and everyone treats you really nicely. We're thinking of writing to the ward manager to thank them for the care we've received so far. I'm also thinking of writing to our local paper, you hear so much bad press about the NHS and we've received such great care since the start of my pregnancy, so I thought I'd write something nice!
That's all for now anyway. We are currently awaiting the arrival of Nanny Linda for a couple of days which will be lovely. Thank you for all your prayers and messages this last week and a super big thank you to our home group for the delicious meals they sent us every day in the hospital!
Here's a little video of William enjoying being back at home...
Wednesday, 25 May 2011
Getting bored of updates yet???
Still not a lot to say and I don't want to stay up writitng for ages because I'm trying to realign my sleeping patterns to that of a regular person so here is some bullet points of what happened today...
- William been off oxygen most the day, but given a bit tonight while sleeping to help him
- Moved rooms because infectious people arrived so we had to give up our lovely side room and move onto a bay so they could have private rooms.
- Had a long chat with W's consultant and new doctor about all his problems
- His consultant thinks he is having fits that make him go blue but thinks Saturdays major episode may have been due to mucus blockage in airways
- Going to carry out test to check how his body has settled back down after the steroids he had a bit ago and consider giving him small regular steroid dose if body isnt producing the steroids it should be
- Carry out check on his heart - just precautionary
- Dicussed plans with regards to medicines for seizures. The vigabatrin he is on should only be short term as if you're on it long term it can permanently damage your peripheral vision. Seen as William has hardly any vision, if we find this drug works we may have to choose to sacrifice his peripheral vision so we can control his fits. She has a list of other meds we can try including a special diet called a ketogenic diet.
- We spent more time with his new doctor and have decided we really really like her! She's really friendly.
- We discussed keeping him chest infection free ready for his PEG operation at the end of June and the medicines we might have to help with this. They don't operate if you are ill at all.
Tuesday, 24 May 2011
And another...
Not a lot else new again.
William will hopefully finish his antibiotics tomorrow. He's been out of the oxygen most the day but needed a bit more this evening because his levels were a bit low when he slept due to his chest infection. Can't remember if I mentioned before but our consultant is going on leave for a year in July. The doctor who will be taking over for the year is one we know pretty well and who we like a lot. She came in to see us today and had a good chat about what had happened. She thinks the episode was most likely either a fit or that he had mucus stuck in his throat blocking his airways. I think he'll be in hospital for a little while longer until he really gets over the chest infection and doesn't need the oxygen anymore. We might get to see his current consultant tomorrow which would be good.
This evening Steve and I were talking about what happened on Saturday. Have you ever heard that when you go through a traumatic event your brain releases some chemicals to numb it from your memory so it doesn't traumatise you? Well it turns out my brain had sort of done that! Steve was telling me that when I went to get William out of his car seat when we were driving along I started saying "oh my life, oh my life, oh my life", then when I passed William to Steve in the front once we'd pulled over I was crying "I think he's dead". I had totally forgotten all this until he said. It brings back the absolute horror of that moment.
On a very separate note...this morning I was just about ready to leave the house when I needed to go the loo. As i walked up the stairs i felt a stone in my shoe, but somewhere in my head I thought I hope it's not a spider. I got upstairs and presumably because i suspected it might be a spider i took my boot off and threw it across the floor. As i did so a rather large squashed spider fell out. The spider must have got in my boot in the night and I had walked around for a good 15 mins with it in there without realising. For someone with an absolute phobia of spiders this was definitely not a good thing to happen. I spent the next five minutes hyperventilating and trying to talk to Steve on the phone through my terrified cries. Plus I have lost my voice at the moment so he really had no idea what I was trying to say. I managed to leave the house in a different pair of shoes feeling very creeped out the whole drive to hospital. Thankfully my wonderful in laws came round the house and cleared up the spider, hoovered out all my shoes and checked around for any friends spider no.1 might have been harbouring. I spent the whole journey to hospital feeling like Job, everything was against me, but feel a bit calmer about the whole ordeal now. Boy do I hate spiders.
Oh and I forgot....today William had fun with the mobile sensory unit...
William will hopefully finish his antibiotics tomorrow. He's been out of the oxygen most the day but needed a bit more this evening because his levels were a bit low when he slept due to his chest infection. Can't remember if I mentioned before but our consultant is going on leave for a year in July. The doctor who will be taking over for the year is one we know pretty well and who we like a lot. She came in to see us today and had a good chat about what had happened. She thinks the episode was most likely either a fit or that he had mucus stuck in his throat blocking his airways. I think he'll be in hospital for a little while longer until he really gets over the chest infection and doesn't need the oxygen anymore. We might get to see his current consultant tomorrow which would be good.
This evening Steve and I were talking about what happened on Saturday. Have you ever heard that when you go through a traumatic event your brain releases some chemicals to numb it from your memory so it doesn't traumatise you? Well it turns out my brain had sort of done that! Steve was telling me that when I went to get William out of his car seat when we were driving along I started saying "oh my life, oh my life, oh my life", then when I passed William to Steve in the front once we'd pulled over I was crying "I think he's dead". I had totally forgotten all this until he said. It brings back the absolute horror of that moment.
On a very separate note...this morning I was just about ready to leave the house when I needed to go the loo. As i walked up the stairs i felt a stone in my shoe, but somewhere in my head I thought I hope it's not a spider. I got upstairs and presumably because i suspected it might be a spider i took my boot off and threw it across the floor. As i did so a rather large squashed spider fell out. The spider must have got in my boot in the night and I had walked around for a good 15 mins with it in there without realising. For someone with an absolute phobia of spiders this was definitely not a good thing to happen. I spent the next five minutes hyperventilating and trying to talk to Steve on the phone through my terrified cries. Plus I have lost my voice at the moment so he really had no idea what I was trying to say. I managed to leave the house in a different pair of shoes feeling very creeped out the whole drive to hospital. Thankfully my wonderful in laws came round the house and cleared up the spider, hoovered out all my shoes and checked around for any friends spider no.1 might have been harbouring. I spent the whole journey to hospital feeling like Job, everything was against me, but feel a bit calmer about the whole ordeal now. Boy do I hate spiders.
Oh and I forgot....today William had fun with the mobile sensory unit...
 |
| All that sensory play made me very sleepy. |
Monday, 23 May 2011
Another update
Hello,
William has made more good progress today. He had his drip taken off this afternoon so is now just being fed through his tube, hes managing three hourly feeds now. He's also spent some time out of his oxygen hood this evening and been smiling more which is good. He might get off the oxygen all together tomorrow. We are supposed to have an appointment with his doctor tomorrow anyway so are hoping to see her on the ward. We were supposed to be going to Cambridge on Wed morning for a x ray and MRI so not sure what will happen with that yet. He's still having antibiotics and today the antibiotics poo arrived! It is gross!
He had a good night last night and the nurses were really pleased with him. All in all good progress. We had a lovely dinner tonight bought provided by the Naughtens/Zam Suans! and Steve went to work this afternoon while I enjoyed some visitors. Been a faily positive day, but it's a bit miserable watching Glee on my own! Roll on having my husband back home to watch it with me (and the little man to sleep upstairs while we watch it).
William has made more good progress today. He had his drip taken off this afternoon so is now just being fed through his tube, hes managing three hourly feeds now. He's also spent some time out of his oxygen hood this evening and been smiling more which is good. He might get off the oxygen all together tomorrow. We are supposed to have an appointment with his doctor tomorrow anyway so are hoping to see her on the ward. We were supposed to be going to Cambridge on Wed morning for a x ray and MRI so not sure what will happen with that yet. He's still having antibiotics and today the antibiotics poo arrived! It is gross!
He had a good night last night and the nurses were really pleased with him. All in all good progress. We had a lovely dinner tonight bought provided by the Naughtens/Zam Suans! and Steve went to work this afternoon while I enjoyed some visitors. Been a faily positive day, but it's a bit miserable watching Glee on my own! Roll on having my husband back home to watch it with me (and the little man to sleep upstairs while we watch it).
Sunday, 22 May 2011
Update
Not much to update on tonight.
William has been more stable today. His temperature has stayed down so he's not really had any fits, just a few spasms. He's managed a few very small feeds through his tube but they think because hes got a chest infection he's having to work a bit too hard to digest the milk so he starts breathing quite fast and laboured. They did reduce his drip feeds this morning but are thinking of maybe increasing them again until he picks up a bit more. He's still in his oxygen hood but is on lower levels of oxygen than yesterday. We got him out the hood a few times today for a cuddle but he wasn't maintaining his oxygen very well so needed the mask. He's still on IV antibiotics too. We've had a few little smiles this evening so think he must be feeling a bit better. Hopefully once the antibiotics get on top of the chest infection he'll find things a bit easier and will manage more food.
We've had some much appreicated visitors today which broke the afternoon up. Steve is hoping to go into work tomorrow afternoon so nanna will be taking over for a bit with me in the afternoon. Not a lot else to say this evening. Thank you for all your messages, we really appreciate them.
William has been more stable today. His temperature has stayed down so he's not really had any fits, just a few spasms. He's managed a few very small feeds through his tube but they think because hes got a chest infection he's having to work a bit too hard to digest the milk so he starts breathing quite fast and laboured. They did reduce his drip feeds this morning but are thinking of maybe increasing them again until he picks up a bit more. He's still in his oxygen hood but is on lower levels of oxygen than yesterday. We got him out the hood a few times today for a cuddle but he wasn't maintaining his oxygen very well so needed the mask. He's still on IV antibiotics too. We've had a few little smiles this evening so think he must be feeling a bit better. Hopefully once the antibiotics get on top of the chest infection he'll find things a bit easier and will manage more food.
We've had some much appreicated visitors today which broke the afternoon up. Steve is hoping to go into work tomorrow afternoon so nanna will be taking over for a bit with me in the afternoon. Not a lot else to say this evening. Thank you for all your messages, we really appreciate them.
Saturday, 21 May 2011
Worst moment of our lives...so far
Ok quick update...
William had been a bit not his usual self the latter part of this week. Yesterday he started being quite a lot sick, and snotty, and I have a bad throat so thought we were both getting colds. He had no temperature. This morning he was really sick again. Yesterday afternoon he also had an episode where her went a bit blue but recovered fairly quickly. This is not toally unusual behaviour for him so we didnt panic because he always sorts himself out pretty quickly. This happened a few more times this morning, he would go a bit purple/blue. Right before he was sick this morning he did it again. William struggles to clear his snot/mucus so we came to the conclusion the purple/blue episodes were down to either mucus blocking his airways or were fits. When he goes blue he also has this face he pulls and he was done it before on the odd occasion so I'm pretty sure its a type of fit.
Anyway, we made a brief visit to peterborough this morning to buy something, then on our way home William started to have another of these episodes. He pulled his funny face, started to lose colour a bit and spat out a bit of mucus, except then instead of recovering he got worse and worse and worse. His lips went very grey and he was totally out of it. I took my seat belt off and got William out of his car seat. At which point Steve realised something was wrong and pulled over onto the hard shoulder. By the time I had hold of William he had gone very blue and very floppy. In panic I handed him to Steve while I called 999 and tried to explain to the dispatcher where we were. Meanwhile Steve did a bit of CPR on William who was still looking very blue. He looked completely lifeless and for about half a minute we both thought he had died. You know those machines they have on Casualty - if he'd been on one of them I'm sure it would have gone beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.
Then after a few minutes William started to come round and a police man arrived. It turns out the police man had not been sent to us but just happened to be passing. Seeing us he pulled over and stopped to see if we were ok and quickly realised we weren't. He told us to leave our car and get in the police car and he'd take us straight to A & E. By this point William had come round and was looking a bit more normal. The police man cancelled the ambulance and called through to a & e. On arrival there we were seen straight away. They put a canular in his hand and took some blood. He was given an oxygen mask and put on the monitor. They also carried out a chest X-Ray. We were then moved up to the childrens ward once he was a bit more stable. The lovely police man went to retrieve our car and bought it the hospital for us.
We're still not sure what had happened. In A&E he had a high tempertaure which took a while to come down. As a result he had quite a lot of fits when we were on the ward and had several episodes of turning blue and de-satting quite seriously. He is now in an oxygen hood and his temp has come down so hes having less fits. He's had intra-veinous antibiotics and is on a drip because hes not been given any food yet for risk of aspirating. We don't know whether the lack of breathing is due to an obstruction caused by his excess of mucus or whether it was a fit. My instinct is that it was a bad fit because I am certain he has a type of fit where he stops breathing. Hopefully we'll find out more tomorrow.
Steve is at the hospital with him. We came to an arrangement between ourselves and Steves work a while ago that in such events Steve would stay overnight and take some unpaid leave. I stayed overnight with him once and was a nervous wreck by the morning. It works better for us this way, Steve is a bit of a hero.
Today, for the first time, we felt what it would be like if William died, if only for a short time. I have no doubt we will experience this again and I am quite sure that in our life time this will happen again and not end in such a good way. Being William's mum is really hard. There are days like today where you go through so much trauma that life feels completely unsustainable and it breaks our hearts to watch William suffer so much and we think maybe it would be better for William if he went to live with his dad in heaven. And then you think you're the worst parent in the world for thinking that but such is the pain we face very frequently. I'll write more soon when I can but I wanted to finish with this song. On the way home from hospital tonight this song came on my CD. At a time when it's hard to believe there is a God that would let us all go through this, this song made me realise that if the worst thing happened at any time and we did have to face losing William, William would not have missed out. He'd be restored and he'd have the brain he should have living in the presence of his Father in heaven. You might think this morbid and depressing, but I make no apologies. The reality is that William has many serious problems, we've been told he's most likely to die from his fits or a chest infection. Today he could have died from a combination of the two.
http://www.youtube.com/watch?v=bIq1j59R6tI
How lovely is
Your dwelling place
Oh Lord Almighty,
For my soul longs
And even faints
For You
Oh, here my heart
Is satisfied (is satisfied)
Within Your presence
I see beneath
The shadow of
Your wings
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Than thousands elsewhere)
One thing I ask,
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells
(One thing I ask)
One thing I ask
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Better is one day)
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(My heart and flesh cry out)
My heart and flesh cry out
For You, the Living God
Your Spirit's water to my soul
I've tasted, and I've seen
Come once again to me
I will draw near to You
I will draw near to You
To You
Better is one day
Better is one day
Better is one day
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
William had been a bit not his usual self the latter part of this week. Yesterday he started being quite a lot sick, and snotty, and I have a bad throat so thought we were both getting colds. He had no temperature. This morning he was really sick again. Yesterday afternoon he also had an episode where her went a bit blue but recovered fairly quickly. This is not toally unusual behaviour for him so we didnt panic because he always sorts himself out pretty quickly. This happened a few more times this morning, he would go a bit purple/blue. Right before he was sick this morning he did it again. William struggles to clear his snot/mucus so we came to the conclusion the purple/blue episodes were down to either mucus blocking his airways or were fits. When he goes blue he also has this face he pulls and he was done it before on the odd occasion so I'm pretty sure its a type of fit.
Anyway, we made a brief visit to peterborough this morning to buy something, then on our way home William started to have another of these episodes. He pulled his funny face, started to lose colour a bit and spat out a bit of mucus, except then instead of recovering he got worse and worse and worse. His lips went very grey and he was totally out of it. I took my seat belt off and got William out of his car seat. At which point Steve realised something was wrong and pulled over onto the hard shoulder. By the time I had hold of William he had gone very blue and very floppy. In panic I handed him to Steve while I called 999 and tried to explain to the dispatcher where we were. Meanwhile Steve did a bit of CPR on William who was still looking very blue. He looked completely lifeless and for about half a minute we both thought he had died. You know those machines they have on Casualty - if he'd been on one of them I'm sure it would have gone beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.
Then after a few minutes William started to come round and a police man arrived. It turns out the police man had not been sent to us but just happened to be passing. Seeing us he pulled over and stopped to see if we were ok and quickly realised we weren't. He told us to leave our car and get in the police car and he'd take us straight to A & E. By this point William had come round and was looking a bit more normal. The police man cancelled the ambulance and called through to a & e. On arrival there we were seen straight away. They put a canular in his hand and took some blood. He was given an oxygen mask and put on the monitor. They also carried out a chest X-Ray. We were then moved up to the childrens ward once he was a bit more stable. The lovely police man went to retrieve our car and bought it the hospital for us.
We're still not sure what had happened. In A&E he had a high tempertaure which took a while to come down. As a result he had quite a lot of fits when we were on the ward and had several episodes of turning blue and de-satting quite seriously. He is now in an oxygen hood and his temp has come down so hes having less fits. He's had intra-veinous antibiotics and is on a drip because hes not been given any food yet for risk of aspirating. We don't know whether the lack of breathing is due to an obstruction caused by his excess of mucus or whether it was a fit. My instinct is that it was a bad fit because I am certain he has a type of fit where he stops breathing. Hopefully we'll find out more tomorrow.
Steve is at the hospital with him. We came to an arrangement between ourselves and Steves work a while ago that in such events Steve would stay overnight and take some unpaid leave. I stayed overnight with him once and was a nervous wreck by the morning. It works better for us this way, Steve is a bit of a hero.
Today, for the first time, we felt what it would be like if William died, if only for a short time. I have no doubt we will experience this again and I am quite sure that in our life time this will happen again and not end in such a good way. Being William's mum is really hard. There are days like today where you go through so much trauma that life feels completely unsustainable and it breaks our hearts to watch William suffer so much and we think maybe it would be better for William if he went to live with his dad in heaven. And then you think you're the worst parent in the world for thinking that but such is the pain we face very frequently. I'll write more soon when I can but I wanted to finish with this song. On the way home from hospital tonight this song came on my CD. At a time when it's hard to believe there is a God that would let us all go through this, this song made me realise that if the worst thing happened at any time and we did have to face losing William, William would not have missed out. He'd be restored and he'd have the brain he should have living in the presence of his Father in heaven. You might think this morbid and depressing, but I make no apologies. The reality is that William has many serious problems, we've been told he's most likely to die from his fits or a chest infection. Today he could have died from a combination of the two.
http://www.youtube.com/watch?v=bIq1j59R6tI
How lovely is
Your dwelling place
Oh Lord Almighty,
For my soul longs
And even faints
For You
Oh, here my heart
Is satisfied (is satisfied)
Within Your presence
I see beneath
The shadow of
Your wings
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Than thousands elsewhere)
One thing I ask,
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells
(One thing I ask)
One thing I ask
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Better is one day)
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(My heart and flesh cry out)
My heart and flesh cry out
For You, the Living God
Your Spirit's water to my soul
I've tasted, and I've seen
Come once again to me
I will draw near to You
I will draw near to You
To You
Better is one day
Better is one day
Better is one day
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Wednesday, 18 May 2011
Wednesday 18th May
Quite a lot has happened since our last blog entry. Following on from the chicken pox scare, we found new spots were appearing but they would go within 24 hours so we were certain it wasn't the pox. He's still getting some spots but they are tiny and don't last long, so no idea what it is!
Last week we also had a visit from the nutritional nurse who came to demonstrate the feeding pump. The feeding pump is a little machine which we connect to William and his milk and it feeds him at whatever speed we tell it to. It really is great and makes feeding him easier and more discreet. While we don't mind feeding him in public, we did get some curious looks while we sat there topping up his feeding syringe which was held in place by a chemistry clamp stand! Our feeding pump arrived yesterday and we've already been using it. It does however mean our monthly deliveries from the feeding equipment people have increased a LOT! In this photo you can see what got delivered yesterday, and we'll be getting the same again every 4 weeks! Need an extension just for storing equipment! We're going to attempt making some exciting videos showing how we used to feed William and how we do it now so watch this space...
This week William has been busy helping me and Steve out. Last Thursday he spent the afternoon helping Steve with his work then helping me to cook for home group...
Silly Comments:
Trying to be nice but not actually very helpful Comments:
Last week we also had a visit from the nutritional nurse who came to demonstrate the feeding pump. The feeding pump is a little machine which we connect to William and his milk and it feeds him at whatever speed we tell it to. It really is great and makes feeding him easier and more discreet. While we don't mind feeding him in public, we did get some curious looks while we sat there topping up his feeding syringe which was held in place by a chemistry clamp stand! Our feeding pump arrived yesterday and we've already been using it. It does however mean our monthly deliveries from the feeding equipment people have increased a LOT! In this photo you can see what got delivered yesterday, and we'll be getting the same again every 4 weeks! Need an extension just for storing equipment! We're going to attempt making some exciting videos showing how we used to feed William and how we do it now so watch this space...The date has now come through for William's PEG operation. He will go for a pre-op assessment at Addenbrookes on the 21st June and then go on for his operation on the 30th June. We have to get to Addenbrookes for 7:15 in the morning! Not sure how I'll manage that :-S We knew his operation would most likely be on a Thursday but we were hoping it wouldn't be that Thursday because it's just five days before Steve and I are off for the day to see Take That! Hopefully William will recover well and be fine to stay with his nans, otherwise Steve will have to stay behind. They only expect him to spend one night, maybe two, in the hospital so all being well it will be fine.
In terms of William's fits, his blinky fits still seem to have stopped altogther but his spasms are on the increase again. We have a consultant appointment next week so will see then about increasing his medicines again.
Last week we all had to say goodbye to our fab GP who's (sadly for us) got a new job. Since I had my kidney infection when I was pregnant he's been a great support to us, sorting out all our many prescription requests. We're all going to miss him a lot but we now have a new GP who seems just as lovely. She has some big shoes to fill though :-)
This morning William went for an appointment at the eye clinic. We had to try hard to keep him awake but the optometrist was able to have a good look at his eyes. Physically there doesn't seem to be anything wrong with his eyes, but he responded very poorly to all the eye tests they carried out, responding only to light. It is thought that as with a lot of children like William, his neurological impairment has impacted the part of his brain that interprets what his eyes are seeing. So although he can technically see, his brain can't really interpret what he's seeing. We will go back for regular appointments to see if he makes any improvement and are going to be referred to a team who will be able to offer advice on how to help William develop without relying on his sight. For example, to encourage a baby to learn to grab hold of something you would dangle a toy in front of them, but if you can't see this won't work, so they will give us other ideas. There are further tests that can be carried out in the future to examine the extent of his visual understanding but they are not really suitable to be carried out on small children.
On Saturday William took a little trip out with us and his Aunty Ang. In the morning we visited Brackley where the SU holiday we lead is held. We like to go and check the school out before the holiday ever year to count up the beds! William was very good walking round in his carrier and is looking forward to his week there in July. We all then went for lunch in the local pub. When we arrived we were the only ones there but we were shortly joined by some elderly locals. We proceeded to feed William while we ate our lunch and one particular elderly lady stared at us the whole time we were there! It was very off putting. I can totally appreciate that one might not come across a baby with a tube coming out of its nose on a daily basis and therefore an inquisitive glance might be required, but this lady sat facing us, rather than with her legs under her table, and stared very obviously at us for the next 45 minutes. When I got up to go the loo she watched me go all the way! Steve thinks we must have been sitting in their seats and she was trying to stare us out. I would quite liked to have stared back but we weren't entirely sure she didn't have a few 'problems' of her own so had to pretend we hadn't noticed we were being watched like a fairground sideshow. We then took a trip to Ikea in Milton Keynes for a few bits and bobs and popped into a specialist car seat shop called the in car safety centre.
Because William can't support his own head he needs to stay in a rear facing car seat as long as possible. In this country most children are moved to a forward facing car seat at around 8 months-1 year so finding a rear facing seat that will last William a lot longer is tricky. The in car safety centre imports car seats from Europe where they have quite a different approach to car travel. In Scandanavia it is usual for a child to stay rear facing until they are at least 4. If you need any proof of this you can visit the Britax (popular car seat manufacturer) website. Once a baby reaches 9kg they move into a Group 1 car seat which can last till they are about 5/6. On the British Britax site all group 1 car seats are forward facing, whereas on the Swedish Britax site all their Group 1 seats are rearward facing. "Why is this?", I hear you ask. Well let me get on my soap box and tell you...
Before I needed to look into this I would have quite happily gone out and bought a forward facing car seat for any healthy child I might have and not have given it a second thought because in this country that's the culture. How many children older than 4 do you know who travel rear facing? Probably not many or more likely none. I have since discovered that safety conscious Sweden keep their children facing the back of the car for as long as possible because it is much safer, five times safer than travelling facing the front. In fact it's safer for all children and adults to travel rear facing, but this isn't possible of course because eventually your legs are going to be in the way. I found it insane that even though it is much safer to travel rear facing I didn't know! Why don't the car seat people tell us this! I could rage and rage on this subject for a long time, but I won't. If you're interested in finding out more about this look at http://www.rearfacing.co.uk/ which I've found very useful. Anyway, we've decided to get William the Britax Two Way Elite which we will order once he's a bit bigger.
Yesterday William took his first trip to Toys R Us to do a spot of birthday present shopping! We are on the lookout at the moment for a high chair that will work for William that we can transport more easily than his sunbeam chair and that we can keep and his nana and grandpa's. We found a chair in Toys R Us which seemed perfect for him so we're going back at the weekend to show it to daddy. It's very exciting when we find 'normal' baby things that will work for William. Most toys in the shop would be completely useless for him because he probably can't see them and can't interact with anything so we spent lots of time looking at the percussion instruments and the sound making books.
As a final, slightly amusing note, this afternoon I came across a web forum where parents of children with special needs had written in with some of the silly things people have said to them about their child. I think it's true with most, if not all of us (myself included) that when we meet someone with a disability or that is different to us in some way, we often don't know what to say because we're so worried we might upset them or that we'll put our foot in it. I find in general people either say something silly or they try and be encouraging or they ask you lots of questions. Personally I like it when people ask me questions and show a genuine interest in William, I don't mind people asking me anything and there's very little you could ask that would upset me. I like to be able to give people an insight into a world I had very little knowledge of before I had William. However every now and then you get one of the other two types of comment. Here are some examples from the forum I found that I can empathise with...
NB. Please don't read this worrying if you've said something like this to us! If you'd said anything to offend me I'd have told you there and then! It's just meant to make you laugh a bit (as they did Steve and I) and make us all think about what we say in general. Sometimes we think we're being nice, but actually there are more helpful ways to be nice and encouraging! These comments below we not written by me so they're not about anyone I know!
Silly Comments:
· The first time I was coming home on the bus after a hosp appt with my son, having shown the driver his bus pass he gets for having a disability. Near the end of the route some rowdy teenage boys got out of the emergency door and ran off shouting abuse to the driver. The driver looked at me and my son and said "yours will be like that one day". I replied "I doubt it, I'll be lucky if my boy learns to speak at all" and she said "think yourself lucky".
· "..its such a shame - he is such a handsome boy". Presumeably if your child is disabled and ugly that is no biggy.
· Old Man: 'why is he in a buggy' [points to my son aged 3 in a double buggy with my daughter]
Me: because he is disabled
Old Man: whats wrong with him?
Me: he has cerebral palsy
Old man: whats that
Me: he has brain damage
Old Man: well he can't very brain damaged if he gets you to push him about
Trying to be nice but not actually very helpful Comments:
· A friend when I told her about my daughter's autism : "She might be really good at numbers and things -you know, like that 'Rainman' "
· 'but he looks normal'
· 'wow he looks so normal, you really wouldn't know'
· "Your son was sent to you because you are special, and only special people can look after disabled children."
· When we first got my daughter’s wheelchair we had a spate of people suggesting that she’d be playing wheelchair basketball or competing in the Paralympics next. Yes because all wheelchair users are natural born athletes.
 |
| Having a lunch time snooze |
Oh and on Friday William is finally being fitted for his chair! Yay!
Monday, 9 May 2011
Chicken Pox Scare!
For those of you not on facebook, you'll have missed today's chicken pox scare! Last night we spotted three small red spots on William's torso, but they weren't really consistent with chicken pox. Then this morning he had a couple more and one of the new ones looked more chicken pox-ish. So off William and I trundled to the GP's to get it checked out. She wasn't sure either though and agreed that one of the spots looked more suspect than the others, so then with Steve in tow too, off we all trundled to the hospital. All sounds a bit dramatic for the pox but due to him being considered immuno-suppressed still we have to be cautious because if it was chicken pox he would need to be given IV immunoglobulin. Thankfully within ten minutes of us getting there a doctor we know and like saw us and said straight away she didn't think it was. Plus he didnt seem unwell, didnt have a temperature and hadnt knowingly been into contact with anyone with it. We then got back home in time for lunch!
He has another new spot now, but the others seem to be fading and the suspiscious one has definitely died down a bit. Who knows what it is! On returning from the hospital, William decided to spend the whole afternoon smiling and laughing. He had a play in the ball pool which he loved. Here's a video of him laughing. I'll upload some ball pool photos later!
He has another new spot now, but the others seem to be fading and the suspiscious one has definitely died down a bit. Who knows what it is! On returning from the hospital, William decided to spend the whole afternoon smiling and laughing. He had a play in the ball pool which he loved. Here's a video of him laughing. I'll upload some ball pool photos later!
Saturday, 7 May 2011
Saturday 7th May 2011
Hello! As you can probably guess from my lack of a rant, we managed to successfully take William on his first holiday with no major hiccups! On the day of the royal wedding we enjoyed the wedding at home then travelled up to the Peak District in the afternoon for 5 days with all the grandparents, aunty ang and 2 dogs. William's fits had stopped the day I last wrote on the blog and are still stopped! He has a couple of minor spasms each day but hasn't had any of the blinky fits which is good. He obviously just loves that phenobarb!
We had a lovely holiday in a lovely barn on an alpaca farm. We would definitely recommend it if you're looking for somewhere to go in that area of the world (http://farbrookcottages.com/Overbrook/index.aspx). We did lots of walking and for the first time we were able to successfully use William's carrier without him flopping around too much in it! We also managed to carry out a bit of hillside tube feeding! Click on this link to see the rest of the holiday photos
http://www.facebook.com/media/set/?set=a.978817436848.2564102.199702150&l=dc76312f9f.
The only William problem we had while away was that he started being a bit sick again. Thankfully it was just once a day though. Since we've been back we have been to see the gastroenterologist and paediatric surgeon at Addenbrookes. There was the option that they could carry out an operation to tighten the entrance to William's stomach to stop him being sick but they don't think his reflux is quite bad enough at the moment to warrant this operation so we'll just see how we go with that. However the operation to have his PEG fitted is all going through. On the 20th May we have to go for an X-Ray at Addenbrookes where they will put some coloured dye down William's mouth to check his stomach is the right way round. So long as it is we should get a date to go for his PEG fitting operation shortly after. This operation will involve him having a general anaesthetic so it is not without a risk, especially for a child like William. The operation involves
the surgeon putting a camera with a bright light on the end down his throat into his tummy. They can then see the light shining through his skin and that shows them where to insert a needle into his tummy. They then pass the PEG tube down through his mouth through the needle and out so you end up with something like in the picture I found. The operation takes about 10 minutes but he'll be away from us for about an hour. This type of tube can not come out accidentally as it's so securely fitted and will last about 1-3 years. After this time we can decide whether to have the same type of tube fitted again under general anaesthetic again or we can choose to have a button fitted which is a bit different but will effectively do the same thing. The difference with a button is that it needs changing every three months and can come out accidentally but Steve and I would be able to change it ourselves so no anaesthetic needed. The operation has to be carried out at Addenbrookes because they have consultant paediatric anaesthetists there. He will need to stay overnight there for a night or two. In general the PEG tube will hopefully be much better than the NG tube he currently has - it can't be pulled out, we don't need to check it's in the right place before we feed him and his face will be free!
The only William problem we had while away was that he started being a bit sick again. Thankfully it was just once a day though. Since we've been back we have been to see the gastroenterologist and paediatric surgeon at Addenbrookes. There was the option that they could carry out an operation to tighten the entrance to William's stomach to stop him being sick but they don't think his reflux is quite bad enough at the moment to warrant this operation so we'll just see how we go with that. However the operation to have his PEG fitted is all going through. On the 20th May we have to go for an X-Ray at Addenbrookes where they will put some coloured dye down William's mouth to check his stomach is the right way round. So long as it is we should get a date to go for his PEG fitting operation shortly after. This operation will involve him having a general anaesthetic so it is not without a risk, especially for a child like William. The operation involves
the surgeon putting a camera with a bright light on the end down his throat into his tummy. They can then see the light shining through his skin and that shows them where to insert a needle into his tummy. They then pass the PEG tube down through his mouth through the needle and out so you end up with something like in the picture I found. The operation takes about 10 minutes but he'll be away from us for about an hour. This type of tube can not come out accidentally as it's so securely fitted and will last about 1-3 years. After this time we can decide whether to have the same type of tube fitted again under general anaesthetic again or we can choose to have a button fitted which is a bit different but will effectively do the same thing. The difference with a button is that it needs changing every three months and can come out accidentally but Steve and I would be able to change it ourselves so no anaesthetic needed. The operation has to be carried out at Addenbrookes because they have consultant paediatric anaesthetists there. He will need to stay overnight there for a night or two. In general the PEG tube will hopefully be much better than the NG tube he currently has - it can't be pulled out, we don't need to check it's in the right place before we feed him and his face will be free!William has continued to put weight on well, in fact a little too well! He is now over 17lb and has jumped up above the 50th centile. His length however has remained just above the 9th centile so the dietitian has asked us to decrease his feeds to try and stabilise his weight. This is good for us because it means his feeds won't take as long and we can feed him four times a day instead of five if we want to.
William's chair has also finally arrived! Unfortunately it's not set up for William to fit in yet and we need to wait for the OT to come and set it up for us. Once it's up and running I'll post some pictures of him in it.
We've got a busy couple of weeks coming up appointment wise. In the next couple of weeks have the following appointments;
- Meeting the nutrition nurse who is bringing round a feeding pump to demonstrate to see if we want one. We're quite excited about this.
- Meeting the OT, Physio and rep from the chair company to get the chair correctly set up
- Eye clinic
- Appointment with the consultant
- X-Ray at Addenbrookes before operation
William has been really smiley and laughy again lately. He still seems to laugh at nothing but I think he's starting to show tiny signs of smiling in response to us. We'll see how this goes...I keep trying to catch a picture of him smiling but he's so camera shy! Here's a smile from a bit ago.
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