Casey’s Legacy
Tim and Marty Barnes with Casey.
Tell us a little about your background and Casey’s story.
Before I was lucky enough to be Casey's mom, I worked in tech. My husband and I actually met while working at a startup that created medical scheduling and billing software. I loved working in tech and had a great career focusing on all things database. When Casey was born in 2006, she was our first and only child. We were expecting a healthy baby and had planned to return to work following maternity leave. Casey's traumatic birth had us make some big changes to our plans. My husband continued to work and I was able to stop working and be a stay at home mom for Casey. She required around the clock care, and it was a full time job just managing her appointments, medications, etc.
During Casey's nearly 10 years of life I learned a lot. Mostly I learned what really matters in life, but I also learned a lot of medical things. Nurses played a HUGE role in our life. After Casey passed away I considered going back to work in tech, but it just didn't fit me anymore. I wanted to give back at least some of what we were so fortunate to receive from the amazing nurses that cared for Casey over the years. I decided to go back to school to become a nurse. I had a very specific plan, I was not interested in working with adults, or trying different things, I wanted to work with the most medically complex kids I could find. Right out of school I worked in the inpatient rehab unit for about 1 year and then transitioned to the trach/vent program coordinator role. I absolutely LOVE what I do. The kids that I get to work with, and their families fill my cup in so many ways. I also have the best team I could have ever imagined.
What would you like to share about Casey’s tube feeding journey?
Casey suffered a severe brain injury at birth leaving her with no reflexes (no gag, suck, swallow or blink). When Casey was about 6 she had been on specific formula for many years and they changed from cans to tetra packs. Our DME insisted that everything was the same, it was just a change in packaging, but Casey started to have really bad constipation issues. We kept reaching out to our DME and to the formula company and finally had someone confirm that the Vitamin D had changed. Her GI suggested changing to an elemental formula to see if she could digest it easier and get past the constipation issues. Well, the enzyme in the elemental formula instead caused Casey's entire GI tract to just shut down. Anything we put in she would just throw up right away. We were able to get her to hold down water so that we could avoid dehydration, and then slowly worked up to Pedialyte.
One of Casey's AMAZING nurses had recently had a baby. She kind of half jokingly offered up breast milk since she had plenty extra. At first we thought no, that's too weird and Casey was 6. But we didn't really have any other good options so we called Casey's pediatrician and asked what she thought. She loved the idea and so we gave it a try. Casey was able to tolerate the breast milk and for about three months we slowly started to mix her formula back in with the breast milk until we were back to full feeds. We then just had to make adjustments to her bowel regimen to prevent constipation issues.
Casey was very positional and had what is called a barrel chest, or pigeon chest. Over the years as she got bigger the gtube drifted up and eventually sat under her lower ribs. The tube was angled down and rubbed a painful ulcer (internal and external). We were admitted due to GI bleeding from the internal ulcer, but with all of her respiratory risks we were told repeatedly to make the bad gtube work as long as we could. It got to a point where it was causing a lot of pain and we really could not use it at all.
When we got to the point where we could not use the gtube anymore, we didn't have a lot of options. Redoing the gtube would have required them to remove ribs. The recovery of that surgery would be too hard on her, so that was not an option. We talked about doing TPN and putting in a port. Due to her sensitive skin and barrel chest, there was no where that we could put a port that would have worked. The only options left were to do nothing (not really an option) or to place a J tube. The Jtube surgery was done right before Casey turned 7. It was a really hard surgery and even harder recovery. Casey did get through it though and for the first time ever she started to gain weight and looked really good.
What advice do you have for Tubie families?
Getting a gtube is scary. When they first told us Casey would need one I didn't think I would ever be able to manage it. Sure I fed the bed a few times (don't beat yourself up on that one, we all do it). However, I eventually got the hang of it. The gtube and feeding pump became a good thing, not a scary thing. The gtube allowed my child to eat, to grow, and to be the amazing little girl that she was. There are great resources available for tubies, lots of parent support avenues, and even some ways to make it more fun and less medical. Things like the FreeArm, decorative cloth covers, belly bands, etc can bring a little personality to your child's feeding journey. Reach out to other tubie families, we are all in this together.
How did you learn about the FreeArm?
A friend of mine that is a dietician and local rep for a formula company introduced me to FreeArm. I immediately loved the idea. As a mom I wished that we had one to use for Casey. There were times we had to get creative when trying to hang her feeds on the go. As a nurse there are many times that my patients come into the clinic and I see them searching the room trying to find a place to hang the feed bag. We have a FreeArm in the clinic now that we offer to families when we see them looking around the room. Just this week I had a family that we only see every 6 months and when I brought in the FreeArm for them to use they were blown away. They wanted to take ours from the clinic. I told them that DMES carry them, insurance covers them and they come in an assortment of colors. The family was so excited and we sent an order to the DME right away. This is pretty much the standard response we see from families when they learn of the FreeArm. Through Casey’s Circle and our clinic we have an annual Fun Day for our trach families and we are fortunate to be able to give away a FreeArm this year too. I would not be surprised if every tubie's wheelchair has a FreeArm attached to it in the near future.