The day that Brady got his feeding tube, was the day our lives changed drastically. Our new routine was quite clumsy at first as my husband and I desperately tried to quickly learn all things feeding tubes. As we celebrate Feeding Tube Awareness Week this week and as we approach Brady’s two year anniversary of having a feeding tube, I have been thinking about how our everyday life differs from so many. This isn't a good or a bad thing. It just is.
Below is the day in the life of our family.
5:30 AM
Unhook Brady from the feeding pump, as quietly as possible while praying not to wake him. Accidently waking him at this time of day means for a very long day indeed. Also, while unhooking him we must keep our hands ever so steady as they fight the grogginess of the early morning. Unhooking him involves removing the Cori-Safe that surrounds the g-tube extension connection to the feeding pump (picture below). Then we have to remove the 1-inch silk tape that surrounds the connection. This may be an unnecessary step, however in the first several months of Brady having a feeding tube, we had several leaks. The tape just makes my husband and I feel better knowing the extension and feeding pump are well connected. Next, we have to clamp Brady’s extension to ensure formula/stomach juices don’t leak out everywhere. Finally, we remove the feeding pump extension from Brady’s mic-key button.
9:15 AM
Start the morning bolus feed. This consists of heating water in a mug and dropping his bottle of formula into the mug to take the chill off. Brady has a sensitive stomach and we have found that warming up refrigerated formula doesn’t upset his stomach as much.
9:20 AM
Start the gravity bolus feed. This consists of taking a tray with all needed supplies including: a towel (for possible leakage), bolus extension, bottle of room temperature water (for flushing tube before and after feeding), medications, and 60 ml syringe (to pour formula into). We had many lessons learned over the first month of gravity bolus feedings. Mainly, we had to learn a trick of the trade that was provided to us from other parents of kids with feeding tubes (not the GI nurses or home health nurse). Our trick is to allow 10 mls of formula to drain per minute, then clamp the extension. Then, unclamp the extension for 10 more mls, then re-clamp, etc. Currently, Brady receives 180 mls per bolus feed. That equals 18-20 minutes to do the entire bolus feed.
 |
| The tray of goodies -- 60ml syringe, formula, water, bolus feed extension and towel |
Noon
Start the “lunch” gravity bolus feed. Give noon medication.
4:15 PM
Start the “dinner” gravity bolus feed. Give dinner medication.
6:00 PM
Mix overnight feed and next day bolus feed formula. This consists of mixing Elecare Jr. Unflavored Powder Formula with water in a big pitcher. We shake the formula for over a minute to ensure there are no clumps of powder that could clog the feeding tube. Then, we measure out the three bolus feeds for the next day and put all of the formula into the refrigerator.
 |
| Elecare Jr. Formula all mixed up and ready to go for the next day |
7:25 PM
“Fireman Juice” Time! This is what we call Brady’s “Budesonide Slurry” mixture. We mix a nebulizer tube of Budesonide with 5 mls of Nestle Quick Strawberry Powder. (Many physicians prescribe budesonide mixed with 5 packets of Splenda. Brady never took to the Splenda, so we had to get creative).
 |
| It tooks us months to get Brady to take his "budesonide slurry". Now he takes it with ease. |
7:30 PM
Start the “hooking up” process. This involves pouring the formula into a 1200ml bag. We also add 3 ice packs around the bag to keep it cool.
 |
| 1200ml bag filled with formula and surrounded by icepacks |
Next comes my least favorite part -- the priming of the pump. I’m not sure what it is about this step that gets under my skin, but it does. Priming is a way to get the formula pumped from the bag and through all the tubing in order to get out all of the air bubbles. The process just takes a few minutes by pushing in the prime button on the feeding pump until the formula has made it all the way through the tubing. Somehow, those few minutes seem like so much more than that.
 |
| The formula making its way through the tubing. |
After the priming is done, it’s time to actually hook Brady up. We take the feeding tube extension and fit it into his mic-key button until the extension is locked in.
 |
| Brady with just the feeding pump extension attached. The end of the extension is laying on top of the disposable mat we change daily. |
 |
| The extension connected to the feeding pump |
 |
| Adding the half inch silk tape around the extension and feeding pump. Probably an unnecessary step - but it makes me and my husband feel better. |
 |
| Adding the "Corisafe" around the extension and feeding pump tubing |
 |
| Last step -- turn the feeding pump on |
Lastly, we turn the pump on and pray for the best. Most nights are calm… meaning there are no episodes of vomiting or feeding pump alarms being set off by Brady accidentally rolling on top of the tubing and blocking the formula from moving through. When this does happen, the alarm on the feeding pump goes off and stays on until the flow of the formula is corrected and reset manually.
Some nights are not as easy. Brady’s stomach might get upset, resulting in needing to be “vented” or unhooked from the feeding pump altogether. When he does need vented, this involves me or my husband unhooking Brady from the feeding pump and taking him to the bathroom where his extension can let out any excess air or formula that’s just not sitting right in his stomach. Brady’s stomach is extremely sensitive and when his EoE is flaring, it doesn’t take much for Brady’s stomach to get upset.
There are nights when I hear the whimper… It’s a special sound that I am totally in tune with and I know in a split second that I need to get to Brady immediately before he gets sick… even in a dead sleep. My husband and I have become quite good at this and can usually get there in time to get him unhooked and to the bathroom in time.
When this does happen, this is a huge success for both Brady and me and my husband because Brady doesn’t have to go through the actual process of vomiting. Although nausea and stomach pain is involved, we can usually vent him with the extension so that the vomit can pass through the g-tube instead. This saves Brady from the pain and trauma of vomiting and the regression that immediately follows. Brady usually refuses food a day or so after a vomiting episode.
It’s a win for me because I hate watching him vomit and the pain that is involved. Not to mention that it saves us from massive clean up in his bedroom. Some nights we just can’t get there in time. We have had lessons learned over the years and we now have a stack of towels near Brady’s bed. Brady calls them the “throw up towels” because we sometimes can’t get him unhooked in time and he simply vomits inside the towels instead. Trust me, it saves a lot on the clean up end.
Then there are the nights when neither of those options quite work. We either think we can get him to the bathroom in time, and when we don’t, Brady ends up vomiting in his bed, bedroom, hallway to the bathroom, or bathroom floor. Those are the nights that are a little more painful because Brady does in fact vomit. We also have massive clean up because the vomit is projectile and goes everywhere. Lastly, Brady gets so upset when he vomits that he can’t stop crying… and that’s where my heart breaks over and over again.
1:00 AM
Pull-up change. Brady pees. A lot. And rightfully so. He’s getting 70 mls of formula pumped into his stomach every hour from 7:30 PM-5:30 AM. He sleeps so soundly that he rarely wakes up to go to the bathroom. If we don’t change his pull-up a few times a night, Brady will pee through
his pull-up and pajama pants. We have nighttime mats underneath him that help. This prevents me and my husband from changing sheets multiple times a night.
Around
4:00 AM
Another pull-up change.
5:30 AM
The start of another day and the life of a child with a feeding tube.
OUR NEW NORM
Our new norm was hard and intimidating at first. My husband and I survived our crash course in all things feeding tubes and had a routine down in under a week. I think it’s safe to say that we have adjusted to life as we know it.
It still doesn’t make it easy some days.
In between the daily routine, my husband and I both work full time jobs and our kids are active. We are on the go quite a bit, and that’s to be expected of a family of four. We also squeeze in one feeding therapy session per week with an amazing therapist, as well as do our own feeding therapy at home. This consists of trying to get Brady to overcome his severe feeding sensory disorder by trying new foods. We view the little things, like Brady licking a popsicle or taking a tiny bite of banana as a huge success.
What does get hard though is the underlying chronic stress underneath it all that can become overwhelming at times.
The lack of sleep is also problematic some days. Although my husband and I take turns checking on Brady every night, it oftentimes feels like we’re in the perpetual stage of a newborn. Getting up multiple times a night for months on end can do a number on you.
As I was going through the nightly routine last night, it hit me. I tucked my daughter into her bed all safe and sound. I read her a book, kissed and hugged her and walked to her bedroom door to turn off the light. Before I left her doorway, I turned around one last time before heading into my son’s room and I just looked at her. She was all nice and cozy in her bed and I knew that I didn’t need to worry about her that night, or any other night for that matter. She was safe and content and I didn’t have that nagging worry that something could go wrong as I left her to her dreams. What a comforting feeling.
I did the same nightly routine for my son, but as I walked out of his room that same ol’ feeling settled in. That feeling I get every night. That anything could go wrong and the incessant worry began to wash all over me. The same worries I have nightly… What if he gets sick? What if his mic-key button falls out? What if I can’t get to him in time? What if we can’t get the g-tube back in if it does fall out? What if… what if… what if.
That is what becomes so emotionally exhausting through this journey. The constant worry. And not just at night. My worries extend into the day when he is at school, on a playground, playing soccer, etc. worrying that something could happen to his mic-key button. That is my life of a momma with a child with EoE and a feeding tube. I like to think I handle it well most days. Some days, not so much.
PROGRESS
We are grateful for the feeding tube in so many ways because it has allowed my son to grow, thrive, develop, and play. Life before the feeding tube was very different for my son. He was failure to thrive, losing weight, weak and just plain sick. He didn’t have a lot of energy most days and his stamina was low. Now, Brady is a happy, energetic boy that went from not being on the growth chart for height or weight to achieving the 35 percentile for weight and 11th percentile for height in just two years time with a feeding tube.
That’s progress and we will relish in it. That’s what makes the daily grind worth every single minute.
 |
| Brady with his Tubie Friend Bear he named "Button". They both have the same mic-key button! |
