Finally got round to updating!

It's been a while and I know some of you (Michelle ;-)) have been waiting patiently for the next installment of the blog!

Since we last wrote we've been pretty busy with Activ8 planning days, appointments, home visits and thankfully William has had a pretty good two weeks so I don't have my ususal just-got-home-from-hospital time slot for blog writing!

I don't want to go on for too long because a lot has happened. I'll write a few bullet points of the main things that have happened, but the main reason I wanted to write is because this Thursday William is scheduled to have his gastrostomy so I wanted to ask you to pray that he would stay well for it and that he would cope well with the operation. We have to arrive at the hospital very early on Thursday morning and wait till his operation. As he has been quite unwell recently they are planning on putting him onto paediatric intensive care (PICU) or high dependency (HDU) for monitoring over night after the operation. If all goes to plan we will hopefully be home Friday evening. We have met with a consultant from PICU last week who discussed possible scenarios with us. The biggest risk is, because William can have problems with his chest, he may have trouble breathing on his own again after being intubated for the operation. We just have to wait and see.
We feel pretty calm about it all and are looking forward to (hopefully) getting the PEG in and the NG tube out!

Here's a run down of some of the recent things that have been going on:

• We visisted Milton hospice for a tour round. It's a great facility and we are now just waiting to see if we've been approved to use the service. If we are we will then be assessed for how much respite we are entitled to.
• William has his pre-op x-ray and assessment at Addenbrookes so we've been over there a few times. All went well with them.
• He's had another EEG - we don't know what this has shown but is more for the consultant anyway to monitor his epilepsy.
• We have had vistits from the physio and OT who have bought William some wedges/supports to use in his bed to keep him in a good sleeping position. They have also delivered him a support system called the Squiggles (photos to follow). Check it out at http://www.leckey.com/products/squiggles-early-activity-system/ if you're interested. We've only had it a few days but we love it!
• We've had an assessment carried out by the continuing care nursing team from the hospital. Their assessment will now go to the panel to decide whether we are entitled to receive their services. This would involve a nurse coming to our home to look after William for a few hours - like a really fancy baby sitter!
• William was very well behaved for the Activ8 planning day two weeks ago. We had a great day with most the team coming to our house for lots of planning and socialising. Activ8 is just under 4 weeks away now so please pray William would be well enough to go - we would so love to have him there with us.
• William was also well enough last weekend that we were able to attend most of our Church's weekend away (down the road!) We had a really lovely weekend and it was great to be able to go to something and not worry about William's health. It's been one of the first things like this we've been able to attend for a while.
• Next week, Steve and I and some friends are due to go and see Take That in london. Please pray William would be well so we can leave him with his nans. We really want to go! And by we I mean me, but I won't enjoy it as much if Steve can't go! (Although Steve's stand in is an excellent second candidate!)
• William's new car seat is here! Hurray! He looks super good in it. We decided to go for the Britax two way elite - and we've been able to fit it in the front of the car which is great for when I'm driving him on my own. So far we would deffo reccomend it!

In general William has had a relatively good two and a half weeks. He had a cold the other weekend which we were a bit worried about but we sat it out at home and he got through it well. He's struggling a bit at the moment with a lack of pooing but a bit of constipation is nothing compared to most things we put up with! His fits have generally been not too bad. He's had a couple of afternoons/mornings where they've got bad but they have always settled back down after a sleep or just randomly. The other week he had a lot one evening and didn't settle off to sleep properly. The next morning he was awake early having them every couple of minutes for an hour or so. I gave him his morning feed and was prepared to give him a dose of Medazolam but once I started feeding him he settled back off to sleep and the fits just stopped and didnt start up again that day! So far we've not had to give any medazolam at home which is amazing and a bit of a shock. Just when you think you understand the pattern of his fits, they totally change and act in a new way. At the moment they seem to come and go, some days he has hardly any, some days he has a few and some bits of days he has lots, but generally they're not too bad.

I've been able to meet up with some friends in the last two weeks and my family has been over a couple of times which has been good. It's been good to have a bit of normality.

One thing I've been thinking about today...have you ever seen a severely disabled person, maybe just walked past them in the street. And have you ever thought to yourself how they just look totally spaced out, like they're not aware of anything going on, like there's nothing going on inside their head. Well if you've met William he probably has come across like that to you on at least one occasion. He often seems very tired and unresponsive compared to other children his age. But I have come to realise that although Williams reactions are very different to another childs his age there is lots going on. I know when hes tired/feeling unwell/contented etc because he communicates these things. You just have to know what to look for and you see him in a different way. It's really made me think about how I think of other people who have as severe a neuro disability as William. My assessment of them as unthinking spaced out people is probably rarely true, I just don't know them well enough to see what's going on and what they're communicating.

it's a hard life...

If you've not seen William's latest black and white photos click here

http://www.facebook.com/media/set/?set=a.1001010596578.2573377.199702150&l=a4848b94b1

 

That's all for now I think. We're a bit hooked into Season 5 of 24 at the moment and we're just about to watch another episode! Will try and update this week again post operation. Will try not to leave it so long next time, but generally no news is good news!

 

Quite a week

A lot has happened since my last post. We realised we weren't leaving the hopsital any time soon while they kept giving him oxygen over night when his sats dropped so we decided that he should only be given oxygen if he really really needed it. This meant we finally left hopsital again on Saturday lunch time. However after a lovely Saturday afternoon at a birthday party, things started to go down hill again on Sunday.

Sunday afternoon he had four fits within an hour where he went quite grey but then no more in the evening. However Monday morning he was having more and for about two hours they were every ten minutes so we took him back to hospital. Once there he stopped having them and only had one in the 4 hours we were there so we came home. However once home he started up again and was fitting every ten-ish minutes again. Meanwhile on monday Steve had come down with a nasty tummy bug and was stuck in bed feeling terrible. Thankfully William went off to sleep ok that night but by Tuesday he was fitting every 5-10 minutes throughout the day so we spoke to his doctor on the phone several times and she agreed we would try increasing his phenobarb dose that evening. We tried to sit it out at home but in the evening he was really sick and Steve and I couldn't take watching him any longer so I took him to the hospital. Unfortunately because Steve had had the tummy bug he wasn't allowed to go to the hospital until Wednesday evening so Steve's mum came with me. It had already been decided earlier in the day that if we ended up taking him in they would try giving him a dose of buccal midazolam. This is an emergency rescue medicine used when an epilepsy sufferer has a very prolonged fit or has lots of fits close together without recovering properly inbetween. It acts very quickly and basically stops the fits and makes you sleepy. Some children can react badly to it and stop breathing but it was given to William on Tuesday night and he seemed fine. He went off to sleep for a good while and William's lovely kind nanna offered to stay with him overnight so Steve and I could be together at home after a very difficult few weeks and a horrible day. The Midazolam is only a temporary measure and for someone like William will not stop the fits for any length of time. Therefore the next day they started again and since then have continued to be very regular, often 5-10 minutes apart. Last night he was given another dose of midazolam as the fits were stopping him from getting to sleep.

We have only come home from hospital today. Following his readmission we have had several long chats with William's consultant, the registrar involved with his care and one of the sisters on the ward. We have disucssed at length the fact that William's fits have now pretty much become uncontrollable. He is on the strongest medicines available and they are becoming less effective. Phenobarb is the only drug which ever made a really significant difference and that has now lost much of it's power. His consultant advised that he has a particularly severe case of Lissencephaly and epilepsy in infancy. Therefore although there are other drugs we can try, she believes they are not going to help. She is also particulaly concerned that he is having fits involving breath holding and dropping oxygen levels. Although these are all presently self rectifying, if they get worse they pose a big danger to his life. She has now made it clear that based on William's progress his condition is life limiting. She advised that there is a real possibility William won't live to his first birthday but he may live a few more years. Realistically, although she is unable to give any certainty, I don't think she expects him to live more than a couple more years max. His fits currently are unlikely to kill him. If the fits in which he drops his oxygen levels become worse then they could but at the moment he is most at risk from dying of a chest infection due to his poor muscle tone and inability to clear his own mucus.

We have therefore had many discussions regarding William's ongoing care and how much intervention we wish to have should he get into serious problems, considering that William will be very severly disabled and most likely be very prone to getting serious infections. Everyone involved in his care has been informed of the discussions we have had. Although we are now home William is no better. He is still regularly fitting and struggles to sleep. We therefore now have a supply of midazolam at home which we are allowed to give him no more than once every 12 hours. This is not how this medicine would usually be used but William has exceptionally bad epilepsy that is now defying all other medicines. We are still going to try a new drug starting next week once he has weaned off his Epilim, called Keppra but I don't think anyone has much hope that it will make any significant long term difference.

While the hospital have made it clear that we are always 'welcome' there if we have any concerns the reality is that we need to find a way of coping at home watching William fit very frequently throughout the day. We have therefore now been referred to a local children's hospice and the hospital's continuing care nursing team. They will both carry out assessments to consider our needs but we will almost definitely be entitled to respite care at the hospice.

Although this all sounds very sad, in a sense this has all come as a relief. The past few weeks have been very hard with the amount of hospital stays William has needed. The hospice has come at the right time for us and will provide much needed emotional support. Also, we have turned a corner in the way we view William's treatment. We feel we are no longer trying to control his fits, we have lost that battle. Instead we are now trying to make him as comfortable as possible, make the most of how ever much time we have left and enjoy every little smile because they will likely become few and far between as the fits become worse. The hospice will draw up a list of hopes and wishes which will be things we want to do with William while he is still here which will be good.

We are perhaps about to emabark on the most difficult part of this journey as we struggle watching William fit day after day. It's going to be flippin hard, it already has been. We've cried a lot of tears already, we fear how the end will come and we're scared that this could go on for a few years yet.

Please pray for us, that we would still have good times with him, and that this next leg of the journey will be as peaceful as possible x

Today has been a bit of a boring day. Not a lot has happened apart from William having his heart monitor taken off. He can't leave the hospital till he has 24hrs off oxygen. He was doing well today but seems to have trouble when hes sleeping keeping his oxygen levels at an ok level. We're hoping to meet with the community nurses tomorrow to discuss the option of having home oxygen because hopefully that will shorten our hospital stays. They can be reluctant to give you home oxygen and monitors because they worry you won't take the child to hospital when they need it beause you can cope longer at home but me and Steve know William and the system well enough now to know when we need to be in hospital. We'll see what they think and say and take it from there. I think everyone agrees that we're spending more and more time in hospital and we need a more sustainable option so hopefully we can figure something out. I'm pretty sure Steve and I should be made honoury nurses after this!

Spending as much time as you do on the ward you really start to get to know the nurses and some of the doctors. It often feels like a strange little community on the ward with people coming and going all the time. We do of course have our favourite nurses and doctors and they make our stays so much better.We are so incredibly grateful for having such an amazing ward to go to.

This afternoon Steve and I got a bit of time at home together while nana and grandpa watched William, and we went for a romantic KFC! It was nice to do something together and to do something 'normal'.

I had a really good chat with the ward play specialist this morning. She bought William a swing chair to try out and said we could bring in his high chair seat so he could spend some time sitting up rather than just lying in his cot and on us. She also helps us to know where we can get good toys for William and can bring stuff out to our home to try. She is hoping to take us on a music therapy day at a local hospice later this year which would be great. She's really nice and it was really lovely watching her interact with William. She obvisouly has a lot of experience working with all different types of children and she knew exactly what to do with him and was very sensitive asking how best to interact with him and William seemed to respond to her, she definitely got a smile and some noises from him. Watching him with her and watching someone interact with him with so much confidence and joy made me well up with pride and brought good tears to me eyes. William might not do a lot but any thing he does do is so precious to us. Yesterday I propped him on his side in his hospital cot to play. He usually lies really still when on his side but for some reason yesterday he seemed to enjoy it and kept giggling. Also when he gets sleepy he often lies with his arm in the air as if he wants someone to hold his hand so we do and we stroke it to help him go to sleep. And yesterday he had his arm in the air and i put my mouth against his hand so he could feel me talking to hin and kissing it and he kept grabbing my lips. I'm pretty certain all of these things are unintentional but they are small ways of him interacting with his environment and each of those things he does is spectacular. He also got told yesterday by the ear nose and throat doctor that he had cheeks to die for! And we figured he would know considering how many cheeks he must look at.

I also found out today, William certainly didn't inherit my lack of patience. The ward was very busy today with people coming in for day surgery. At lunch time William was trying to go for a nap but it was so noisy he was having a bit of trouble nodding off. Every now and then he would nod off only to be woken again by someone doing something nearby. While I got more and more frustrated that the poor little boy couldn't get to sleep thanks to the billion people buzzing round the bay, he just took it all in his stride, didn't complain once and eventually just nodded off, and then slept for about four hours!

So we'll just wait and see what tomorrow brings and hope we get some better solutions so we can come home and stay home!

Today Willam had a heart ultrasound to check the blue episodes weren't heart related. All seems well still there. He's currenty wearing a 24hr heart monitor to record whats going on but they don't expect to find anything. The doctor talked about giving us a stethoscope to go home with so we can listen to his heart when he goes blue to see if it slows or goes quicker. We'll see.
He also saw the Ear Nose and Throat surgeron because he's so snotty all the time. He said he is producing too much snot and has prescribed some nasal drops. If it doesnt improve then when William has the PEG op he'll ask the surgeon to check out his throat area then while he's under and look for anything untoward.

Also saw our consultant. We are going to wean him off Epilim as we don't think it ever made much difference and she wants to introduce a new drug called keppra and they only like to have him on three anti-convulsants at once otherwise it's hard to know which are making a difference. If that doesn't work we can try a drug called topiramate and if that doesnt work we'll try a ketogenic diet. William is not a candidate for epilepsy surgery, which I already knew, because his whole brain is messed up so they can't remove the dodgy bit because the whole thing is dodgy. Apparently some peple have half their brain removed. Our main aim at the moment is to control his fits that make him de-sat. His consultant mentioned that if it turns out that the major episode he had last week was a fit (which we'll only know if he does it a few more times) then "we shall need to have a different type of conversation". I'm presuming this will involve discussing supplying us with emergency seizure medicine or something. I don't know. It will definitely involve talking about the fact that its very dangerous if he makes a habit of it.

He is still in hospital because he still needs a bit of oxygen when he's sleeping. The nurses talked a little today about whether we might end up with home oxygen to use while he's sleeping if he doesn't pick up.

We also found out tonight that someone who was in our bay yesterday has subsequently come down with chicken pox so William is at risk because they shared nurses. He's had a blood test tonight to check for antibodies in his blood which will show if he's had chicken pox which is very very unlikely. Otherwise he'll have another course of aciclovir starting next week.

We've had lots of kind messages offering help but there is nothing anyone can do to help. William doesn't need a babysitter, he needs a fairly well trained carer. While we don't have this Steve and I have to stay apart at night, I have to face arriving home every night to an empty house and we can never really do anything without William. We are scared to leave the area, go on holiday or even leave William while we go very far. I've pretty much come to the conclusion that the only way to continue is to accept that I have no life. Whenever I've been in a really difficult situation before I've been able to end it. I dropped out of university twice, I've ended relationships that weren't working, but this is the first thing I've faced that I have no way out of. Life with William is a constant string of disappointments, cancelled plans, hopsital visit after hospital visit. Therefore if I have no expectation of life there can be no disappointment. I feel like I need to resign myself to a life of nothing in order to care for William. I wish we knew how long this would go on for. If we knew William would be like this for years to come we would move and live by the hospital, but there's no point in doing that if he stabilises within a couple of years or dies.

So anyway, life still stinks. William is still lovely and has the most beautiful smile (which I've been treated to lots today) but I won't say anything cliched about his smile making it all worth it because I'm not sure it always does. We love him with all our hearts but we will often wish we had a time machine.