Partially because I'm a level of exhausted I didn't know was humanly possible. I'm one of those people who is too busy to remember to answer text messages or to eat sitting down. I've always hated those people. They make me feel unimportant. At the moment I don't know how to not be one of those people. I'm working on it...
And partially because amid the chaos my shattered mind is working on piecing together what it thinks about some really intense stuff that I'm not willing to sit down and write about yet. Usually when my hands start flying across a keyboard I can't suppress the tumult. I usually don't want to... but this one is too divisive and hurts too much. I'm just not ready.
So... not much writing coming from over here in busy, crazy land.
This morning I am at a coffee shop trying to study for the oral portion of my comprehensive exams. If you don't know what that means you are a blessed individual. Suffice it to say it's the biggest, most terrifying exam of my life. And I CAN NOT focus. See above with the busy and the exhausted...
So what's up with us beyond my mind's constant efforts to keep me as far off-track as possible?
The rainbow had his fourth IV infusion of gamma globulin yesterday. I write a little about his condition here. It is always horrible. The child is only a few days this side of three years old and he has been poked more times than anyone should ever have to endure. Yesterday was worse.
Long story short, our insurance emphatically denied our claim for his medication. Rather than continuing to fight that battle our immunologist worked with our pediatrician to find a way to help us pay for his first three infusions so that he could be enrolled in a clinical trial that will pay for his meds (this stuff is wicked expensive). So, he had to reach a stable point in IV infused medication before he could switch to the clinical trial, which will allow his medication to be delivered subcutaneously (under the skin, NO IVs!!!).
For the past three months, once a month, he has suffered through the insertion of an IV, hours of infusion, then days of side effects post infusion. Drawing blood on a pediatric patient is difficult, threading an IV is... I don't even know... whole lots more difficult.
We are incredibly fortunate that his immunologist is pretty emphatic about being in control of her patient's health. She has an infusion center in her office. She, and her staff, are on hand throughout the process. He isn't infused at a specialty pharmacy or an infusion center that just plugs and chuggs. He sees his doctor or his PA every single visit. This is apparently quite rare and, holy frick balls, I'm grateful.
The sole downside to this is that his immunologist is not pediatric specifically, therefore, her office does not have pediatric nurses. There is ONE person in the office who can thread his IV (she's amazing by the way). By rainbow's last IV she could hit and thread his IV in one try, which is miraculous. Not this time kids...
Enter back story...
This amazing bright light of a child has endured a host of medical treatments and tests since roughly 30 seconds after birth. He was premature and spent the first month of his life in the NICU, intubations, IVs, wires, UV blankets, alarms... then another month at home on oral caffeine (so his brain wouldn't forget to tell him to breathe) and a bradycardia monitor strapped to his chest (so an alarm would go off incase his brain forgot to tell him to breathe). At ten months old we found out that, as we had feared, his immunoglobulin levels were low. So began blood draws for testing every three months and constant antibiotics, interspersed with flying visits to the E.R. anytime he ran a fever, more sticks, more blood work... A visit to the Mayo Clinic... more sticks, more blood work.
Then, roughly four months ago came the news... this is for real... this isn't transient. He is immunodeficient.
You guessed it.. more sticks, more bloodwork... and now, IVs
All that to say this kid is so very D.O.N.E. and I don't even kind of blame him for a second. He's not even pretending to be patient with our needles anymore. He starts screaming and kicking almost as soon as he sees gloves.
Annnnnnd... a little over a week ago he broke his collar bone.
Freaking out three year old with a broken bone that can't be casted who has to have blood drawn then an IV inserted...
Ugh, is anyone still with me at this point?? So this is where we are. Yesterday we suffered through SEVEN needle sticks. SEVEN!! In. One. Day.
No kid should have to endure what this child endures... none.
Oh, and did I mention the migraines? Yeah, those too because just wtf?
We have pushed through the last four months of horrors to get to next week. Next Thursday he will have his first subcutaneous infusion. This means that he will NOT have to have an IV. He will have to have blood drawn, which really sucks, a lot, but no IV. No more IVs for at least 6 months. I think that is the only thing keeping me from completely and utterly just fricking losing my mind.
I think I'm supposed to write some nice, pretty conclusion where I say something positive and leave you all feeling great about your lives but I just don't have the energy. If you guys have any to spare send some our way. Feeling stupid levels of done.
Until next time...
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