As the weekend is ending, I am feeling both exhausted and energized.
Let’s start with Friday… in general it was a very stressful morning. Our home health interview, paperwork, and initial appointment lasted over 3 hours. During which I struggled with how to draw a very very very expensive to replace gel medicine without compromising its quality and required temperature. In the process I unknowingly dulled a needle (rookie mistake…I know), and felt horrible about how Landon’s injection went. Lucky for Nolan I learned a lesson from that. Unlucky for Nolan his blood sugar machine needed some tweaking, so he had multiple pokes at varying depths before we had a success. Despite the torture, Nolan’s blood pressure was so elusive that neither of us could hear it. I ended up driving in to the facility that afternoon and after 3 nurses tried, they finally thought they heard enough to feel confident about the reading.
I had to move our medical records again. For the first time in this journey someone essentially admitted we were too much for them. The doctor I had chosen locally to be our family doctor, including the well baby pediatric care for the boys, received a call from Children’s for our home going instructions and one week check up…and decided we should probably be seen somewhere else after all. I don’t blame them. I completely understand in fact. Sometimes this is too much for me. But no one has ever admitted it before. I’ve had family, friends, and coworkers bend over backwards to help. I’ve had two day cares go out of their way to accommodate us. I’ve had strangers reach out to help us…and mean it. But for the first time someone thought it over and said no to the boys. I know I’m overreacting, and I’m thankful they were honest, but for some reason that also made me sad. There will be plenty of times in their future where the world says “no” “too much” or “not here”. And I’ll learn to toughen up about it. But I’ll probably also hate it a little every time too.
We had a quick trip to day care where we discussed how to lower their germ exposure, and thankfully determined Ms D will help with blood pressure checks at lunch time. Followed by a trip to Walmart to gather miscellaneous supplies to help us get set up properly. By evening, we were back to feeling somewhat optimistic.
Their meds list is long, and changes every few days as we are tapering off of Trileptal. But it’s easy enough to do. The injections are getting easier. The entire process is getting smoother. What took an hour Saturday morning was down to about 30 minutes today. We will have our first run without a nurse observing tomorrow morning, and are back to feeling confident. Who knows…maybe we’ll even make it to work on time!
In other news, the boys do not seem agitated or irritable yet. Both are eating well and sleeping well. And…dare I say it…I think we are seeing fewer spasms. I don’t know how long it should take to be effective, or if I just happen to have missed seeing them today, but I can only recall one from Landon, (not even a cluster) and none from Nolan. I have such hope that this will work. And while the daily routine for the next 6 weeks will in some ways make me feel less like a mom, and more like a nurse, I will always say “yes”, “more” and “here with me” when it comes to my boys.
Not pictured…ACTH injections
Today, instead of prayer requests, I’d like to relay a few things we are thankful for.
1) A very very expensive medicine was available to us, and through private insurance and a donor sponsored copay assistance plan, at a cost of $0.
2) I continue to believe the Children’s Hospital we have chosen is a good place for us. The neurologists call me directly, talk openly with me, and we are in the process of building a great working relationship.
3) I mentioned we were told to find a different local physician. Children’s helped me call around and multiple names were thrown out. But we landed on a Dr who already has one patient with seizures who is treated at Children’s. They understand the dynamic and the information flow. A bonus I could not have anticipated.
4) The boys are amazing troopers.
5) Maybe, just maybe, these medicines are starting to work on the dreaded infantile spasms.
6) Strength for today, and bright hope for tomorrow.