Monday 4th June 2012

I've been so rubbish at keeping the blog up-to-date in the last few months, but I'm trying to be better at it! So i've written a new blog post here and published one I wrote a while ago (below). So you might want to start with the previous post then come back to this one so you read them in chronoloigcal order!


Since I wrote the last post, things have changed a lot again!


The first thing is that William has finally had his operation! After the first failed attempt we were rescheduled to go in on 12th April. Unfortunately William came down with a chest infection a week and a half before the date and didn't pick up quickly enough to go for the operation. He was on IV antibiotics and IV fluids for a few days but thankfully it wasn't too serious and he didn't need any oxygen support. He was very miserable with it though!


After cancelling that date we were then given another date of 31st May (last Thursday). We were all prepared for the surgery again, expecting to be in hospital for at least a week. In my last post I wrote that I'd been struggling with some anxiety. Thankfully I have an amazing GP who's been sorting me out and I've been getting on a lot better in the last couple of months, getting out more and feeling more relaxed when out. On the day of the surgery we left home at 6.45am and although we were of course both quite anxious, over the course of the half hour journey to the hospital I became more and more unsettled. By the time we pulled up in the hospital car park I was experiencing what I can only presume was some sort of panic attack. It was horrible and I could not get a grip of myself enough to bring myself to get out the car. I was so anxious the operation would get cancelled last minute (particularly as we knew we were 4th on the surgery list) and I had an overwhelming fear that William wasn't going to survive the operation.


Steve called the ward we were expected on and explained the situation. They were very understanding and allowed Steve to drive me home. We then agreed Steve should return with William to the hospital in the hope the surgery would happen this time. I sat it out at home and my friend Rach came to occupy me for a bit. Steve went back to the hospital with his mum to keep him company. To our huge relief at 4:00pm they took William down to surgery as intensive care had spare beds this time! At half 5 I plucked up the courage to go back to the hospital with Steve's dad and we arrived on the ward at 6 to find Steve on his way to theatre recovery as they had bleeped him. We were quite worried why they were calling us so soon as we were expecting the operation to take 3-4 hours, rather than 2. However on arriving in recovery we met the surgeon who said the surgery had gone as well as it could have. It had been performed laparoscopically and they had managed to change Williams PEG to a button meaning he would need no further surgery to replace it in the future. We were so happy! We then had to wait 45 minutes while they tranferred him to intensive care to recover. We had not been able to see him at all up to this point so it was a scary wait. Eventually we were called up and amazingly William was already on HDU having not needed to be taken to PICU. He was already off his ventiliator with just an oxygen mask on his face and he was stirring. We were so happy that everything had gone so well, so relieved that this black cloud had gone, the surgery was over and William was ok!


We spent a total of 3 nights in hospital, much less than we expected to. It was still a difficult time as I was still getting mild feelings of panic (I think that hospital is just so big and overwhelming!). Thankfully I have an AMAZING husband who stayed at the hospital, was understanding of me and my crazyness and cared for William without once complaining. 


We are used to spending a lot of time in our local hospital where generally William is often one of the more complex patients. Being in a large specialist hopsital was a different story and we saw many babies sicker than William. One family sticks in our minds more than anyone else though, they were in HDU with us and about a week previous to our encounter their 10 month old beautiful little girl had been diagnosed with a cancerous brain tumour following 3 weeks of vomitting and then sudden onset seizures. They were still unsure whether it could be treated or how it would be treated. They were obviously in shock. You know when you see really poorly children and their families on TV and it's sad, well this was something else. They were real, normal people sharing our room, they could have been anyone. They could have been us, or someone we know. This weekend as the country has celebrated I've thought a lot about them, as their lives have been thrown into chaos. I don't know what my point is or why I wanted to talk about them, I guess I just wanted to say pray for them, think about them, and be forever happy when your children, family and friends are ok.


William is now back home and doing well. We've had no sickness yet since surgery! He still coughs a bit dramatically to try and clear his secretions but there's now less fear we're about to see all his lunch. One of the effects of the surgery is that William can no longer burp or bring wind up through his mouth. He is currently attached 24/7 to a Farrell Valve to vent air from his tummy. This is a bit of a pain, it's like being constantly attached to a drip which needs to be held above your head. Hopefully he'll be able to be weaned off this in the coming months but we're not sure it's helping much anyway!


I talked in my last blog about our experiences at play groups. Since I wrote that we have attended a couple of new 'special needs' playgroups. It's been a good experience and I've been able to meet another mum whose son has epilepsy. It's very different to William's epilepsy but it's still good to share stories. I still find that, apart from at the hospice playgroup we attend once a month, William is always the most disabled child there. I brought this up with William's consultant who said it's because his brain condition affects his whole brain, so he is effected a lot! He's not always the most medically complicated child (especially compared to many of the children at the hospice) but he is very disabled. Sometimes it's really difficult to be in that situation but I think think it's good to think about it in another way...William might be the most disabled but his brain is completely broken. How amazing is it then in light of that, that he smiles, that in his own way he recognises the voices of those he knows best and that he's starting to learn to roll to his right and is mighty proud of himself for it too! I think for someone with his brain that's mighty impressive.


A couple of weeks ago we were invited to attend Dreamnight at Colchester Zoo with the hospice. This is an event where the zoo opens from 6pm-9pm and invites only families from 5 local childrens hospices. We went along with Williams friend Freya and her lovely parents Natalie and Ben. We had a really lovely evening getting to see some animals really close up. For those not on facebook here's a link to the photos:

https://www.facebook.com/media/set/?set=a.10100435863385078.2642816.199702150&type=3&l=ee76ed9347. It was great to not feel like the odd one out, to wonder around and not feel like we were being looked at and to be there with so many families who understood what life is like with a child with a serious medical condition. Natalie and I spent the evening spotting different medical equipment that people had with them!

I've said enough for tonight, but have so much more I'll write about soon. Again, for those not on facebook here's some photos we took of William recently:

https://www.facebook.com/media/set/?set=a.10100435947995518.2642856.199702150&type=3&l=3054961387. Enjoy his beautiful smile!

Friday 23rd March

I wrote this blog back on the 23rd March (it's now the 4th June) but never published it. When I wrote it I was angry so wouldn't let myself publish it, so I've now sensored it and published it!

Now we've finally moved house and got the internet up and running I thought it was about time I updated the blog as so much has happened in the last 2 months.

Last time I wrote I said that William had started being very sick again. This didn't stop and since then we could count on one hand the number of days he's not been sick. It's been up and down, some days he throws up one feed, some days he throws up over half of what we give him. This has resulted in a lot of worry about his fluid intake. Eventually after a fair amount of nagging from me we got a referral to Addenbrookes to see the surgeon about William having a Nissens Fundoplication. If the operation was a success it would stop him being sick and mean he could come off his reflux medicines. We'd be able to feed him quicker and move around freely with him while he was feeding.

We met with the surgeon a few weeks ago who was a bit reluctant to operate given William's other medical problems but he eventually agreed following a little exagerating from me. This particular meeting did not go very well, mostly because the surgeon doesn't have a very good bedside manner. He wanted us to see an intensive care respiratory doctor before he would agree to operate. Therefore a couple of weeks ago we met with another doctor at Addenbrookes who was lovely and had worked with children like William a lot. He said given Williams medical conditions, his chest was in good shape and he thought the operation was worth carrying out. He said he thought William had a 95% chance of coming off the ventilators straight away after surgery, and only a 1-2% chance of needing ventilating for a week or more. He explained that once a child has had to stay on a ventilator for a week and is showing no signs of taking over their breathing again, that is when you would start to look at other options. This would range from turning off the ventilator and acknowledging there's nothing more that can be done, giving the child a tracheostomy or trying to agressively wean them off the ventilator. Thankfully there was a slim chance we would reach this situation so we were still happy to proceed.

Out of the blue a week last Wednesday we were told we had a slot for surgery last Monday, it was a cancellation, hence the short notice. We were nervous but so pleased it had come through. Since January we've barely left the house and it was so good to think we might finally get our lives back. On monday we arrived at Addenbrookes at 7.20am with all our bags ready for a week or so there. We were seen by the anaesthetist, surgeons registrar and William had blood taken so they could confirm his blood type in case he needed a transfusion during the operation. We then waited as we were third on the list. At 3pm a junior doctor came to inform us that the intensive care bed reserved for when William came out of theatre had gone (presumably due to an emergency) and the surgeon could threfore not operate. We went home very upset. Having spent the last few days as nervous wrecks the prospect of going through it all again was awful. We are currently waiting for a new surgery date. This morning Steve spoke to the surgeons secretary who advised we're currently booked in for early May. However there may be another cancellation slot coming up so we're waiting to hear back from her again.

While all this has been unpleasant in itself the knock on effects have been unexpected and probably the worst part. As a result of his sickness we've not been able to do much with William. We put off seeing the physio for a while as we simply couldnt afford to move him. We have little freedom with what we do with him because our whole day is based around feeding and then sitting still to make sure he's not sick. While William is showing little signs of becoming more aware in his responses, physically he's making no progress.

As I mentioned earlier we've not been able to go out much this year. Not only is it a big hassle if William is sick while out and about, it's also embarassing because he literally seems to be choking, but more than anything our priority has to be to keep as much water and food in him as possible to keep him well. Most the time keeping him still is the best way to achieve this so we can't afford to move him. So you can imagine, when you spend most your time stuck inside with a baby who sicks up most of what you give them, when you start every day cleaning a lot of sick out of a cot, when you can't play with that baby as you want to, when you barely see anyone, life gets very challening. In the past several weeks I've started struggling a lot with anxiety type feelings to the point that I'm finding it really hard to go out. Steve has to come home and deal with an often very fed up Helen.

On top of this we've had struggles with church and moved house and it's all made for a difficult few months. However there have been a couple of really good things going on too...

I have a friend from university, Rachel, who lives about half an hour away and she has been such a star over the last few months that I don't know what I'd have done without her. When William was born she explained to her boss about William and us and he/she agreed that Rachel could take every Tuesday afternoon off to come and see us. This is when William has respite so we often just sit and chat or go for a drink. She often cooks us dinner when shes here and most of all she comes even when I feel like rubbish and don't want to do anything and she doesn't mind. I'm so thankful for her and for her being there when we felt very alone and for sticking with us even when we're not very fun people to be around.

We've also made friends with a local couple who have a daughter with a diagnosis very different to William's but who is also tube fed. As families we've faced a lot of very similar things and it's been really great to meet a family who we get on with but can also share our experiences with. William and their little girl are so adorable together and it's really nice for William to have a friend more on his ability level. We've been able to share experiences and help each other out, and I am so grateful we have met.

Finally, I wanted to write about what prompted me to write on here today. This morning William and I went to the 'special needs' toddler group we go to most Fridays. I decided to walk there. This might sound like no big deal but for someone who doesn't go out much, whose baby is likely to projectile vomit at any moment and who is struggling with anxiety type feelings, it felt like a big achievement and I was proud of myself. The group starts with an hours free play, then snack time, then a circle time with singing. 90% of the time when we go William falls asleep during snack time and misses the singing because he's worn out and because he often naps around then. A few weeks ago a few comments were made about trying to help William stay awake for the whole session and then this morning it was suggested that perhaps I take William along later in the hope that he would have less stimulation before he got there and would then be awake for circle time. The ladies who lead the group who suggested it were trying to help and work out a solution that would be best for William and I totally realise this and am not angry at them. However the conversation ended up having a totally different effect on me.

William sleeps generally well at night so long as hes not sick or fitting, however he naps as and when he wants in the day. I've spent a long time worrying about him not being in a better routine with his naps but have come to the conclusion that there is too much against us to have more of a routine and he sleeps well at night which is enough. Many families with children with additional needs struggle to ever get a decent nights sleep. His sleepiness will depend on his seizure activty, his medicines and how active he's been in the day which depends largely on how sick he's been. His bedtime varies due to his sickness, but you could put him to bed at 6 and he'll go stright asleep, or you could put him to bed at 6 and he'll lie happily awake for four hours. How is a child with severe neurological problems supposed to understand rules about when to sleep and when not to when many healthy children sturggle with it. Despite all this reasoning I still feel like a bad mother for not having my child in a structured sleep routine. Therefore when comments like today's are made I find it hard not to take it personally.

Add to this the fact that I'm struggling with the fact that William is obvisouly the least able, most severely disabled child in the group and the fact that the group is the only thing I regularly attend, I was left feeling very excluded. I go to that group mostly for me, Williams barely aware where we are but I need to do something. As much as I know they did nothing wrong and were just trying to help, I can't help but feel like I'm being excluded from something which should be for people like us. It's like William is too disabled to be involved. I know this isnt the case at all though.