Drugs, drugs, drugs!
At first, the thought of taking Thomas home and being responsible for administering his medications was quite scary. He had spent a total of 7 weeks in NICU and I’d become used to the idea of NICU nurses taking care of this side of things. I was responsible for feeding him and CARES and that was pretty much it. So I was thankful when they weaned him off his anti convulsant while he was in NICU so that he could be closely monitored in a safe environment. The idea of weaning him off it at home was frightening so one less drug was a relief.
This is just the morning lot of meds alone!
Fast forward a few months and now preparing and administering drugs is a regular part of our routine. In fact, that’s usually how I start my mornings. Thomas wakes for his morning feed, nappy change and medications. He’s usually very good at taking his meds but as he progresses he is showing a distinct awareness of which ones he prefers (the sweet tasting ones of course!) and the ones he does not prefer whatsoever (mashed up pills mixed with water or expressed milk). We are now starting to see him try to spit it or gag it.
Medication is very much a big part of our daily routine with me trying to ensure that it is prepared and administered routinely.I have become so used to it and it isn’t until a new drug is introduced that I get a little anxious. The anxiety for me is ensuring I give the correct amount and whether there are going to be side effects or interactions with other drugs. Side effects are an unfortunate thing but I’ve found that sometimes you have very little choice.
Most recently, we have delved into using a range of sedatives such as Midazolam, Melatonin (blimey expensive non-subsidised!) and Chloral Hydrate. These, to me, are the scariest because, well, they sedate my wee man. Midazolam is now only used when Thomas has a seizure (infantile spasm seizure) lasting longer than 10 minutes. Melatonin was used to help Thomas drift off to sleep due to the sleep deprivation side effect of the Prednisone. Unfortunately, he would sleep from 20 minutes to 2 hours so it was not so good at ensuring Thomas remained asleep for an appropriate length of time so we moved onto something much, much stronger.Enter Chloral Hydrate. He needed to be hospitalised while they trialed dosage amounts and to ensure that he was monitored as Chloral Hydrate can slow the breathing down a little. Thomas responded well to the sedative and so we were able to take a little home to see him through for the week. Unfortunately, you can build an immunity to it so that story ended quickly. Thankfully, Thomas finished the Prednisone treatment and is now sleeping much better as you already know as per my last post. 🙂
Big picture wise, for us, at the moment, it is about managing Thomas’ seizures so that they do not cause him discomfort, anxiety or further cognitive delays/regressions. We want to make sure Thomas is comfortable and happy.
Thomas working hard.
Minding Thomas 