Today was fun.

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.