Remember how we were scheduled to go to Denver in December but Manny thought ICU sounded more fun? Well, I had bought changeable tickets and now was the time to use them or lose them.
7 suitcases, 1 car seat, 1 wheel chair, 2 carry ons, 8 backpacks. Drive to the airport.
All was uneventful.
... UNTIL ...
It was time to turn Manny's TPN on. (He gets a 4 hour rest daily.) And the pump died. Completely would not work.
I am OCD about troubleshooting, trying things. We were praying. I tried everything. I even had brought back up tubing (a common issue) and that didn't help. NOTHING worked.
I knew he could last for a little while, but not long before his blood sugar crashed.
We had a plane stop in Kansas City (didn't leave the plane, just dropped off passengers and picked up others). The transition was like 25 minutes. During that time, I called the Home health company and told our new Pharmacist, Dana, what was going on and that I'd need a pump in Denver either delivered to the airport or the house where we're staying. And then we were back in the air again.
He was fine.
You have to remember that this was about 9pm by this time and he usually goes to sleep by about 8pm. So he fell asleep and I thought nothing of it. It was pitch black in the cabin.
The flight from Kansas to Denver was only about 1 hour 15 minutes. I started getting that "strange" feeling. About 20 minutes before we landed, I repositioned him and he was dripping wet but FREEZING. I couldn't wake him up and his eyes were opened. It was Eeeerie. I carry his glucometer with me everywhere and have never needed it on the road but the TSA wouldn't allow it on the plane so we had to check it. So I didn't have it. I needed it to confirm just how low his blood sugar was and couldn't.
Got out of the plane to assess him better and see if we could rush to the baggage claim and get his glucometer but as I got him up and held him, I knew we wouldn't make it that far. I ran with him to the information center just a few feet away from the gate. I yelled, "Call 911". They did. Everyone rushed. They called a "Code 10" which is the highest code. Medics arrived and by the grace of God, they listened to me.
Welcome to Denver!
Unfortunately, the medics were unfamiliar with TPN, broviacs, central lines, etc. so I had to walk them through the whole thing ... but they listened! They were going to hang a bag of "sugar water" with 25% dextrose. And while that is a good thought, he's on 20% round the clock so this would not get him out of this soon enough.
They had a glucometer and it read "07". No, not kidding.
His eyes were opened but glassy. He wasn't there. He had this strange facial "tic" and a strange breathing pattern with very low respiratory rate.
The medic called the on call airport doctor who authorized an amp of D 50 via his broviac. (That was what I was suggesting.) Within about 5 minutes, he started moving. Eventually he was crying and coming around. They retested blood sugar and it was almost 400... but that was good news. I started to breathe for the first time.
In the meantime, the kids were standing there with their backpacks and carryons (it was 11 pm EST) and looks of terror on their faces. Meanwhile, Dan was on the phone with the home health agency and letting them know what was going on. He was supposed to be talking to the pharmacist (the person I'd called earlier) but somehow got patched through to the wrong person so they were lost and confused.
The Denver airport acted with a lot of professionalism. I was very impressed with how well they handled this horrifying event. I could see the terror in their eyes, but they did the right things in a timely manner. I will forever be grateful.
The ambulance arrived to take Manny and me to the local children's hospital and Dan and the kids were escorted around the airport by the police officer. Apparently she was amazing in helping get the luggage, the rental car, an escort, etc etc. So yay! Way to go Denver. (Manny and I also got a police escort off the airport grounds.)
In the meantime, I was in the ambulance with Manny and he was headed back to his usual self. He was shaken up and tired but talking and responsive. By the time we got to the hospital, it was 2am EST. Exhausted is beyond the word. I am a GREAT person in an emergency ... calm and together. But I fall apart later as I let it hit me emotionally. And as I sat in the ER room with just him and me, it started to hit me just how close to death he was.
The ER staff, the paramedics had never seen a blood sugar that low before. They said they've seen teens, but never 7.
But by now, he was stable. And I had the fortune to have an ER doc that worked at CHOP with very complex kids before and he listened to me. He asked, "If the pump had not malfunctioned, are you 100% confident that he would not have had this issue?" YES I told him. So he said, then we just need to get you a pump.
They worked on it. I worked on it. Eventually, I got hold of the Denver branch of our home health agency and they were able to get a pump (and a back up.) It all took a long time but it all worked out. Then it took a while to figure out the new pump, but I did.
Meanwhile, Dan was in the waiting room with the kids and his sister. We were discharged about 2:30am Mountain time (4:30am our normal time zone).
Then the 45 minute drive to sister's house. The baby SCREAMED the entire way. He was freaking out about something and we never figured out what. So I crawled in the backseat with him and
held his ears tightly as Sam covered his eyes. Eventually he calmed down some. He kept saying something about his eyes and we had no clue what he meant.
Arrived at the house and we hurried in, tried to get everyone settled and in bed. By then it was 3:30am local time and we'd been up for 24 hours ... all of us. (Well, except Manny who caught a few winks at the ER.)
I laid Manny in the bed and he FREAKED. He kept screaming about bugs. Now sometimes he says there are bugs on him, but that's his way of saying he is itchy. He was saying he was SEEING bugs. There were no bugs. I don't know if they were on his eyes or a hallucination. Either way, it was very freaky. He kept pointing, "RIGHT THERE!" and was quite upset that I didn't see it.
We slept for only 3 hours before Manny woke up and having a few problems. We got out and hung out. His blood sugar was stable. He was acting pretty much himself. The rest of us were dead tired.
This next part written a week after the fact:
Bottomline is that he shouldn't have crashed that fast! When we get home, I'm needing to have a serious sit down conversation with several of his doctors. We must get to the bottom of this. This was waaaay tooo close! I will need the back up pump and a back up emergency sugar supply (such as a bolus of sugar or glucagon shot or something). Plus we need to establish WHY is he doing this. I don't know how many times a body can bottom out like that and what are the long term effects of doing so.
Over the next few days, I did checks of his blood sugar and they were pretty stable. Still on the lowish side but stable. I've determined that when he is off for 3 hours, we're still usually ok but no longer stable by 4 hours (which is the protocol for now).
And me? I think I need some PTSD counseling. I'm amazing in an emergency. I'm the one you want by your side making clear thinking decisions and communicating acurately. But after? I allow it to hit me and that's when I fall apart. For the next couple of days, every time the thought was pass my head, I would burst into tears. I knew I was not processing it well. Took several days to come to grips with the whole reality of the situation.
What was my main issue? I believe God saved his life yet again. And in true God form, He likes Drama apparently. Me? Not a fan. But Manny got to be a light and witness to many people. And I'm thrilled that God let us keep him again. It's a CLEAR reminder that GOD only is in charge of the number of our days. And for some reason, He wants it on the forefront of my mind that Manny is always only minutes away from life and death. (gulp)
But my hangup is this ... why does Manny have to suffer so much? I don't think this is a lesson for him. He's TWO afterall. He's a baby! I can wrap my head around that I need to learn/do something or that others need to see the way we handle trials so that they can choose a Godly life or any number of possibilities. But Manny? I'm having a hard time with why he has to suffer so much.
And until I understand, I just keep plugging along. Trying to make the best decisions I possibly can.
And I am thankful. I get to keep my precious little boy.
My blood BOILED at the thought that TSA did not allow you to bring on his blood glucose meter. This is from their website.
ReplyDeletehttp://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1374.shtm
If you have trouble, go up the chain of command. Ask to see a supervisor. Pull up their website and show them that it is allowed. I partly do this for my/my child's safety, partly to teach the TSA so they don't put others who don't speak up in danger. I am a type 1 diabetic and my one son is on a medication that causes low blood glucose levels (we have both been in the teens). I have traveled with meters (and syringes, liquid meds, juice), most times I don't have issue now. I have had to request supervisors on occasion.
Glucagon is wonderful BUT it only works if your liver is working AND if you have experienced an extreme low in the last month (particularly if you have used glucagon) it will NOT work as well (as what it does is causes the liver to release it storage of glucose, which if has recently released it, there won't be as much, or if you have liver problems, your liver might not necessarily have enough stored). What about you having a D50 solution? (I don't know if that is allowed, but with his brac. it would be easy enough to hang if you had it on hand. And then you wouldn't have to rely on his liver)
The other comment is have you ever thought about a DexCom or Medtronics continous glucose monitor. Even if he doesn't always wear it, maybe for trips or when he is sick/having issues. Sometimes there is adhesive issues (but people are pretty creative about that issue of it). There is/was a 3rd system, the Freestyle Navigator, but it was having distribution/supply issues and I don't know where it is.
I'm glad Manny is still with you. You guys are in my prayers, including my prayers of thanksgiving (that Manny is still here today).