Wednesday, September 22, 2010

Things I've learned...

We have taken Max in through the Emergency Department for over 6 years.

And again, yesterday we had to take our guy in for seizures.

We got to the point where we weren't comfortable treating at home, and as we know our boy, he was not going to stop until he was loaded with medicine to "reset" his brain.

This has always been the case with seizures and Max. He gets into clusters, and we have to zap him with heavy duty meds to let his brain calm to get back to his normal self.

After 15 seizures in 24 hours, we were spent, so off to Children's we went. But, not before, or while rather, setting into action all the things I've learned through the years of heading to the help us get there and while we're there.

1. Plan for a stay.

2. Get Max's medicine together, along with cans of formula and all his powders for formula. The hospital doesn't have in stock most of his medicine...and when it is time to give his formula, if we have to wait for the pharmacy to mix it up, it usually takes all day.

3. Grab a couple of bags...and throw underwear, toothbrush, and clean tshirt and socks in there. On top of clothes go the electronics, and the chargers.

4. Change Max into a cruddy t-shirt. Not a onesie...because if the Flight For Life guys get to him first when he gets into the ED, those hyped up fellas like to cut his clothes up...every single time! And, if he has a t-shirt on, they are more likely to not cut it up because they can get to him to place the EKG leads they need to.

5. Get to callin'! When Max gets to the ED, it's best that everyone is on the same page. And because he has so many things to coordinate, all his doctors need to know we're in the hospital when we are heading that way. On the drive to the hospital, I call his nurse at his pediatrician, in the Special Care Clinic, to ask her to contact the ED that we're heading in. Then I call his metabolic doctor to make sure they know we're headed in, and that they call ahead to make sure the Dextrose 10% solution is ordered as his IV fluids, rather than the regular saline solution, which doesn't work with his metabolic disease. And of course, his neurologist. He's so rarely the doctor on call anymore, so he's not the one making the calls while we're in the ED..but it's always good that he know we're there, in case the doctor on call needs to call him.

This way, they know as soon as we check in that he's a high priority, and we're not just there because we couldn't get in to the doctor, or we don't have insurance. Sad to say, but so many of the patients in the ED these days are there for those reasons...and they often take up rooms that others need. We certainly have waited our fair share, but if he needs help quickly, it's better everyone involved knows we're not there for a bump or bruise. As is the case by the time we head to the hospital...every minute counts. And page the doctors again once we're there. All of Max's doctors are in the they are usually in clinic, but they all like to know where we are in the process when Max is in the hospital for illness or seizures.

6. Have his letter at the ready. As soon as we're there, I pull out Max's Emergency Treatment letter from his metabolic doctors. It outlines step by step what tests need to be run, and what fluids need to be given. Our nurse yesterday was training a new nurse yesterday. As I handed him our letter of treatment, he held it up and said to new nurse..."If you get a metabolic letter consider it Level 1 treatment...this letter is the follow it to a "T"...if you have a question, call metabolics first.". It has mystical powers, that letter. And it gets things going, that's for sure!

7. Have his medicines, and doses written down and with that letter. I don't want to be spelling out his medicines for the nurses while we're trying to hold him down while three different nurses are trying at three different sites to set an IV.

8. Have entertainment at the ready...because once the IV is set, fluids are started, and medicine is given, we're sitting in the world's most uncomfortable chairs for at least 6 hours. They want to watch him to make sure his stats are good before putting him on the floor...and if they aren't good, definitely want to watch him and see if they will be putting him in the PICU, rather than the floor.

9. Even though Max is usually zonked out, give gentle reminders that we're still there by laughing our heads off at each other. I especially like flicking the gummy EKG leads at Steve when he's not looking. We're usually a little punchy once we're there and relieved Max is going to be okay.

10. Be thankful for a leading hospital...and leading doctors who make him all better. We joked yesterday that Max has a "reset" button that only Children's Hospital can push. Once we're settled either on the floor, or back home, we're always so so so thankful we have Children's close, and that they take such good care of our Monster.

We are back home after a relatively short stay. We were just there 7 hours yesterday. He was started on a new medicine, that I imagine we'll keep him on. I think the seizures are just at a point that he needs more help to keep them under control. I'm glad to have to medicines at home to treat him, because we didn't need to be admitted once they saw he was not in status epilepticus, and wasn't having any seizures.

My legs and back ache from hanging over the gurney, but he's okay. He's been talking non-stop today, and did AMAZING things in speech therapy today. He used his "talker" to tell his speech therapist that he wanted to play with his computer, and play with the ipad, and "thank you", "what's your name", and "I love you".

He woke up hungry, and has been all smiles today. I may get a good photo of his gummy smile now that he's not doped up. Tomorrow is school AND music therapy...he's so looking forward to both! Thanks for all the thoughts and prayers. Now we know a simple teeth cleaning and extractions can cause so much pain, we'll plan accordingly next time!

**Note that I started packing well before we called the doctor to see if we should go into the ED, or into his office. Max was not in a life threatening situation, so I had time to pack a few things. As has been the case before, if he is in trouble, we do good to put the dog in her bed and make sure we're all clothed, shoes on, and hair brushed before heading out the door. This is what happens when I have 5 minutes to think before heading out the door!**

1 comment:

Junior said...

So sorry Max needed the hospital but so glad you have a good one nearby and are back home. Hugs