Our trip to Cincinnati Childrens on
Thursday made for a long, exhausting day. But, Colby got all good
reports and that's really what matters. It's almost scary how
amazingly well he has been over the last couple of years. I know I
shouldn't say that – I'll totally jinx it. And let me just say, I
have the sweetest, most tolerant, adorable, bravest kid on the
planet. Seriously, I do. Colby is laid back, goes with the flow,
never seems to get undone about much of anything. Yesterday he was
poked, talked to, talked about, driven 200 miles for no-fun dr
appointments, and moved in and out of his wheelchair. He handled it
all like a champ. Very proud of my sweet boy. Well, I guess I should
say sweet young man, since he'll be turning 16 next month!
First order of business was to get labs
for Colby. We're following him more closely now that he's getting the
Spinraza injections. Since they need to test his coagulation, using
his port for a blood draw is not an option. The heparin sitting in
the port throws off the coagulation. So that means a peripheral stick
for Colby. Sigh. The phlebotomists were fantastic. They accessed
Colby on the first poke. Then started to draw the 10, yes 10, vials
of blood they needed. Colby stopped bleeding after 7, so they poked
him again and were able to get all the samples they needed. Next
stop, on the complete other end of the hospital of course, was a DEXA
scan. Colby gets Zometa infusions to help with his low bone density
issues. So he gets a DEXA scan yearly to see if the Zometa is
working. Getting this done was easy peasy. Check it off the list.
After that was an EKG and Echo down in Cardiology. Also easy testing
for Colby. Then we went up one floor to Pulmonary so they could test
Colby's vent settings. They measure his vent pressures, his leak, and
I don't even know what else. Basically they said we should be putting
more water in Colby's trach cuff. They tell us this
every---single---time---we're up there. And my answer, every single
times, is that Colby is doing fine with the amount of water we
currently have in the cuff. Furthermore, he doesn't like extra water
in the cuff. You can tell by watching him he's uncomfortable with it.
So, until Colby starts having ventilation issues, we ain't fixing
what ain't broke. Then we went back down to the 4th floor
for clinic. After all this testing and running around, it was time
for Colby to actually see a doctor!
In clinic, Colby saw the neurologist,
pulmonologist, cardiologist, nutritionist and rehab doctor. The nice
thing is we stay put in one room, and the docs come in to see us. As
I said, all good reports. Not much to tell really. Colby is scheduled
to get his next Spinraza, insurance pending, in August. We'll be
returning to Cincinnati Childrens to get it done instead of
Louisville. Don't ask. It all has to do with insurance negotiations,
what the company who makes the drug will and won't approve as far as
getting on their free drug program, etc. Basically a bunch of red
tape BS. Pulmonary suggested maybe Colby needs a bigger size trach.
Maybe. He's never been upsized in the 4 years he's had his trach.
We'll address that next month at Colby's ENT visit. Colby has never
had cardiac issues of any sort. The cardiologist said we can mark
them off the list. Colby doesn't need to be followed by them unless
specific problems arise. Yay! We're more than happy to do that.
Colby's weight is fine. The nutritionist didn't make any changes to
his formula recipe. And I swear in the almost 16 years we've been
going to Cincinnati Childrens, I'm not sure what a rehab doctor does.
She asked if we needed any new equipment, braces, etc. Nope, Colby is
in good shape there. We're working with his PT/OT here in Louisville
to get a new bath chair and neck brace. Arrived at the hospital at
8AM, and at 4PM they said we were free to go. We got in some
Cincinnati traffic heading out of town, and also some traffic getting
back into town on the Watterson. Colby's nurse, Colby and I were all
soooooo tired when we got home. The nurse, bless her heart, worked a
14-hour day. And as I mentioned, Colby was so good all day. Never
complained or acted grumpy one time. Unlike me haha. Colby's next
appointment at Cincinnati is July 10th for ENT and
Endocrinology. This will be an “easy” day for us. Anyone who
knows Colby knows getting him somewhere isn't exactly the easiest
task ever. But having only 2 appointments that day will be a breeze
compared to what we went through Thursday. It's all perspective,
right?
Thank you to everyone who wished us
safe travels and good luck on Thursday. We did it! Another Neurology
clinic over, done and we survived. Time to start working on something
much more fun, like Colby's upcoming birthday! He'll be 16 – how in
the world did this happen? Slow down, time. Please just slow down a
little.
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