Tricky customer

Samuel is going into hospital on Monday as an inpatient to start the ketogenic diet. I like our hospital, well as much as anyone likes a hospital. I’m use to it. We got there a lot for appointments or to pick up something – like tubes or new feed. To me it’s just a building where they treat poorly people. The doctors and nurses I’ve met there are really nice. The nurses always seem to fall in love with Samuel quite quickly and are really kind and gentle with him. Also, we are very lucky that Samuel’s pediatrician is wonderful (I’m a bit of a fan of his).

But I must admit I am nervous about going in next week. Samuel isn’t having any invasive procedures, he’s not going under the knife or being given general anesthetic. But I still am nervous.

I’m nervous because of his seizures. As the pediatrician put it, Samuel has off the scale epilepsy. Doctors and nurses are trained, are programmed, to treat seizure activity when it occurs. But you don’t do that with Samuel. He has seizures every day, so you would be sedating him every day. As I’ve said before, some seizures you just let happen, you cuddle Samuel and hold on for the bumpy ride until he’s settled again. Sometimes he twitches a lot. That is seizure activity. It unnerves doctors.

Last year we had to take Samuel into hospital because of his seizures (Better late than never). The doctor was a really nice guy. But I almost had to wrestle the emergency seizure medicine off him. We were having a rest in the parents room when the nurse called us to say that they might have to medicate Sam. As we approached the cot the doctor was prepping Samuel’s canula to give him some intravenous medicine. Samuel was twitching. Just twitching. The doctor said that he had seen what Samuel had done the night before (the previous evening was a very rough ride for us all) and said he anticipated that Samuel was about to do the same. I said no. That’s not how we treat his epilepsy. We have to wait and let it become something before we medicate, we don’t medicate just in case (that would mean he’d be medicated every day). I asked the doctor for five minutes more, just give him five minutes. And he did. I got Sam out of his cot and we had a cuddle. The twitches, the ‘seizure activity’ stopped. He settled. Oh yeah, he then went off to sleep.

When we see new doctors, doctors that haven’t met Samuel before, there are always the same questions. Now I know doctors have to ask these questions, it would probably be wrong if they didn’t. But I just find it difficult when the doctors first meet Samuel and are still looking at him through ‘textbook epilepsy’ eyes (I do of course appreciate that there isn’t textbook epilepsy):

• How many seizures does he have in a day?
• You realise that this is seizure activity? (Pointing at the twitchy, jerky movements that I haven’t appeared to acknowledge. But I always know every movement my boy does, I just don’t make a song and dance about it every time)
• What do his other seizures look like?
• How long do they normally go on for?
• Is this normal for Samuel? And this is the question I do like because I respond by very enthusiastically saying ‘YES! This is very normal for Samuel.’

And that’s it, what Samuel does is normal for Samuel. It isn’t normal outside of our bubble, but in his bubble it is what he does. He has an abnormal brain, that is why every EEG he has had has always come back the same. As we always say it ‘abnormal, but normal for Samuel’.

The other thing that although doesn’t annoy me, I do find strange is the enthusiastic wafting around of oxygen. Samuel doesn’t have oxygen at home. We have never had oxygen at home. When we came home from NICU we came home with a barrel full of medicines but no oxygen. It was always felt by the doctors in NICU that oxygen didn’t really help. He’d either come out of the seizure by himself or once we’ve given him emergency medicine. This really surprises people but his body seems to cope. with one type of his seizures, when he first starts, his lips very briefly go blue, but then they return to normal. I do thank our lucky stars every day (yes readers, we are extremely lucky) that Samuel doesn’t need help breathing and know that in the future it might all change. But for now it’s a nice feeling I can tell you, knowing your child can breathe independently and not require help.

So when the nurses say ‘shall we give him some oxygen?’ I always respond with ‘well you are very welcome to but we don’t have it at home’ And they do give him a big old waft of oxygen.

Samuel’s pediatrician, have I mentioned I’m a fan? will be around in the background and he is very in tune with our boy, so I do keep reminding myself of that which makes me feel more relaxed. I know he will do everything he can to ensure that the doctors on shift understand as much as anyone can about the quirks of Samuel and what to do and when. And hopefully the doctors and nurses will quickly learn the mantra of: ‘KEEP CALM AND ASK MUM’

I’m not sure the point of this post. But I think it just confirms that for nurses and doctors, Samuel is most definitely a tricky customer. I probably should get him a t-shirt made with that on!

Guest post: A real yummy cuddle monster

Samuel and I met my dear twitter friend @deborabora for the first time this week and she’s kindly agreed to write a unique guest post. A Samuel cuddle review:

A REAL YUMMY CUDDLE MONSTER by @deborabora

We need 4 hugs a day for survival. We need 8 hugs a day for maintenance. We need 12 hugs a day for growth.
—Virginia Satir, family therapist

And when one of those cuddles is with Samuel, I swear you get your 12 hugs in one.

I’m not forthcoming in requesting cuddles from people’s children. As much as I would like a hug I tend to wait to be asked. I’ve no real idea why but something to do with watching newborns be passed around a million people getting every increasingly grumpy. However, even when I’m the only person in the room and itching for a cuddle, I can’t bring myself to ask. Its silly really.

Anyway, I digress.

From the word go, as soon as I saw a sleeping Samuel, I wanted a cuddle and so when he stirred and the lovely Zoë asked if I wanted a cuddle I jumped at the chance.

As Zoë has said before in her blog posts, you need to support Samuel’s head, so need to hold him like a younger baby. But, unlike a younger baby there is more to Samuel which makes that cuddle a real yummy hug. Like the difference between trying to hug a stick of a person compared to someone who has more meat on them making them, and Samuel, a real cuddle monster.

To top off the gorgeousness of his cuddle he had the most tickle-able toes. I frequently found myself drawn to tickling his little toes.

My only downside is myself. I was nervous…like I am when I hold anyone’s child for the first time. I was stiff and behaving like I’d never held a baby before. Which meant, my arm soon began to ache and I had to give up my cuddle much sooner than I’d have liked. However, having had my first cuddle…I’m addicted and want another! Next time (if I’m allowed a next time of course), I hope I can offer a more enjoyable cuddle to Samuel and remember to relax…I’m not going to break him (I hope), and perhaps I can help him grow a little as he helped me grow a lot.

Join Team Sam!

I’ve been so grateful of all the support I’ve received since joining twitter and starting this blog. It might sound cheesy but I really feel that we are all part of Team Sam.

If you’d like to be an official proud member of Team Sam, all you have to do is grab the badge below and put it on your blog. In return we’ll send you a big Samuel virtual cuddle.

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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.

Early days

Well we’ve had four sessions now at Julia’s House and I do really feel that bringing them into our lives is certainly going to be really positive for us.

For three of those days Samuel slept for most of the day (which he is doing now as I write) so the carers didn’t really have a chance to play with him. One of the sessions he was much more awake, but very unsettled with some bigish seizures thrown in, so we didn’t think he was in the right mood for play time.

But I do think they are getting to know him. The only problem is (and I need to keep reminding myself that it is still early days) that to be able to leave him with them, they need to see and understand which of his seizures we medicate and which we just cuddle him through.

There is a protocol, which is a good protocol, but when it comes down to it, it isn’t helpful for a child like Sam who has a lot of seizures. So the protocol says to medicate when he’s been having a seizure for 10 minutes. The problem is, Samuel has a lot of seizures. When he’s twitching, that is actually a seizure. So there are some things he does that we don’t medicate, that we just have to overlook.

There are some seizures, even though he’d been doing it for several minutes, where I would just scoop him up onto the sofa with me and we’d cuddle for however long he needed. It wasn’t a seizure that particularly would worry me and in fact in our language at home we’d probably say that he was unsettled and having a bit of a fuss.

Apart from leaving him with Auntie C a few times for no longer than a couple of hours, I’ve never left Samuel since he came home from hospital. It has always been his dad or I with him (mainly me). I’ve never had to explain it before in quite such detail. This is different to when I’m discussing Sam’s condition and seizures to his doctors. This is so I can leave him confident that his new carers understand when to get the Midazolam out and when just to give him a good squeeze.

Because Julia’s House are booked up with training over the next couple of weeks, we’ve not got a session again until next month. But I’ve got a plan. With the use of our little video camera, I’m going to film Samuel to show what we do medicate and what we just cuddle through. I think this might help me show the nurses and carers because I have found it really quite difficult to explain and worry that I’ll just never be able to articulate it correctly. But I keep reminding myself, it’s still early days.

They are more than happy for me to stay with Samuel when he has his sessions and I can go off into another room and have a read or a coffee if I want some space. But I like being around the carers and seeing the other children play (I could write a whole post about how adorable the other children are) and watching people chat to Samuel and admire his gorgeousness.

They make me feel normal.

It is so nice to be around people who will chat and cuddle Samuel and aren’t put off by him not obviously reacting to them. They stroke his hand and chat to him about what the weather is like, what the other children are doing, they tell him that they like his shoes and his new jumper. They hold him tightly when he has a seizure and tell him that it will be alright, he will be ok. Very quickly they have become Samuel’s friends.

I know we’ll get there in time. After all, it’s still early days.

 

Related posts:

• Sam’s condition – what is ARX?
• Auntie C
• New chapter
• If you meet Samuel

If you meet Samuel

If you were to meet Samuel, I’d ask just a few things of you.

Whether he is sleeping, awake, or even on his food pump, come over to him and hold his hand. Samuel is good at holding hands. Stroke his hands and look at his beautiful little fingers.

Look into his big beautiful blue eyes and if he’s having a snooze, look at his beautiful long dark eyelashes.

Stroke his hair and feel how soft it is and see what a lovely blonde colour it is.

Talk to him. Tell him about yourself. He may not obviously react to you, but I’m sure he would know you were there. Chat to him.

If you can, give him a cuddle. Scoop him up and bring him into you. Listen to him purr as he leans into you. Feel the warmth of his cuddly little body.

If he has a seizure while he is in your arms, just pull him in closer to you. Let him feel safe and loved. The is the best of all his medicines.

If you get to have a Samuel cuddle, you’ll quickly understand how powerful his cuddles truly are and I promise you, he will touch your heart.

But please don’t look at him with sadness. He is so very loved and I believe in his own way he is a very content and happy little fellow.

 

New chapter

You know the advert where the family have booked a package, all-inclusive foreign holiday and throughout their journey right up to and including arriving at the hotel they are treated like VIPs?

Well I had that feeling today. That lovely fuzzy feeling where everyone is so very pleased you are there and they’ve been really looking forward to meet you.

But we weren’t on holiday, we were at Julia’s House. It was our very first session there this morning and it was wonderful. When we came in all the carers and nurses appeared and said hello and were keen to meet Samuel (and I). I kept hearing, ‘Oh is this the lovely Samuel, can I give him a cuddle?’. The whole morning session was spent with him being cuddled by different people who were all just so lovely.

The place does not at all feel like a hospice. It is very warm and homely and the bedrooms are really cute and cosy. We were given a quick tour and then I was made a lovely cup of tea and sat down with a lady called Pam who will be one of Sam’s carers and we just had a lovely chat about Samuel and our world. I think most if not all of what I said she had heard before which I found very comforting. We also met Ashley who will be another one of Sam’s carers, he was very sweet with him and didn’t seem to mind when Sam farted and burped on him which I thought was a good sign!

There were a couple of other children there (who were very sweet) whose parents weren’t there and I was interested to watch the nurses and carers play and interact with them. They were really kind and made a huge effort to make things fun and interesting.

Even very limited children like Samuel get involved with arts, crafts, baking (!), gardening and all sorts. I’ve been warned that my fridge will soon be covered in pictures made by Samuel. There is a fantastic play lady too who gets really involved and puts together an individual play plan for the child, I just hope that Sam doesn’t sleep through his play dates with her!

It was so nice to see them enjoy Samuel and take pleasure in cuddles with him (his cuddles are fantastic I must say). The lead nurse even said about how cuddles were part of his emergency care plan which she’s not come across before, but thought was fantastic.

I was only there for about three and a half hours but I could hear a little voice in my head say ‘Yes I trust these people, I really do.’

My only reason why I feel that it may take a few sessions before I’m happy to leave him there on his own is because I want to feel that they do completely understand his seizures (as much as anyone can understand his seizures!) and I’m confident that they know when to medicate and when just to cuddle him.

But I can’t explain the feeling I had in my chest as we left.

For quite a while I’ve very much wanted to be part of the Julia’s House community, to meet other parents like us, to be part of a world where we are normal. A world where there isn’t anything we say, or anything that Samuel does that is particularly surprising or unusual. Just normal. Our normal.

But above all, the most important, significant feeling I have is that they will really help us get the best out of Samuel and will definitely be a big part of our world.

This is the start of an exciting new chapter in the adventures of Samuel Luke.