Saturday mornings are great for thinking. I brew a pot of coffee and enjoy the quiet while most everyone is still asleep. To be honest, the only reason I got up so early (5 am) is because someone decided to kick his oximeter probe off his big toe. We listened to music for awhile, snuggled, and even did some dancing in the kitchen. :)
Of course that was before the vomit and the suctioning, which has become a pretty regular thing. But we live for those tender moments between medical needs. Since then it's been more suctioning, dressing, bathing, giving meds, venting the tube, monitoring vitals, and trying to figure out the best course of action. Add in a splash of looking at old pictures and researching mitochondrial disease and treatments and you get the full picture.
Have you ever felt like you're at the top of the rollercoaster just waiting for that last click before the plunge? That's kind of what it feels like with our little guy.
No stool- click
Coughing- click
Elevated heart rate- click
Low O2 Sat- click
Vomiting or posttussis emeisis- click
Hiccups- click
Increased myoclonic movements- click
Fever- click
No nap / too sleepy- click
It is hard to live your life constantly on watch, on edge, and for Lennon to constantly be on a monitor or feeding tube. October was hard for all of his caregivers. Even the ones who are paid to do the aforementioned things. We are not able to determine why he is having such difficulty lately.
Next week we have four appointments in two days.
Seating clinic- fitting him for a wheelchair or stroller
Neurologist- check levels and adjust medications
Cardiologist- address elevated heart rate and the implications of seizure/stroke events on his heart
Pulmonologist- address the retractions and concerns of aspiration with more frequent vomiting
This still leaves us with questions about his digestive system.
We could really use some good news or at least some definitive (or evidence based) answers. It is increasingly difficult to hear "we don't know why" from our specialists, even though it is true. Knowing what to anticipate with Lennon's health would make it much easier to address the bigger questions that have been weighing heavily upon us.
In April they asked us some really difficult questions, and now our providers are continuing to push us to make drastic changes. We also feel the pull from family to consider a change of scenery. Honestly, if we can't come up with a better plan for managing Lennon's health and keeping him well, we have to be closer to medical providers who can treat him quickly and effectively.
Yes, I think moving is a good idea. No, I do not want to go anywhere. I am afraid of making the wrong decision, of putting undue stress on the Lennon and ending up in another hospital stay, of uprooting our entire family, of giving us temporary relief with long-term negative consequences. And then there's the consideration of time... because I'm pretty sure we are past the "if necessary" and to the point of "when are we doing this?" But how long do we wait to see if he does better or to start applying for jobs and housing in a new place? How do we even decide where, much less when?
7 hours of coffee, research, and care later... I still don't have the anwers.
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