The constant care that a medically complex child demands can be overwhelming at times. You may have reached a point in the feeding tube journey when you needed a break from the beeping pump, the daily worries, the long NICU days, and the constant attention that a tube fed child can seem to require.
In the beginning, my husband and I were so overwhelmed by all of the new feeding tube responsibilities and were hesitant to put that stress on anyone else. It was isolating. We started to feel that it was near impossible for us to ever leave our son's side. Learning that other people could step in from time to time helped open up a world of comfort and peace for our heavy hearts and worried minds. For this, we give thanks to our 'village'.
Our friends and family have stepped outside of their comfort zone in order to care for and strengthen their relationship with our tubie, Arlo. It takes hard work, patience, and there is definitely a learning curve involved. Allowing other people into this world is such an important step in making the feeding tube part of your entire family's new normal and to allow for the much needed 'step away' once in awhile. We are so thankful for this as we've had some time recently to reconnect, allow for self care, and strengthen our needs as a family.
After appreciating the benefits of these breaks, we feel compelled to share some ideas with you so that you're able to do the same. Here are some tips for you and the caregiver of your tubie to help this transition of care become a comfort instead of a concern.
TALK OFTEN ABOUT CARE (WHY AND HOW)
My mind is a never ending list of to-do items and reminders. I'm constantly double checking the pump dose and rate, talking to Arlo about flushing his tube, questioning whether or not his coughing is due to his esophagus closing, his cleft opening or if he's just plain sick.
Allow your caregiver to hear and understand your thoughts. Give your caregivers a peak into the details of your day. The first step to making your caregivers more comfortable is to help understand WHY things need to be a certain way. When you're flushing the tube with water, talk about it. When the bump beeps, explain why and show them what to do. When you're preparing specific food that they are able to eat, explain why it needs to be blended, frozen, warmed or diced, for example. The more these tasks become familiar, the less intimidating they seem. Some natural ways of incorporating these thoughts out loud without sounding forceful include:
"I always make sure to double check the dose and rate..."
"Can I show you what to do when the pump beeps like this?"
"Every time his pump ends we use water to flush it like this..."
"He does a much better job of drinking when he can use a straw because..."
"Did I show you the new trick we learned to wash his mouth?"
The bottom line is to talk often about WHAT you're doing and WHY so that it becomes the new norm. If they see you doing things a certain way and understand the meaning behind it, they'll be more apt to do that themselves when caring for your child.
PRACTICE G TUBE CARE ON A DOLL
Click on over to our previous post about this helpful tubie doll tutorial to make your own practice doll at home. This is a great way to gain familiarity with the g tube button, the care associated with it, and especially the dreaded button changes. Having the doll around has helped me give tutorials to care givers, but has also been really helpful for both of my sons. It brings feeding tubes into our every day lives and raise awareness for them in their world of play.
Many of our family and friends have noted that their biggest concern about being alone with our tubie is that the button will be pulled out. We've had our primary caregivers gain confidence with our child by practicing or assisting with a button change. Be sure to refer to the previous blog post about helpful Tips for Parents with Wiggly Little Ones for ideas on keeping the child content during a button change.
It may be nerve-racking the first time, so I recommend having them do all of the steps except pushing the new button in. You can work towards that as a goal for next time. Work in baby steps and celebrate any effort made to help care for your child.
LEAVE PLENTY OF NOTES
My husband and I took our first big trip without kids to Nashville to go see one of my favorite bands, Bon Iver. We felt guilty leaving and nervous about it for sure, yet were so in need of some one-on-one time together to have some fun. We depended on several family members to 'take turns' with our kids, which was helpful to view our time away in 'shifts'. We put together a helpful troubleshooting guide for the Enteralite Infinity Pump. This became a great resource for a long trip away or a quick grab & go guide for caregivers. You can list your emergency information, medications, and other important notes as well in this handbook we put together. You can download your own free printable copy here (This may not always be free so snag your free copy while you can). Print a few copies to have by your supplies so you can grab and use (there are blank spaces for you to fill in your own tubie's info/dose/rates).
LEAVE ITEMS OUT & VISIBLE
If your child prefers and/or is able to eat specific foods, put them in baggies out on the counter or stick a post it note out if it's in the fridge. If you prep the food ahead of time, you won't need to worry about it being done 'just the right way.' Any inhalers, medications, etc. should be left out as well. I tend to do this even on days I'm home with him because our days get busy and If I see all of what Arlo needs, I know I won't forget about it. Note: Leave a blank note pad or white board for your caregiver to check off medications and feeds as they're given to keep track.
CHECK IN + GIVE CONFIRMATION
Give your caregivers a call while you're away to check in. I tend to do this right before or after I know a feed needs to happen to calm nerves or confirm that things went well. Anytime there's trouble with the pump (which can be referenced in the printable handbook as well), I always remind the caregiver that I've made that same mistake before to and that the milk is "food not medicine" and that it's okay if they didn't get the perfect amount.
Try to make a follow up call after the fact to thank your caregiver and confirm that they did a great job and will be a pro before they know it.
Learn who makes up your village. Lean on them when you need help. Sometimes you don't realize how necessary these little breaks can be until you take them. And remember...
It's going TUBIE okay!