I thought I was coming out of my blogging hiatus but my disappearing act yet again proves otherwise. There is so much I always want to tell you about what Samuel has been up to, but finding the focus to properly sit down and type it out is another matter.
Despite the odd hiccup (like Samuel being taken by ambulance to hospital recently due to over sedation & the odd visit from the nice, friendly paramedics), oh and Sam’s current chest infection, things are going OK. We are plodding along as usual. There still feels so much to do before the end of the year and before Samuel’s little brother arrives, but I’m
sure hoping it will all come together in time.
The most important thing to tick off the list for this year though is Samuel’s birthday. My boy, my brave, cuddly, beautiful boy will be turning 3. Make sure that you all do something extra special on Sunday 10 November. For us it will be a day of love, cuddles and feeling proud and thankful…I can’t wait.
Here are just a few things that have been keeping us busy recently:
The Midazolam effect
Samuel has been on Midazolam for a very long time. Almost since the beginning in fact. It’s given to him as his emergency medicine when he has had a seizure lasting longer than 10 minutes or a cluster of 4 in 30 minutes (and when I say seizure I mean a focal seizure, not his twitches & jerks). We have a monitor at home that measures his heart rate and saturation levels (oxygen in the blood) which we put Sam on when he’s had this medicine, but at the encouragement of his doctor we would only do spot checks, not leave Samuel on the monitor for a prelonged period. But then we started to do so, leave him on the monitor after Midazolam and the monitor started to show that his SAT levels dropped significantly while he was under Midazolam sedation. Although the first rule is always treat the patient not the monitor, it was hard to ignore what the numbers were saying. So reluctantly the doctor issued us with a perscription of oxygen. So we now have one big 15l cyclinder and four small ones lurking about the place for when he needs it. And he’s needed it. It’s become part of his protocol now that Samuel has oxygen after Midazolam – although to reassure Dr H (in case he’s stumbled over this blog), we always pay attention to what Samuel looks like, his colour & breathing, rather than just focus on what the numbers say. Treat the patient not the monitor. It was disappointing having to have oxygen in the house as we’ve got away without it for so long. But our primary concern, our priority in fact, is Samuel’s comfort, so we won’t complain about it.
I mentioned before that we were looking to wean Samuel off Clobazam. It is a medicine he has been on for a while, it is a strong medicine and a sister drug to Midazolam, Samuel’s ‘emergency’ medicine. The doctors were concerned about the two medicines conflicting with each other and adding to the over sedation effect of Midazolam. So we started a slow wean off. But it backfired. It was clear when we had got half way through the wean off that Clobazam was an effective medicine for Samuel. We were really struggling on the low dose. Samuel was really struggling. So we decided to reverse the wean and go back to the original dose of 5.5mls and I think we will be sticking with Clobazam for a quite a while.
So Sam fans who’ve followed this blog for a while will now the saga of the Ketogenic Diet. We started it over a year ago in the hope it will help Samuel’s epilepsy. Well he was on it for over a year and while there were the odd times that we thought it was working and helping, it wasn’t consistent at all and it had quite an adverse effect on Samuel’s bowels and weight. So we all agreed to come off the diet. And this week he did. We are no longer on the Ketogenic Diet. It is really sad that it didn’t work for Samuel but the important rule to follow is do no harm, so it was best all round for him to come off it.
After a lot of paperwork flying around and assessments, on Tuesday 3 December, Samuel will be starting school! I can’t tell you how wonderful the school is that he will be going to – it’s absolutely perfect for Sam. He will be going for three days, which will include a weekly hydrotherapy session which Samuel will love. It will also mean that most of the professionals who work with Sam – physiotherapist, occupational therapist, child development doctor, dietician, speech and language therapist (who works with children on communication) plus the wheelchair service, orthotics team etc, will see Samuel while at school – so I won’t have to shlep him around to different hospital appointments. But besides all that the school is simply amazing and provides excellent medical support, so even though I am hugely nervous about it all, I know that once I leave him there, he will be well looked after. There was honestly a time when we couldn’t consider school for Samuel. We didn’t think he’d still be here to be able to go. I cannot tell you how proud we are of him.
See you later alligator….