Road Tripping Theisen Style

Thanks to the recent school schedule change to “year-round” in our district, summer break is a bit earlier for us than most. And while many people take road trips this time of year, few do it like us.

Just last year spring break was a road trip to Pittsburgh and Philadelphia to see specialists (recap found here) As you know if you have been to this site, or followed along on Facebook, our latest specialist visit is to the University of Minnesota Masonic Children’s Hospital for a week long consultation. So while it may seem our road trips aren’t of the ideal variety, we try to turn them into a positive and explore the towns we visit. Neither Liz or I had been to Minneapolis before so we were looking forward to this trip personally as well as medically.

But we had to make it there first…….

In the days after her last inpatient stay she was doing well.

Even Jonathon got in on the fun. We had some great response to our call for help with meals. One of them happened to be a friend who is a police officer. Jonathon took full advantage of them bringing food over.

Back to regularly scheduled Emily programming. Some follow up appointments at Riley still had her feeling in good spirits, I think Opa hanging around for the day contributed to that.

But then with only a few weeks to go before our trip things took a turn


That same night she wasn’t feeling good enough to go outside, but she wanted her stuffed animal to go enjoy the weather anyways.

Even with the tough battle she had been fighting since being released there is always hope. Sometimes that is all you have to go on is hope and prayers. And boy do we have a huge network of people hoping and praying with and for us. Liz’s aunt, Jan Stokes Faber, took it upon herself to have bracelets made to raise awareness and funds. We show Emily every picture posted to Facebook with people wearing her bracelets. She is starting to realize a little bit just how many people are thinking of her. Here is a great shot featuring Liz, Michael, Jonathon and Michael’s girlfriend Alexa.

 


Just days before we left,¬†we weren’t even sure Emily would be stable enough to make the 9 hour (11-12 with a 3 year old) trip. In the weeks leading up to our planned travel date she struggled worse than she ever had.

What you didn’t see on Facebook was the numerous calls with doctors discussing how she was doing and what their thoughts were about us traveling so far. Lots of nervousness. Lots of uncertainties. But then she started improving, just in time.


The doctors were on board. Emily’s body seemed to be on board. It was time to pack.

If you have kids you understand how difficult it is to pack for a trip. On top of that we have to pack for a medically complex kid. And for a week long trip to boot. Her medical supplies get their own suitcase. Her feeding supplies get their own rolling cooler. We even had to get an extra mini fridge ordered for the room to fit all of her medicine and fluids. It is quite the operation daily, it is a whole other thing for a week long trip. As I’m typing this so far my amazing bride hasn’t forgotten a thing and has packed enough of everything. Luckily for her I’m a big enough boy to pack for myself these days.

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Travel Day is Upon Us

Saturday June 4th. We had intended on leaving as soon as possible that morning. With a likely 12 hour drive (9 hours straight through) we knew the more we planned for the unexpected the better. We were getting into town a day early as it was to help alleviate the travel stress. Lucky for us we had that buffer room.

Emily has her port de-accessed and re-accessed every Monday. With the travel schedule messing up that cadence we had to have her port change happen at the last possible minute before leaving town. Shouldn’t be a big problem, happens regularly every week. Well her normal home health nurse doesn’t work Saturday. No biggy, she was going to request someone else who had accessed Emily before and who had great success in doing so. For some reason he wasn’t assigned to Emily as planned. The nurse assigned came out and after three attempts couldn’t get her port accessed.


Side note: When we talk about accessing her port that means taking a 3/4 inch long needle and shoving it into an implanted device just below the skin.¬†¬†The cylinder you see in the picture rests entirely below her skin. So that means pushing that needle into her and pulling it back out when it doesn’t work. It’s less painful than getting an IV placed but painful nonetheless. You are likely looking at the picture and thinking to yourself, that should be easy to hit the spot. Why would they need to do it multiple times? With Emily being smaller, fluctuating weight and low muscle tone her port “floats”. So while they could have the needle in the port, the port couldn’t be exactly where it needs to be to allow for the flow of blood and fluids. This was the case with the first nurse on Saturday.

 

So now we are really concerned. She needs port access to get her fluids that give her nutrition. With her metabolic issues she can’t go without “eating” like you or I can (I can’t go without eating either, but that’s by choice) After three attempts she was traumatized enough that we said no to more attempts by this nurse. Good news though. There was another home health nurse working Saturday and she was pediatric specialist. She was used to accessing ports. The only problem was she was in Greencastle finishing up with a patient. That is about an hour plus from our house. Still this wasn’t a big deal and didn’t set us back in our travels one minute. Why is that you ask? Because of Enterprise Rent-A-Car policies.

We got a rental car to avoid the wear and tear on our family vehicle. Because of the generosity of so many on this website and other forums we could afford to rent a vehicle for the week. We had used Enterprise before, it was close to the house, the price was good and a “Large SUV” was booked. The only problem was when we booked it online there was no clear mention of a new requirement. For any “Large SUV” or bigger a major credit card was needed at time of rental. This was a new policy change in recent months. Since we had only rented smaller vehicles in the past we wouldn’t have known if it was an old policy or not. So when I arrived Saturday morning to retrieve our rental I was surprised to learn we would be getting a Tahoe. Online the Large SUV distinction said we would be getting a Dodge Journey. Likely enough room for us, but with all of her medical supplies and luggage for a week it would be tight. So while I was partially excited about having more room in the Tahoe, I wasn’t thrilled with the gas money it would take to drive across three states. Regardless we started the checkout process, I handed them my Visa backed bank card. It was then that I learned of the policy change mentioned above. The suggestion was made to find out if I knew anyone that had a major credit card who could put it against the vehicle. It would just place a hold of a certain amount on the card, I could still pay with mine upon returning it. I started texting, messaging and sending out smoke signals to anyone in the area I felt comfortable asking for help. We had two hours before they closed (why noon on a Saturday?) and had to get out of town. All of this was going on while I had no idea about Emily’s port issues mind you.

So while I was searching for help Enterprise had a great idea. We can transfer a smaller car (wouldn’t require a major credit card) from another location. For some reason an $18k Buick Encore can get rented with ease but a $20k Dodge Journey requires an act of Congress. Either way I agreed to that idea while still looking for a credit card. In the meantime the Tahoe was rented to someone else who had a reservation and a credit card. So the Encore shows up and we go outside to take a look. Not a chance we were going to fit into that thing. There was Jeep Commander or whatever its called, not much bigger than the Encore. At the same time the Encore got transferred over Jennifer Thurston showed up. I had gotten a hold of her husband Todd a little bit earlier (while has was on the golf course) and he said they had a credit card we could use to hold against the vehicle. Jennifer was in the process of leaving to take their boys for haircuts so she didn’t mind coming over to help. Now that she showed up I wasn’t even sure we could get a vehicle since the Tahoe was gone. Turned out another Dodge Journey was transferred. Perfect, the original vehicle we booked just with the hour delay and inconvenience of asking a friend for help. Paperwork was signed and we would be on our way soon.

In the middle of the car mess I learned of Emily’s port issues. Liz had been making calls to other car rental companies but had to stop when the port access struggles popped up. All is well though. I was heading home with a vehicle, a pediatric nurse was on her way to access Emily and we would hit the road. As you may have guessed already the plan didn’t work out like this. The pediatric nurse had all kinds of troubles accessing Emily. She would get the needle into Emily, but we found out later on that it wasn’t in her port. Upon trying to flush and draw back on her line Emily screamed in pain. Turned out the nurse missed and put some fluid under her skin. The pressure was painful to Emily. After two tries from someone who does this all the time we were back at square one. Emily traumatized again. No closer to getting on the road. Emily still without her nutrition and fluids needed to keep her body and sugars regulated. The nurse said she didn’t feel comfortable trying anymore and was beating herself up over not being able to access her. We asked if she could call the original person we requested. She did, but he was tied up with four new admits and wouldn’t be able to help that day at all. So our only other option was to head to the ER at Riley Hospital. Riley just happens to be 40 minutes in the opposite direction of Minneapolis. But we had to do what we had to do.

Yes you read that update right. After packing up the vehicle we realized the charging ports didn’t work. Tried with the DVD players, both car chargers and different phone types. Nothing. So on the way to Riley Liz was calling trying to get a new vehicle to swap out. Good luck finding a big enough vehicle for us on a Saturday afternoon two days after most schools in our area let out for the summer. We finally got a hold of someone at corporate customer service who hooked us up at the airport. So after dropping off Liz and Emily in the ER I headed the 15 minutes to the airport to swap out cars. Minus driving through a downpour this was about the only thing that went as planned. We even got into a Dodge Grand Caravan with all the cool push button doors. More room, better gas mileage and fun features, what’s not to love about that.

While our ER stay was a bit longer than planned it wasn’t due to any faults. We were literal minutes away from getting her port accessed when an emergency came in via ambulance. There is nothing like being in a pediatric ER to help you understand while you may have it rough, it could be so much worse. After that case was handled they came to access Emily. We got very lucky that the nurse assigned to our case was a hemoc nurse. This means she works with blood draws, blood transfusions and ports all the time. She was great and accessed Emily successfully in no time.

The trip went pretty well to start. Emily started to sleep once we made it about an hour and a half. We stopped to change out her fluids about two hours into the drive and got coffee. She fell back asleep and we made it through Illinois without any incident. We were able to hit a spot in southern Wisconsin that had some civilization right when she needed her normal medicine. After her big day she was still sleeping. Everything was going well with little traffic so late at night. The late night travel through the country in central and north western Wisconsin caused some other problems. When you put highways in the middle of huge forests animals like deer tend to wander near roads. Pitch black country and deer near highways don’t mix well. After seeing a couple deer on the side of roads we were on the lookout as much as the 5 Hour Energy drinks allowed. I was driving the entire trip since Liz’s foot is broken and in a boot. Luckily I was alert enough to see a deer in the middle of the highway. Also it was lucky we were driving through that part in the middle of the night since that meant nobody was behind me when I had to hit the brakes. The deer thankfully moved on from the road and let us continue.

We got to Eau Claire, Wisconsin at what we thought was the perfect time. We needed to change out her fluids again and the only 24 hour gas station for miles happened to be at the exit we chose to stop at. Emily woke up ok and then the unexpected reared its head again.

We ended up seeing the sunset during our drive and seeing it rise just as we got into Minneapolis about 5am.

So many big things awaited us in Minneapolis, but we had to make it here first. Now that you know what it took to make it here the next post will be what we learned while here. As I type this we have already learned a lot. Some good, some less than ideal (go figure) We are awaiting one final day of testing and appointments before updating the site with all we have learned. If you want some spoilers checkout Liz’s Facebook page for some daily recaps.

If you take a road trip soon hopefully yours goes a bit smoother, and has a more relaxing reasoning behind them than ours have. But I guess that’s just the way we roll.

3 Responses to “Road Tripping Theisen Style

  • Shirley Ellis
    1 year ago

    That’s exhausting just reading about your trip, without having to worry about the medical concerns! Your family’s strength is inspiring!

    • chrisjtheisen
      1 year ago

      We like to keep things interesting that’s for sure.

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