Medication Trial
About a week ago we were asked to go to the hospital for 24 hours about a week ago to try Liam’s first type of medication. The doctor wanted to observe him to make sure he was cared for if he didn’t respond to the medication. We started the night off pretty good. We got in there in the afternoon and early that evening he got his first dose. Within a couple hours Liam was not acting like himself. He was lethargic, whiny and weak. I could tell something was wrong. Sure enough by morning he had a fever that kept rising to 103, which with his disease it is dangerous for him to have a high fever like that because it puts too much strain on his lungs. It is equivalent to someone who is running a marathon. We did a ton of tests and procedures to see what it could be from, I swear, even to this day, that it was the medication, but that kind of reaction is “unheard of” so the doctors refused to consider that.
While we waited for the fever to break we did another sedated echo, it showed that in the 3 weeks since he had his last echo his condition has declined. This was a big wake up call for me that we can no longer plan to stay in Utah until Spring. We need to get him to the care he needs sooner.
We ended up staying an extra 24 hours to make sure his fever would go away and that it wasn’t from a virus. We also tried a second medication, which Liam turned out to tolerate ok. It is a little sad that Liam didn’t respond to that first type of medication because it rules out a whole type of medications that could have helped him in a noninvasive way. But he seems to be tolerating this new type of medication, we will know in about a month whether it is helping him or not.
Needless to say we got a glimpse of the kind of care and treatments he will be undergoing during the next few months. It was extremely sobering for me to realize yet again how our lives are and will completely change. I was emotionally and physically drained and more than anything I just wanted to take all of this from Liam. But despite everything he was brave and strong during all of it; he truly is my hero. Once we got home we were able to relax a little, Liam was a but agitated and it took several long days and nights for him to get used to the medication, but he is doing magnificent. We went in today and Liam had an echo that showed no improvement, but it also didn’t show that he is any worse. We are hopeful that this new medication is slowing down his condition and will help give us some more time. We will continue to administer this medication until we can see if it is making a difference (another couple weeks). While we were in the doctors appointment today I had to laugh {somewhat hysterically}, the doctor asked if Abigail had been checked out. I thought, “no…there was never a reason”, well he listened to her and wanted to do an EKG to be safe. There was about a 15 minute wait for the EKG nurse to come where I thought, “I don’t think I can handle both of my children being sick”. It was a sickening and very scary thought for me. Luckily her EKG came back normal and she is completely healthy.
Ultimately with Liam it is a waiting game, we will find out little bits along the way, but we don’t know how it will end. We are cherishing every moment with our kids and trying to enjoy every moment of every day, no matter how hard or tiring those moments are. We are just trying to take the good with the bad and enjoy what time we are given.
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