Although I haven’t updated on Lylah lately on the blog, if you “know” me, most of you know that Lylah ended up needing a feeding tube placed in November. In the middle of October we switched her to an all elemental diet which was only elemental formula and apples for a little over eight weeks. (She has Eosinophilic Esophagitis-read about this in a previous post) This was going to be tough, but as always she totally pulled through and not much seemed to phase her. We took all foods away but apples, and our daughter barely batted an eye. Insert tear here. With an elemental diet, we would hopefully get a clean scope and then we would be able to introduce new foods one at a time.
Lylah was to drink 40 ounces of formula a day and eat apples, applesauce, and was allowed apple juice as well. This became tough. 40 ounces of the same thing every single day, gets old. She started getting cranky and looked sick. Pale face, sleepy, and just not her normal, happy self. We made a doctor appointment to check her weight and she had lost almost three pounds from the end of September to the end of October. We made a decision to place a temporary NG tube in her nose the following week to get her weight back up.
On November 2, 2016, me and her made the trip to Milwaukee to get her tube placed. This was rough, I had no idea it would be so painful and uncomfortable. I kept telling her it would only tickle, thinking it would just be an odd feeling for a minute. I never thought about the fact they would have to shove enough tube in her nose, down her throat that would reach all the way to her tummy. The initial insertion was awful and I felt terrible. It took her a bit to catch her breath and be able to breath without gagging. Once it was in and she was calm, she did great. There were a few times she would kind of gag on it but she would take a deep breath and it would pass.
We had to stay the night to learn how to do feeds and take care of it. We also needed to see if she would even tolerate feeds. Everything ended up working out great, she did awesome as always, and I caught onto the feedings pretty quickly as well. After a day and a half at Children’s Hospital we were on our way home with lots of prizes and feeding equipment.
The NG tube sucked, but it got her weight back up and that’s what we needed. We had to change her tape every few days and this was quite the task. It hurt, it was hard, painful for her and as parents you didn’t want to hurt your child. Tearing that tape off without moving the NG tube became our new norm. We had to bribe her, work up to it, distract her with our phones. One night my husband even told her that after we got it all changed she could paint his toenails. 😂 Of course she sat well that time. The doctors and nurses never taught me to check placement myself, so we had a couple incidents where the tube got pulled on and we ended up in the ER for an x-ray. This was something I wouldn’t miss.
In the beginning of December she had another scope and we would remove the NG tube and place a peg tube in her tummy for more of a long term thing. We knew Lylah would need this elemental formula for a long time. It would be months, possibly years until we got enough nutritious food back into her diet that would be enough to keep her healthy without that elemental formula. Just when I got used to the NG, we were inserting a peg tube for three months which would then be changed to a button.
On December 6, 2016 she had her eighth scope and a g tube placement. We had to stay the night in the hospital again to see if she would tolerate feeds this way and make sure everything was well with the new tube. I wish someone had prepared me for those first couple days after the peg tube was placed. When I got to go back to recovery by her, I was so saddened by the way she looked. She was exhausted and drugged. My poor three year old was on morphine! My little girl was in so much pain.
Nobody had warned me how uncomfortable she would be in the next week. She couldn’t even move. She screamed in pain if we had to adjust her for any vitals or anything. She wouldn’t get up to use the bathroom, so she held it. Her tummy hurt so bad she was afraid to even go potty. The night shift nurse told me that if she hadn’t gone potty by midnight, they would have to cath her. Thank goodness when they woke her up to check vitals she had finally went in a pull up. It hurt to carry her, it hurt to stand up, she couldn’t even walk normal. She would stay hunched over and she joked she looked like a granny. After all she had been through her sense of humor was still there. She lived in a stroller while in the hospital. Playing playdoh, reading and munching on popsicles.
She tolerated her feeds great, which was awesome, but the peg tube was something to get used to that’s for sure! Since it ran right into her stomach, it needed to be clamped at all times unless you were feeding. When you opened the actual tube, it needed to be clamped or her stomach would empty out. We have “fed the bed” a couple times, and forgot to clamp or unclamp, but we slowly got the hang of it.
Lylah’s tube will get changed to a mic-key button in April at her next scope. She is doing well and thriving and we have two safe foods!! Apples and chicken. We are currently trailing potatoes and quinoa, and we will find out in April if those are safe as well! I feel like we are finally on the right track and she is such a warrior she makes me proud everyday. She cleans her tube herself, applies cream and can take a tubie cover on and off. She is more brave and strong than some adults I know, and I know that because me and her daddy taught her to be. No disease or tube is going to run her life. We will get a hold on this and she will shine!