The Up and Down Roller Coaster of Parenting a Medically Complex Child

You've heard it before.   Being a parent to any child is like riding a roller coaster.  It can be fun and exciting but also a little scary.  There are twists and turns and ups and downs that you weren't expecting but in the end you are so glad you did it!  

Being the parent of a child with complex medical needs is more like riding an unpredictable, shaky roller coaster.  This coaster often sits at the edge of the park and is isolated away from the others.  Many people avoid standing in line for it.  Others get in line for it by chance but have no idea what they are in for.  The beginning of the ride may start out smooth or be so bumpy you think you will throw up.  During the uphill climb, your excitement and anticipation builds as you inch along with slow and jerky movements.  You crest the hill and before you know it you are moving downhill at warp speed.  You hold on for dear life in fear that you are going to fall out.  Then it happens all over again.  

And again. 

And again. 

The ups and downs and twists and turns are magnified and extreme and you don't always know how you'll survive it.  But you feel bursts of joy and excitement along the way which is coupled with the relief and gratitude you experience each time you survive another sudden drop.  This seems to give you the courage and strength you need to keep going.  So you do.   

Sometimes it takes days, weeks or even months between the very up and the very down.  Today, on my roller coaster ride, it was within a coupe of hours.

This afternoon, we were given yet another new diagnosis.  We've received a lot of those lately.  You'd think Parker's body would be running out of things that can go wrong by now.  None of the options to manage this new condition are fun.  The treatment ranges from sucky to awful.   We decided to start with the sucky option (regimented toileting schedule during the day and nighttime catheterization every night) and hope it makes a big enough difference that surgery isn't needed and he doesn't get another kidney infection.  

I know that we can handle it.  We've never had to catheterize before but we can learn.  The doctor even commented, "With all you do for Parker's medical care, this will be no problem!"  I know he's right.  If we can handle a trach, feeding tube, seizures, hearing loss, vision loss, developmental delays, motor skill deficits, behavioral issues, non-verbal communication, weekly immunoglobulin infusions, 12 scheduled medications a day plus a stupidly long list of PRNs, an incredibly restricted diet due to multiple allergies and GI issues and multiple therapy and doctor appointments a week....then we can handle a catheter.   

But the news still bummed me out.  I mostly feel bad that Parker has to deal with this on top of everything else.   Poor guy just can't catch a break.   Of course, I have no doubt he'll handle it like a champ because he's a trooper and is braver than most adult men.  But sometimes I sure wish he could just be a carefree and healthy kid.    

That roller coaster took a deep dive down during the telehealth visit with the MAYO doctor this afternoon.  Afterwards, I wanted to get in my PJ's, make chocolate chip cookies and eat half the batter, cuddle up with my kids on the couch and watch a funny movie.  But special needs mamas very rarely get to do what they want.  Instead, I loaded Parker and all his gear into the van and drove across town on this HOT and HUMID day (why do we live in Nebraska again?) for Parker's physical therapy appointment.  I wasn't looking forward to it because I didn't think he would participate much.  I haven't been able to get him to do much walking the last couple of days.  Yesterday he wouldn't even walk much for his favorite respite nurse, Ms. Dee.  He usually always shows off for her!  

They are trying to figure out why Parker's walking and lower extremity strength has regressed and if the urological issues may be related in some way.  There isn't an easy answer which is why Parker has been so busy with new specialists and tons of tests lately.    

Suffice it to say, I didn't have high expectations for PT today.   But to my amazement, Parker took EIGHT independent steps in therapy!   He hasn't done that for months!!  I couldn't stop smiling and Parker was clapping for himself and so proud.  It was pretty much the greatest thing ever.  For a moment, whatever worries I had from earlier today melted away and I experienced nothing but pure joy.  We were on that uphill climb once again!  

I hope we get to stay on the uphill climb awhile longer before we head down again but you never know if exciting progress or heartbreaking setbacks are around the corner.  That's the life for a medically complex parent.   You are in a constant state of hoping for the best but preparing for the worst.  I don't suppose it is something you can really understand unless you've lived it.  But today I guess I wanted to share.  

And now some pictures from the last couple of weeks since I haven't written a blog in FOUR years...

At Parker's baseball game

Parker doing his favorite summer activity!

Alexa helped Parker build a robot for a summer school project

2017 Nebraska and South Dakota Road Trip

We just got back from our 2017 Family Road Trip of Nebraska and South Dakota where we visited several National Parks and landmarks.   This trip made me think a lot of Dad as we spent many summers when I was a kid traveling to National Parks and looking at rocks.  Of course, as a kid we did a lot of tent camping which I wouldn’t dream of doing with Parker but for our family this was pretty adventurous.  I’d call the whole thing a success as we all got along pretty well and no one ended up hurt (which I also can’t say was the case when I was a kid because I think my Dad had some type of blood sacrifice on every trip).  I do have to say I’m very grateful for iPads and technology for the kids and lots of snacks for Paul and I.

Going on a road trip with a medically needy child adds a bit of challenge to say the least.  We have to take a whole lot of equipment along which packed our van to the brim.  We took along his stroller/wheelchair, portable oxygen, suction machine, pulse oximeter, 50PSI (which is the humidity machine that he uses at night), nebulizer and feeding pump.  This was in addition to the huge suitcase filled with all of his medical supplies, meds and emergency stuff.   We stayed in 3 different hotels in 5 nights and this meant a lot of time packing and unpacking all of this stuff.  I felt like we were getting pretty efficient towards the end but I still prefer flying to my destination and staying in one place the whole time.  That is a whole lot easier!

 

Parker did fairly well with the whole thing.  We weren’t sure how he would handle the higher altitude but it wasn’t too bad.  His oxygen saturations were about 4-5 percentage points lower than they typically are but were still good enough that he didn’t need oxygen.  There was one day and one night that he needed A LOT of suctioning so that was a bit rough but the rest of the time was fairly manageable for a short trip.  With his suctioning needs, pulse ox beeping, feeding pump alarms, etc. the rest of us are pretty sleep deprived and this makes me even more grateful for our night nurses when we’re at home.   

We started our trip by stopping at Island Oasis in Grand Island.   It was a pretty decent water park and not too busy which was perfect.  Paul and Alexa got to go on the slides lots of times and Parker and I stayed in the shallow area and splashed around.

 

After leaving the waterpark, we drove to Valentine, NE for the night.  The next morning, we stopped to check out the bridge on Cowboy Trail that is just outside of Valentine.  It used to be a railroad bridge but has been converted to a trail.  The scenery is amazing and it makes for some pretty great photo opportunities as well.

Next we drove to Badlands National Park and were amazed at the rock formations.   I was a bit apprehensive to go off the trail and explore because there were signs everywhere warning of rattlesnakes.  So Parker and I stayed on the accessible path while Paul and Alexa ventured out a bit more. 

 

After the Badlands, we drove just up the road to Wall Drug in Wall, SD.   It was a nice air-conditioned break with lots of shops to look around in and yummy food as well!   I think this stop was Parker’s favorite for the day.  

Then we drove to Rapid City which is where we stayed for the next three nights.   On day 3, we started off at Rush Mountain Adventure Park and spent quite a bit of time there.   Paul, Alexa and I went on the zip-line.   We all road on the mountain coaster which Parker thought was great, especially the uphill portion!  Paul and Alexa also did a 3-D Gunslinger Ride (those things make me sick so Parker and I skipped it).   

 

Next we headed to Reptile Gardens.   They put on a pretty good crocodile, bird and snake (which I skipped) show.   Alexa got to pet a baby alligator and feed a bird.  Parker got to pet a huge tortoise and a baby boa.  We saw a HUGE crocodile (yes, that is real) and got to see enough snakes for a lifetime.   They really did have an impressive selection of reptiles and we had a good time there.   

On day 4, we went to Rushmore Tramway Adventures so Alexa and I could do the aerial obstacle course.   This was my favorite part of the trip and Alexa really enjoyed it too.  She was really brave as some of the obstacles were really high and quite difficult.  I was so proud of her.  We don't have a lot of pictures of this because I didn't have a camera with me and Paul and Parker took a chair lift to the top of the mountain and then took an alpine slide all the way down at the same time we were doing the obstacle course.   I think we all had fun!

 

After we had our adrenaline pumping, we took a short drive to Mt. Rushmore.  Paul and I have both been but not since we were kids and it was much different than we remembered.   Alexa completed a booklet and took a pledge promising to take care of the National Parks so she could become a Jr. Ranger.   We walked around the exhibits and took a nice accessible trail in the park as well.  

Next we headed back to our hotel so Paul and Alexa could check out Watiki Waterpark which was connected to the hotel.   They had a lot of fun while Parker and I checked out the arcade and did a bit of laundry – which shouldn’t be allowed on vacation!

The next morning we packed up and headed South to Wind Cave National Park.  I called ahead and arranged a special needs tour of the cave since the regular tours are not accessible.   Our tour was led by a volunteer ranger who took us into some of the larger rooms in the cave that can be accessed by elevator.  The cave is HUGE with lots of twists and turns all throughout.   It has more boxwork (a cave formation) than any other cave in the United States.   We all enjoyed the tour a lot and then we drove around the park to see some of the wildlife.   In just about 15 minutes we saw antelope, buffalo, coyotes and lots and lots of prairie dogs (which are super cute by the way). 

 

 

 

After leaving Wind Cave we drove to Ogallala, NE for the night.  Our hotel room was a bit interesting but we made do and we all slept really well for the first time the whole trip. 

On the last day, we stopped at Walmart for some beach toys and then headed to Lake McConaughy just North of Ogallala.  We've never been here before and were really impressed.  It didn't feel like we were at a lake in Nebraska with the white sandy beaches.  I think we'll definitely try to go back sometime and spend more time as we all really enjoyed it!  

On our way home, we made an unexpected stop at Courthouse and Jailhouse Rock so we could stretch our legs a bit.   We were the only ones out there and the scenery was pretty amazing.

We got back on the road and finally got home about 10:00pm.   Whew!  What a trip!   I think we created some wonderful memories and I'm glad we decided to try a road trip.  I'm not sure it will be our top pick for a summer vacation but it was definitely fun!