the newest rage with toddlers
Cincy here we come
Tomorrow morning, my husband and I head
out with Ike-a-saurus on an epic journey across five states (which has absolutely ruined any potentiality of downloading the
Roadside America app, because they charge $3 per chunk of US for their
maps and we are crossing three of those chunks and I am cheap).
With some extra
help from my brother-in-law as a third driver, we're hoping to make
good time on our way to Cincinnati.
90 suction catheters
54 boxes of Boost Kids Essential 1.5 (vanilla flavor, mmm)
lots and lots of tubing
200 saline bullets (will that be enough?)
piles of gauze
suction machine canisters
one million billion other things
All of it goes in the car in the morning. For most of the week, we thought we were taking all of that stuff on an airplane, but then Texas Medicaid booked us on a carrier with no oxygen service for passengers (even though I told Texas Medicaid about 100,000 times Ike might need his Os on the plane), and then we weren't able to find anyone who could get us a pediatric portable oxygen concentrator in time for the flight, or under $800. SO. Flights were canceled and now we're driving. We're grateful that Medicaid helps out with these trips, but they sure don't make it easy.
I'm trying to shake off all the onhold misery of this week and focus on everything to come….
Next week is filled with tests and evaluations. And by next Friday
(or possibly the Monday after that) we will know whether the doctors
can perform a laryngotracheoplasty with an anterior graft on our sweet
Ike-a-saurus. If they can, it could mean a true repair of his airway
and no more trach. This has been a hard fought trip – keeping Ike
well, trying to get him fat, keeping appointments scheduled, making
the appropriate ritual sacrifices to appease Texas Medicaid….
So I am asking you – begging you, really – to send out whatever
light you can towards Isaac next week. Good wishes, prayers, mantras,
love, unicorn farts, whatever you can do. The most critical times are 8
am on Tuesday when he will go under general anesthesia for a chest CT,
and on Wednesday at 9:15 when he will again go under general anesthesia
for a flexible and rigid bronchcoscopy, endoscopy and
microlaryngoscopy. These procedures are critical for showing the
doctors what they need to see in order to know if they can repair
Isaac's airway. Please say a little something that his lungs are
healthy and show no signs of bronchiectasis or chronic lung disease.
And while we're making a list of things, please add to your little
something that please, please everything in Ike's airway looks healthy,
normal (or as normal as we can get), non-swollen, non-irritated, and less stenos-i-fied than last time.
Thank you so much for always being there for me to gripe to, whine to, beg, and bother. We have a very long week ahead of us….
Love and rainbows and candy bars and shiny new tracheas,