The Medical Emergency

Okay, the suspense is finally over, partially anyway. I decided to tell each mishap separately. I thought it would be much more fun this way. Like I said, you seriously can’t make this stuff up and it makes for a good story…later anyway!

Don’t worry, the medical emergency was not Sam.

We set off to Florida very early in the morning. TSA Cares is a wonderful program and definitely makes going through security with a complex child a much more smooth process. I would highly recommend taking advantage of this service if you are traveling with a medically complex child.

All was going well. We had just got into the air. All of the sudden, I hear screams coming from the back of the plane. My instant thought, looking at Sam’s nurse, ”You’re a nurse, you should go back there!”

Come to find out an older man had passed out. They were about to lay him on the floor and start chest compressions, but thankfully he came to. Sam’s pulse oximeter came in handy. We took it off Sam for a few minutes and Sam’s nurse was able to use it to check the ”patient’s” oxygen level and heart rate. His numbers showed he would hopefully be okay.

They turned the plane around to go back to Minneapolis. After we landed, the ambulance got the passenger, and who I assume was his wife, off the plane, we sat on the runway for a very long time. During all of this, we were not allowed to “move about the cabin”.

Sam did great on the almost six and a half hour flight we were not planning for. Like when we went to Cincinnati, he needed a little oxygen in the air. This VERY busy little boy surprised us for how well behaved he was. Thank you Lord for IPads!

Once we finally got there, got all of our luggage, and the rental car, we were all pretty hungry at this point, except for Sam, of course. After searching for a bit, we found a great place right on the ocean. We had some time, or so we thought. It was around 3:00 and check-in wasn’t until 4:00. We got our food and I began to get text messages from two different people about checking into our condo.

The message that took me by surprise, and the only message I remember is, ”The office closes at 5:00.” Say what?!?!

I knew we couldn’t check in until 4:00, but I had no idea we only had a one hour window! Uh oh! Everyone, eat fast because we have to go! Sam’s activeness didn’t leave much food in the bellies of Sean and I. Oh well, we gotta go!

We made to it our condo and that’s another story in and of itself. There was A LOT of confusion and a language barrier. We rented two different condo’s with different owners. Thinking this had something to do with the confusion.

After things had mostly been figured out, I asked the about the packages I had delivered and where we could get them. The security officer, responded, “Sorry, the office closes at 5:00, you’ll have to get them tomorrow.” Um….yeah, that’s not going to work. This isn’t extra clothes I sent. My son needs the things in those boxes to live. I politely explained the packages were for my son who is medically complex and needs the supplies in the boxes in order to live. For real. Their eyebrows went up and all of the sudden, we were able to get the packages. Whew.

Once we finally got all of our luggage and Sam’s medical supplies to our condo, we were all pretty tired and hungry, but weren’t going to let that ocean wait another day for us! It might have been dark, but it was still beautiful!

To be continued…

Tips for Traveling with a Complex Child

Those of you following Sam’s story, may get a little bored with this post. I’ve joked several times throughout the process of figuring out how we will get Sam to Cincinnati, who travels with a complex child for fun?! I’m glad, in a sense, we’ve been “forced” to travel with Sam. Honestly, if we hadn’t, I don’t know if I would have otherwise pushed myself to navigate this uncharted territory. It’s my hope I can ease some anxiety of a mama or caregiver who will be traveling with a trached kiddo for the first time. Here it goes!

Have patience.

Start planning WAY in advance. The earlier you start planning, the better. I started planning over six months prior.

Ask lots of questions.

It’s okay to cry throughout the process.

Rely on your child’s home care nurses and respiratory therapist.

Connect with and talk to a few mamas/caregivers who have “been there, done that”.

Click here to download this SUPER helpful travel checklist from Pediatric Home Service. The first page took a lot more patience than I expected it to. I had a tough time figuring out who the pediatric medical supply company in the area was, but it was worth the diligence because they have been a HUGE help. Give yourself lots of time to slowly fill out the checklist.

Decide what supplies you will have shipped to where you are staying and what supplies you will pack. Sam’s home care nurses and I tracked his supplies for the same number of days we will be traveling a few months before our trip. This gave me general idea on how many supplies we would need for the trip. Keep in mind, your insurance will only cover your normal maximums. If you’re still reading and don’t have a complex child, we get ten to twelve boxes of medical supplies each month for Sam. Yes, we go though most of the supplies each month. That makes for a lot more extra packing when traveling with a complex child.

Connect with a general manager of where you will be we staying. Make sure they are aware you will be having medical supplies shipped there. Get a contact name you can address who the supplies will be shipped to. This will likely be foreign to them. Be very transparent. You will want the supplies to ship a day or two before you arrive.

Get a file folder to keep all of your child’s paperwork. I combined a lot, but the basics are…

Hotel/Car Info.

Cincinnati – I put all the paperwork I received from Cincinnati or will need for our hospital visits. This includes Sam’s itinerary and pre-op (Pre-Procedure Physical Exam) form

Plan of Care/Orders – Portable Oxygen Concentrator Approval, Statement of Medical Necessity, Plan of Care, Any other orders that may apply

Medications/Supplies – List of all of Sam’s medications, List of supplies which includes the supplies we will pack and the supplies that will be shipped to the hotel

History/Scope Pics – Copy of Sam’s in patient history, Cincinnati requested I bring the copies of all of Sam’s scopes

Care Team Contacts – List of contact information of anyone on Sam’s Care Team

If you are flying…

See if your airport has a program for traveling with children who have special needs. Sign up and go to this before you travel. In Minnesota, we have the Navigating MSP Program. The most useful part for me was going through security with all of Sam’s medical supplies he needs with him at all times. Keep in mind, security will open and test every liquid.

Navigating MSP Program
Kids will get a chance to go in the cockpit.

Navigating MSP Program
Sam thought it was pretty great in the cockpit.

Take all of your child’s medications with you as a carry on. We bought a backpack cooler so the meds will be easier to transport. All medications need to have their prescription labels attached.

Does your child eat by mouth? If not, ask what others have done to ease ear pain. We’re going to try EarPlanes. I’ll let you know if they worked or not for Sam.

OXYGEN…start this process very early in your trip planning! You cannot take oxygen tanks on an airplane so you will need to get a portable oxygen concentrator (POC) that is FAA approved. Depending on your child’s oxygen needs, the FAA requires 150% battery life for every one hour of flight time. For example, based on our one and a half hour flight, Sam will need three charged batteries. The POC will need to be approved forty-eight hours before you fly. Unfortunately, your insurance will likely not cover a POC, but if you’re child is on a waiver, that will. You will have to go though the process of getting the concentrator denied by your insurance before the waiver will cover it. You will not be able to fly if you do not get approval for the POC.

Call TSA Cares 72 hours before your flight to get assistance at the airport with security.

There is A LOT more I could add to this post, but these were the things that have taken up most of my time and energy. Acknowledge it’s a very overwhelming process, but don’t dwell on it. On the days you become too overwhelmed, quit for the day and try not to think about it.

If you fall upon this site and need to talk another mama/caregiver who’s “been there, done that”, please do not hesitate to reach out to me. I would be happy to answer your questions or just encourage you along the way.

We haven’t traveled with Sam yet, so stay tuned for part two of “Tips for Traveling with a Complex Child”.