An O thing

So, we spent the last week in hospital. ‘What?‘ You say. ‘I didn’t know about that‘. Well reader I would have written a little post if I could have done (mainly to relieve my boredom) but the signal was so bad that my phone was rubbish! Anyway, I digress…

At 8pm on Tuesday we had to give Samuel his emergency medicine Midazolam as he was clustering and we couldn’t wait for his evening medicines to kick in (which we had just given him). After having Midazolam, Samuel often has quite an elaborate wind down with lots of fussing and this time it was no different but he then started to cough up A LOT of phlegm.

Once he’d calmed down and was sedated his breathing started to very quickly become quite laboured and exaggerated and he was flaring his nostrils. We checked his SATs and they were quite poor. So we packed him up and took him into hospital.

As soon as he was in hospital he was put on oxygen and hooked up to a saturation monitor and you could see the  instant benefit of the oxygen.

To cut a long story short, they think he might have had a virus which had caused the breathing problems. He started off on 90% oxygen but quite soon we were able to start weaning him off. He was initially given an oxygen mask, then he was put in an oxygen box (which looked like a little greenhouse), then as he was taken out of the box and given nasal prongs.

While in hospital, Samuel’s epilepsy was very bad. Not sure if that was just a coincidence or something to do with the virus (he was also a bit constipated which may have contributed). He had several doses of Midazolam and we had to grit our teeth and hope this wasn’t the start of something else.

It was also frustrating that Samuel’s brilliant paedetrician, who is the one person at the hospital who knows and understands everything about Samuel (as much as that is possible), was on holiday, but the nurses were brilliant and I think the other doctors are starting to get the hang of our little tricky customer.

As hospital stays go, it wasn’t too bad. We could see that as far as the virus was concerned he was getting better. His seizures did calm down and he didn’t have any emergency medicine yesterday (Friday). I also wasn’t alone during our stay. Although Samuel’s Dad had to go to work, two of my lovely Mum-friends from Julia’s House were also in hospital with their children, so we had a chance for a good natter.

We’ve got to see how things go, his breathing is back to normal but he’s still jerky and while I’ve been writing this he’s had a couple of short seizures. It might all be fine or he might end up having some emergency medicine before the end of the day.

Either way it is great to be home.

All we’ve ever known

I’ve been reading more of the #definenormal blog posts which are part of the Define Normal blog hop challenge at Just Bring The Chocolate. I can relate to all of them in some way and to me, they sound all very, well, normal.

And that’s the thing. I’m so used to our little world, our little bubble, that sometimes I struggle to step back and realise what isn’t perhaps the mainstream normal.

It might be because Samuel is our only child. This is our only experience of being parents & having children. This is all we know.

Samuel has always had seizures. Medicines have always been a crucial part of Samuel’s care.

Samuel has never given us eye contact. He has never smiled. Never laughed. The only time we see him smile is when he is having a seizure and boy he would have one fantastic cheeky smile. But we’ve never had that so it doesn’t feel strange. But it does make me feel sad.

We get asked if Samuel likes this or likes that. We don’t know. How do you tell if a six week baby likes something? Sam might be 17 months old but is only really like a little baby.

But that is how he has always been. This is our normal.

Believer in hope

We finally have a date for Samuel to go into hospital to start the ketogenic diet. Assuming that he doesn’t suddenly come down with a bug and that there is a bed available, we are booked to go in on 23 April.

If you have not heard of the ketogenic diet, well it is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.

I have butterflies in my stomach. I so want this diet to work. To have a positive effect on Samuel. Even at the very least if it means that he just comes off one medicine, that would be fantastic. But I know for some children it has done so much more and made a huge difference to them. I know of a little girl that belongs to Samuel’s hospice and by a year after she started the diet she had come off all her medicines. The diet has made a huge difference to her in other ways too.

The idea of it having such an impact on Samuel, well I can’t put into words what that would mean to all of us. Could it mean that we come of one/some/all of his medicines? Would it allow him to develop – could he finally reach a milestone? Will he be almost/totally seizure free?

Samuel’s doctor has told us that they give the diet three months to see whether it is working. Some children show an improvement very quickly, while some show a slower response. If after three months sufficient ketones are being maintained but there have been no beneficial changes then the diet is stopped. For Samuel it would mean that the doctors return to the drug book and review the cocktail he is on and possibly take him off one and add a new medicine to our drug box.

I hope with every part of me, I pray, oh goodness do I pray and have everything crossed that this does work for our boy. If this works reader, oh my god, if this works it could change everything.

Please hope and pray with us. Team Sam..x

For more information about the ketogenic diet visit www.matthewsfriends.org

FAQs

I was reading Little Mamma said‘s blog post about being asked questions about her son’s condition – well actually in this case she was asked outright ‘what’s wrong with him?’

I’ve been asked that about Sam. It was worse when he had his NG tube in because that was stuck on his face and impossible not to be seen. Now it is really when we are out and pump feeding him or when people (who we may know a little, or don’t know at all) stop and chat to us and notice something might be a bit different with Samuel.

I  know people don’t mean any harm or offense. We, as humans, are just terribly flawed when it comes to putting our foot in it. We say things without thinking. People essentially do mean well. If you are reading this thinking that you might have asked a daft question, please please don’t worry about it. But I do wonder though whether I should have a list ready of frequently asked questions to give to people before they come out with their questions.

An example could be, in no particular order:

Question/Comment: Gosh, isn’t he a big boy? My cousin has just had a big baby too. (This is said a lot, but it is because I have to hold Samuel as if he was a little baby because he is unable to support his own head and neck)  Answer: No, not really, he’s just right length and weight actually. He was only 6lb 4oz when he was born.

Question/Comment: Was he a premature baby? How early was he? Answer: He was full term, well one week short of being bang on full term.

Question/Comment: What’s that? (Said after spotting him being gastrostomy fed) Answer: He is having a feed via his gastrostomy button, it goes straight into his tummy.

Question/Comment: Oh, how bizarre (looking very confused), can’t he eat normally then? Answer: He hasn’t got a reliable swallow so all his feed and medicines go through his gastrostomy button.

Question/Comment: Was very sorry to hear about your baby. We’ve been thinking about you a lot but didn’t want to get in touch as didn’t want to bother you. Answer: No need to feel sorry for us, we have our child that we’ve always wanted and who we love very much. He has brought so much joy into our lives.

Question/Comment: What’s wrong with him?  Answer: He has a rare condition that affects the brain, causes severe epilepsy and global development delay. (It’s a funny question because with strangers or people I don’t know very well, how much detail do I go into? So I just mention the epilepsy and special needs in the hope that is enough to satisfy interest but not boring or scaring them with more info than perhaps they needed!)

Question/Comment: Will he grow out of it? Answer: No, unfortunately not.

Question/Comment: Would an operation help? Can they cure his condition. Answer: No unfortunately not. Samuel is missing a part of his brain & has lissencephaly which refers to the smoothness of his brain. This cannot be repaired or cured.

Question/Comment: I don’t think he likes me/is interested in what’s going on/he looks bored. (This is normally said when someone tries to interact with Sam, but Sam just ignores them)  Answer: (I’m never quite sure what to say here) He isn’t ignoring you really, he has special needs so doesn’t realise that you are chatting to him.

Question/Comment: I heard you were visiting the hospice. I didn’t realise things were that bad. Answer: There are a lot of unknowns with Sam’s condition, particularly as it is very rare. But we do know that he has a life limiting condition and that not only means that he is extremely limited in what he will be able to do, it does also mean that how long we have to enjoy him is very limited too. The hospice offers us great emotional and practical support and respite. They also have fantastic facilities and are great at looking after children like Samuel.

Question/Comment: So will you be having more children? Or when do you think you’ll start trying again for another one? Answer: Err, it’s not quite that straightforward and Sam is only 15 months so we will take our time.

Question/Comment: Does he sleep ok at night? Do you have to stay up with him all  night? Do you get to sleep? Answer: We are lucky in that Sam has a drug called Chloral Hydrate that helps him sleep at night. Doesn’t guarantee he will sleep straight through but helps him settle and gives him more of a night and day. He’s on a feeding pump for 10 hours overnight so is bound to do a massive wee nappy which can disturb him so often get up to do one nappy at night. Much like a lot of ‘normal’ parents I imagine.

Question/Comment: You are very brave. I don’t think my husband and I could cope with a disabled/special needs child.  Answer: Yes you could, you are a parent, you love your child and would do anything for them. You would move heaven and earth to help them. We are just like any other good parents who love their child.

Question/Comment: Is it ok to give him a cuddle? Do I need to hold him a special way? I wont hurt him will I? Answer: Cuddling Sam is just like cuddling a big baby. Just hold him close and if he has a seizure then just hold him tight.

Question/Comment: Oh is he having a little laugh? Answer: No, unfortunately he’s just about to have a seizure.

Maybe I should just give them a link to my blog post about how damn perfect my boy is.

Other random comments we get:

• Oh my goodness aren’t his eyelashes amazing, why do boys always get stunning eyelashes?!
• You would never tell anything was wrong with him when he is calm. He just looks so perfect.
• My friends step-son has Downs Syndrome.
• Could I have a cuddle with Sam please as I’ve had a stressful day and need a Samuel cuddle to relax me.
• (Stranger looking at him snoozing or calm in his buggy, normally said when we are in a lift) Ah, sometimes you just want to keep them little like that. Enjoy the peace while you can as they grow up quick and will be running around causing havoc in no time. (My dream would be for Sam to be running around causing havoc!)

But one of my favourite things said to me recently by a stranger has to be, ‘I have to tell you that I think your baby is one of the most beautiful little creatures I’ve ever seen’.

If this post sounds all too familier to you, Kate from The life and Times of Team Kitchen blog wrote a great poem called Staring. Pop over and have a nosey.

Morning medicines

Sam’s day begins with a dose of Topiramate, Clobazam and Vigabatrin flushed down with a big syringe of water.