The good and the bad

Every once in a while we think we have things figured out with my son and his disease.  This week was one of those weeks.  If you read my post from Monday you saw we gave him his emergency and I can tell you it helped him but not like we thought it would.  I was actually excited that the doctor had given us the okay to use his shot.  I wasn't excited to give it but the thought of not having to go to the ER is exciting.  No exposure to sick kids.  No hours of waiting.  No explaining to 7 different people what he has and what is wrong.  Best of all no being asked to leave the room so they could ask my son if I or someone in his house is abusing him or anyone else in the house.  This is my favorite part of going to Children's Mercy.  I'll add they don't ask My wife to leave when she goes by herself.  I am going to just leave it at this because I know why they do this but it upsets me they only seem to pull out men when it comes to asking about abuse in the house.  I will gladly leave every time though because I've never laid a hand on my children and never would. So profile the fat scary looking guy all you want, but the grumpy jacket may give away I am just a teddy bear.

Anyway back to Cody.   The shot we did on Monday seemed to help a little but like I said not how we had hoped.  We waited one more day and kept up with his dosing.  On Wednesday, we saw his doctor and he was actually impressed with his growth in height and weight.  Cody is a 1/4" from 5'1" and 103 pounds now.  We discussed Cody's current state and how to proceed.   We, including the doctor, actually believed he was improving.  We finished at the doctor and headed home just in time for rush hour.  We got home and decided we were too tired too cook so we loaded the family up in the car and went to Original Pizza in Blue Springs.  At this point Cody still seemed okay.  We finished dinner and hit a Pokémon stop and headed home.

We arrived home about 6:30 and Cody went to "watch an movie in his room".   About an hour later I went to check in on him and he was sound asleep on his iPad.  Face planted firmly on the screen and headphones on his head.  I tried to remove them without waking him but it was an impossible task.  Since I woke him we gave him his growth hormone shot and sent him back to sleep where he stayed until 9:15 am the next morning.  Prior to him sleeping we talked to his doctor (who was surprised to hear from us) and he said give him quadruple his normal does in the am and if he's not better by 1 or so take him to the hospital for fluids and IV of Solu-cortef.  Anyone not following me on Facebook want to guess what we did at 1 pm today?

That's right we went to the ER.  We got in the car and headed to Children's Mercy hospital.  Low on life, low on energy, low on drive, lethargic, and well just not feeling right it was finally time to go.  This was a fun/learning visit for Cody.  Cody has needed to use his big voice not only to the doctor but to us of late.  We need his input we need to know what is going on to know best how to treat him.  This whole event could have possibly been avoided if he would have spoken up Saturday night when he felt tired, but didn't want to leave his cousin's overnight birthday party.   We could have dosed him higher or maybe taken him home, but the latter he definitely didn't want to do so he told us he was doing fine.  I could see in his face he wasn't doing fine but I try hard to trust his feeling and his words, but also realize he is still a kid who wants to just be a kid.  So he partied on that night on his standard double dose.  Which we know should have been higher.  (Hind sight...seems like there is a saying there.)

The nurses at the ER got the line started as you can see to the right.  Checked his sodium levels and started a bag of fluids and Liquid Hydrocodone.  They had a cool machine doing the pumping and he was feeling better within minutes.  About 10 minutes in I could already see a change in color and in attitude.  He was getting that Murrow sense of humor back.  It took about an hour for the whole thing to run it's course but 30 minutes in the Hydro was all in.  He was almost a normal child again.  It is utterly amazing to see him go from down and out to a live before your very eyes.  The ER Dotor walked in and even said he looked amazing compared to when he walked in.  She said she was going to start his discharge papers because clearly he's better, even though the machine wasn't actually done.  The nurse arrive just in time to un hook him and he was ready to go home.





This is him pre and post medicine.  He was a whole different child.  He stayed up until 10 PM tonight playing video games on the computer and wanted to eat some ice cream we have in the house.  I know this all sound strange but for almost 5 straight days all he wanted to do was sleep, and now he is smiling and acting like the Cody we know.

Our problem is now why didn't the shot work.  Why did it not bring him back in the same way the IV does.  This is our 3rd maybe 4th (i've kind of lost track) crisis in 6 or 7 months.  Last one in September and at Children's they did both Fluid and Hdyro in IV.  The previous in the summer was at St. Luke east and they just did an IV port to do some blood work.  Once the blood work returned normal he was only given they Hydro via IV.

In all cases his sodium and other dehydration numbers were spot on normal so this was solely an Adrenal Event.  But why did giving him Hydro in IV form help but giving the EXACT same dose in the form of a shot in his leg do nothing in comparison to the IV.  I am not trying to minimize, but it was like giving him the shot was like pennies for his collection versus giving him rare 1800 silver dollars with the IV.

Needless to say we are happy to have our son back to normal, but it sure would be nice to get some answers to these questions.  I am a computer programmer I need to do some flow-charting to figure this shit out.  Why do some things wor and some don't and why don't the doctors know when you ask them.   We keep hearing it is a kid by kid basis.  Is that all we have.  Wait and see what helps and act from there.

Step 1 is get Cody to tell us how he feels.
Step 2 Act in some way shape or form to help him.

First time sucks.

Cody had to stay home from school today because he was low. He was low all day yesterday after spending the night at his cousin's house. He laid in bed all day and was completely in crisis. He didn't want to do anything but lay under the covers and barely watch TV. Prior to staying at his cousin's house he was already doubled because he was just on Christmas break and after long breaks from school he needs more medicine to recover from the abnormal schedule.

We bumped his meds yesterday, today and then tripled his meds tonight. Nothing has seemed to help so I called his doctor. The last two times this has happened our doctor would have told us do a triple dose Cody for 2 or 3 days. During those crises none of that helped, it took a visit to the ER for an IV of his medicine to get him through these type of low crisis times (essentially giving him his emergency shot only via IV instead) .

For the first time since diagnosis our doctor told us to give him his emergency shot today instead of waiting 2 or 3 days for the oral medicine to kick in. So tonight I gave him his emergency shot for the first time. Of course he hated it and so did I. The needle they have us use is too big in my opinion (too thick). We need a different gauge. It is a 21 gauge and I am thinking he needs a 25 gauge. Anyway it hurt him bad and I could tell it did when I stuck him with it. I'm no rookie at this either I have given myself a minimum of 1 to 2 shots a week for the last 4 or 5 years. It hurt because the needle is too think.

We go for our quarterly visit this week so I'll be asking the doctor about that change needle size, but the shot did help. He is starting to bounce back. He is not completely recovered but in the last hour or so since his shot he is much better than he has been in the last two days of giving him double/triple his medicine. I don't know what it is about him and his oral medicine when he is low; the liquid works almost instantly. Obviously its about absorption but still taking triple should bring him back to normal and it doesn't.

We have noticed that with a shot he has not recovered quite as quickly as an IV with his medicine, but I believe that is the difference between straight in his blood versus in his muscle then adsorbed in to his blood.

I am glad the doctor let us do the shot sooner than normal as he gets to get back to life sooner. Time will tell once tomorrow morning gets here and that shot has had its time to get completely absorbed in his body. But it really sucks that Christmas break, two days of school, and a night at his cousins house has caused this crisis.