Does sarcasm come through in text? I don’t think it does. We have been battling Cody’s AI since
Sunday. Today was the last straw so we
took him to the hospital. He has not
been responding to his medicine to get caught back up. The doctor asked us to go to get some blood
work done. He also intimated that is was
maybe, possibly, could be a good idea to go ahead and go to the ER. I say it this way because he didn’t really
feel like Cody was in a life threatening state but he knew what it was going to
take to get him back to normal. He said
this may speed the process up of healing.
He wanted to run a panel to see if his electrolytes, magnesium and
several other things may be off. If that
was the case, then and IV of fluids may fix the issue. IF not then well…. wait he didn’t say “if not”
but I think I know what he was trying to do.
We took Cody to the ER.
It was busy. It was really busy. We checked him in at the front desk. The lady at the desk took our information and
looked at our son and asked “what is wrong with him?” So my wife said “Cody has Adrenal Insufficiency,
and he can’t seem to get back to normal.
He tired, foggy, unable to get going and out of bed.” The ever so nice lady at the desk looked at
my wife and said, “I don’t need a diagnosis I need to know what is wrong with
him.” Umm we just told you what was wrong with him and included his diagnosis. I was surprised at the restraint my lovely
wife had while she explained again what is wrong with my son. Which makes me wonder if a diabetic was
having issues would they ever tell the diabetic “we don’t need a diagnosis”,
even though they explained what was wrong.
Either way we got checked in.
We waited for about 45 minutes for the triage nurse to check
his stats and get us in the real line. Did
I mention there were a lot of people there?
Being it was lunch time and we didn’t really have a plan in place or an
idea of how long it would be I ran to get us some lunch. We ate in the hallway. I mean who wants to eat in a waiting room? At least the hallway felt a little better. We finished up and waited for our turn in
line. I think we picked the busiest day
in the history of the hospital. After
about two and a half hours we got called back.
They brought us in to the room and Cody got on the bed. The nurse went through all the formalities
and we discussed what was going on. We
explained our endocrine doctor wanted a specific blood panel run and go from
there. The nurse took Cody’s vitals again
and left to talk to the ER doctor. A
little while later the ER doctor came in and talked to us. We also explained to her that our doctor
ordered a blood panel and told the story for what seemed to be the millionth
time today. The nurse looked up the
order in their system and started a line in his arm. The nurse was super nice. She talked to Cody the whole time and
explained to us that she would make it an IV line in case the blood work came
back and they needed to do an IV or something else. She wouldn’t need to stick him with a needle
twice. I had never had a nurse think
that far in advance to not stick him twice.
The nurse took his blood in those tiny vials away and we
waited for the next step. The doctor came
in to discuss that she had talked to our endocrine doctor. She was up to speed to now; she knew what our
doctor was trying to accomplish. Find
out if he is out of balance. If not, get
him the meds he needs. Needless to say
we waited again for the results to come back.
As a side note to the story I need to share a moment I think
my poor son has never needed to do. They
asked him for a urine sample and I am not sure he’s ever had to do it until
now. So I accompanied him into the
bathroom and explained how to “partially fill the cup” and then finish peeing in
the toilet. I gave him the cup and
turned around so he could take care of business. He stood there a few seconds and didn’t start
peeing. I assumed it was because he was
having some stage freight issues because I was in the bathroom with him. Seconds passed and then all the sudden my son
passed gas. That’s right while he was
trying to start peeing he farted on me standing behind him. He started giggling and said “dad I don’t
need to go.” So I said “but you felt the
need to fart on me.” I told him grandpa would
be proud. We both started giggling like
the child he is and I am still. I had to
take a moment or two to compose us both and we walked back in the room. No one was the wiser as to what just
happened, but I explained we needed a glass of water to “help” him go.
Back to the story, a little time went by when they sent in a
radiology tech to do a sonogram on his abdomen.
Cody experiences abdominal pain when he is in crisis. Most endocrine doctors understand this is a symptom
of his disease and we know it is a tell for us to know he is not feeling
well. Much like the color change in his
face, the blackening and bags under his eyes, or his inability to function. However, the ER doctor not knowing exactly
how to treat an AI patient has to rule other possible problems. So they ordered a sonogram and they didn’t
find anything other than he had a good lunch.
They checked his kidneys, stomach, gall bladder, and bladder. The tech did mention she saw some fluid in
his bladder so he was free to go fill that cup again when she was done. She left the room when she finished and my
son smiled at me and said he could handle filling the cup on his own this time.
We’d been there about 5 hours now. The tests have all come back. Everything looks good and his stats were
fine. So I am thinking what now, but the
plan our endocrine doctor had this whole time finally showed itself. The ER doctor explained that since everything
else was fine they would proceed with a large dose (100mg) of liquid hydrocortisone
(solu-cortef) in that IV line and he’d be ready to go home. Wait that is it? Give him a big does and send him home? Shouldn’t
we wait to see if it works? The doctor
explained that within 15 minutes of a liquid dose of this size will bring him
back to normal. The doctor explained she
recently had another AI patient that couldn’t walk because they were so “down”
and this dose brought them back to normal within 20 minutes.
Already this evening since that dose he is feeling better,
dare I say, back to normal. His color is
back, he had energy to do some homework, his smile and lift in his face is
back, and he actually spent time with his sister in her room while they watched
a movie together. These are all signs of
normal.
So what did we learn?
We learned that our “emergency shot” that we carry with us everywhere
probably should have been used Sunday night or Monday morning. He was at his worst point that night and
barely alive. Yes, I used the words
barely alive. We were, at that point,
dosing him as if it was a major crisis by giving him triple his normal dose,
but by Monday morning he still wasn’t bouncing back. This shouldn’t happen. Tripling his dose should bring him out if he
is not too far behind, but in this case he was too far behind. We have an injection we can give him just
like the hospital did, but we still worry about using it. His emergency shot
(100mg solu-cortef) is nearly 10 times his normal daily dose and just over 3
times a tripe dose. We were talking to
the doctor the whole time and he never suggested we use it. What is confusing and concerning is it took
three and a half days of tripling his dose for the doctor to decide to do an
emergency size dose while we were in the ER.
Could we have done this Sunday night or Monday morning and solved the
problem 2 or 3 days sooner? Could we
have been out of this and back to life on Monday and not Wednesday? The only thing is the big if is when we do
the shot we have to call 911 as a part of the protocol, so it is difficult to
say he needed it at the time but looking back he could have used it for sure.
These are all questions and discussion points we now have
for the doctor. I will be giving the
doctor a progress report tomorrow over lunch and just for safety we will have
Cody miss one more day of school or go half a day. We are very happy he seems to be back to “normal”. There’s that word again. How do we get to normal? We’ve made it through another bad time with
some answers but many more questions.
