Maddison Ohs, Special-Needs Parenting, Tube Feeding

Camping trip 2018

Our greatest adventure yet: camping with our Tubie

There is no doubt that I was extremely wary about taking Maddison along for our first camping trip. You see, a toddler who is fed through a feeding tube, and camping, aren’t really two things that go hand-in-hand.

But we don’t want Maddison’s medical conditions to give us an illusion that she is limited when she actually isn’t.

Maddison is medically complex (more explanation in her bio), and it does in fact have things that limit her. But we didn’t think that camping should be one of them. She has been healthy and stable for over six months now, so why shouldn’t she get to go camping?

I tried my best to keep my expectations to a minimum. As it was our first time camping with the two kids (sans dog), my real objective was just to survive a couple days. We would be sleeping in a tent, but we would have access to my parents fully equipped RV. There would be cell service, running water, electricity, and a whole lot of family to lend an extra hand. I was hopeful that it would be a pleasant trip. This would be an opportunity to make fun memories, all while we hopefully avoid a trip to the hospital – which we actually just barely avoided.

Planning and packing took a week

I was not going to take this trip lightly. After all, forgetting essential tube feeding or medical supplies so far from home would be a big deal. We would be a four-hour, one-way drive from home. It could mean that the moment we unpack and realize we were missing said item, we’d have to pack up and head back home. So I’m not joking when I say it took me a week to pack. I meticulously made lists for everything. Throughout the week I made notes about every single thing I used for Maddison, and I’d add it to the list. I probably read through the list a hundred times making sure I didn’t miss anything.

Most importantly I had in big bold letters: Don’t forget the pump charger.

Packing list for Maddison:

  • feeding bags
  • extensions
  • 60cc catheter tip syringes
  • 10cc slip tip syringes
  • 3cc slip tip syringes
  • liquid formula
  • sterile water
  • pedialyte
  • waterproof tape
  • coloplast dressing (for covering the button at the beach)
  • g-tube pads
  • gauze
  • spare g-tube button (if her g/j was pulled out fully we would be able to put in the spare g button to hold the stoma from closing)
  • printed feeding, fluids, medication schedule
  • ice packs
  • infinity pump
  • pump charger
  • medications
  • vitamins
  • q-tips
  • other medical supplies: pulse oximeter and probe, suction machine and tips
  • baby video monitor
This post contains affiliate links to items on Amazon.

Trying to make things easy

There were a couple of things that I did differently than I usually do in our home routine. These were simple adjustments that would eliminate some extra work I didn’t want to do while camping.

  1. I saved up some feeding bags so that I would be able to use one bag a day. Our supply company usually gives us 1 bag for 48 hours. I didn’t want to have to worry about cleaning the bag in-between days. So I used one bag a day and threw the bag out after 24 hours of use.
  2. Liquid, or pre-mixed formula. At home we use the much more budget-friendly powder formula, with a recipe of 1:1kcal. But I wanted to eliminate bringing along extra bottles, the powder, include the mixing, and keeping the formula refrigerated. However it did take time to do the math to re-adjust Maddison’s feeding schedule to make sure she was getting the correct amount of fluid and calories – but I did it! The convenience of liquid formula was blissful.
  3. I used a two-extension system. At home Maddison uses the same 90 degree lock extension for an entire week. We take off her extension every morning, wash it, then attach it again to administer her continuous feed for the day. I opted to switch her extension immediately over to the spare, already cleaned, extension. This way I had the entire day to find time to give to other extension a good wash.
  4. I switched Maddison’s “water feeds” with Pedialyte. This meant she would get approx. 60ml of Pedialyte per day to help with any dehydration should could have accumulated. The forecast was said to be very warm, and I didn’t want to chance Maddison getting sick from it.
  5. I would draw up two days worth of medication at a time. This way the pre-drawn medication was easy to grab and go.
  6. I brought my own sterilized water from home in 8oz Medela bottles. Maddison doesn’t require sterile water – but I was just playing it safe with unfamiliar campsite water.
Make your own sterile water by boiling water on the stove for 20 minuets, then cool.

At the beach

Maddison was her happiest on our camping trip when she was allowed to play in the sand. She would just sit in the sand, run it through her fingers and smile with delight. I had shared a little bit about the three products that make Maddison’s trips to the beach possible in the blog post about her first beach experience. Again, these three products were essential for a successful trip down to the beach:

  1. Comfeel Plus by Coloplast transparent dressing to cover Maddison’s button. This created a water and sand-proof barrier to protect Maddison’s stoma. Picture, and longer description in our beach post.
  2. Battery operated clip fan to help keep Maddison cool. It has strong wind power, and a nice large clip to clip it to the stroller, tent, chair, or just sit it down like in the image below. I’ll also add that it comes with a little sponge on the back of the fan to add essential oils. We didn’t have to bring the diffuser – just the fan!
  3. Waterproof bags were great to hold Maddison’s pump backpack. I didn’t have to worry about it getting dirty, or wet. The set I ordered comes with 5, 2 of which fit the backpack, and the other ones I used for wet bathing suits.

A hospital trip thankfully avoided

It is true what I said in the opening section of this post; we almost had to go to the hospital for Maddison.

I had woken up in the morning as Maddison began to stir around 6:30 am. I got her up, changed her diaper, and as her pump beeped “DOSE DONE” I shut the pump off and proceeded to give her her morning medications through the jejunal port. As I tried to push one in, it instantly splattered back on me. I tried again to flush anything through her tube, but nothing was going through. I checked her feed bag from over the night and it still had plenty of formula left. Why didn’t it beep “NO FLOW OUT”? I didn’t have time to worry about that – if there is nothing going through the tube that must mean there is a blockage or a kink somewhere in the intestinal portion of Maddison’s jejunal feeding tube.

This is a very big deal

I quickly got the spare extension and administered her medications through her gastric port, silently praying that she wouldn’t reflux them back out. Then I got to work trying to solve our very pressing problem: a blocked j-tube.

We’ve never had this happen before, but I knew of two tricks: using warm water to help expand the line and loosen the potential blockage, or fizzy pop to help break things up. I sat there for 5-7 minutes trying to push any sort of fluid through the line, but nothing was moving. I figured there was a kink and we’d have to go to the hospital to have Interventional Radiology replace her tube. ‘Would they even have 16fr, 20cm g/j feeding tubes?’ thoughts racing through my head.

Just before I was going to wake Alastair up to tell him we had to go to the hospital, the fluid I was trying to push through the extension finally released and flushed through. Quickly I drew up another syringe and kept flushing. Things were finally flowing smoothly. Whatever had been blocking it was now gone.

This thankfully was the only time we have had issues with Maddison’s g/j tube. Hopefully it will be our last!

Family memories made

Growing up, my fondest memories where made while camping with my family. And this trip wouldn’t have been as successful as it was without my parents, aunts, uncles, and all the cousins. Everyone pitched in to help with the kids, and make sure they had a blast – which they did. I feel incredibly blessed to have this kind of supportive family, as we do.

Being wary about taking Maddison along for our first camping trip we booked for 3 days, but we extended the trip for another 2 days.

Check out these pictures:

  

  

   

Everything about this trip was equally exhausting and great. We were tired, but had smiles on our faces. Going camping with our tube fed baby was a success! I am so happy we decided to give it a try, and we can’t wait to go again next year!

 

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