Saturday, November 4, 2017

Eating ALL his food by mouth!!

 Mr Boy is now eating ALLLLL his food by mouth without the aid of the feeding tube!!!!!
 Let me start by saying, a HUGE thank you to all the people who have been steadfast in praying for Mr Boy all his life, and all the doctors who have performed surgeries, therapists who have spent countless hours working on this issue, and special needs moms who have given invaluable advice and support, and all the friends who have patiently listened to me lament about the tube. 

1st grade school picture. Almost 7 years old! 

Now a short recap of Mr Boy's feeding tube adventure most of you already know, and a lengthy description of the how he just reached the finish line!

Mr Boy had a feeding tube at birth until they discharged him from the NICU at 2.5 months old.  Within a month he was back in the hospital due to weight loss and vomiting. He received an NJ-tube as a "temporary solution" which ended up being a 2 year solution. No one could ever figure out the problem despite forgoing my breast milk, and trying every specialty, allergy-free formula on the market.

Daddy built Mr Boy this cart for his feeding pump backpack because he was too little to wear it, but wanted to move around.

Mommy had to follow him around to make sure the tube didn't get stuck or pulled out. We were literally joined at the hip at times.

He continued to have severe reflux and vomited 5-10 times per day for years. Mommy developed ninja-like skills at catching vomit with her always handy wash cloths.

Finally at age two, Mr Boy received a G-tube, much easier to deal with than an NJ-tube.

Around age 3.5 I started feeding him a Blended diet (real whole foods in the blender) instead of specialty formula and his vomiting finally subsided. He was able to eat foods like crackers but was not able to chew and swallow veggies or meats.

In Preschool Mr Boy began eating all kinds of foods no matter the texture, but his appetite was not substantial enough to stop tube feeding. We tried ending feedings but he lost weight and did not consume enough calories on his own to sustain growth. We attributed this to his slow-moving system. 

At age 5, a world renown Pediatric Surgeon, Dr Alberto Pena (whose career and books and medical progress I had been following for years), moved to Colorado and joined the Children's Hospital of Colorado. He discovered Mr Boy had a very large obstruction in his intestines, probably causing the lack of appetite and slow-moving system. He guessed it could have been there for years.  He performed surgery to help fix the obstruction and damaged intestines, but knew it would still be a journey of healing afterwards.

The surgery was a success but despite the continued daily procedures we do to try and help heal the intestines, I still felt like Mr Boy's system was slow, preventing him from being hungry enough to ever eat on his own. He enjoyed eating but just wasn't hungry.  I knew Mr. Boy would always be smaller than other kids, but I always hoped that if I just fed him well enough, maybe, just maybe I could force feed him enough to get him plump and that that would eventually convert into vertical growth as well. I allowed myself to carry all the pressure and stress of his growth. 

This year has been particularly hard in that area, as the gap between the height of Mr Boy and his peers grows larger and larger, and as he is reaching 7 years old, is getting surpassed in height by 4 year olds. The pressure of my responsibility to keep him growing, continued to build. But one day this summer, Dr Pena, who is the Doctor who knows most well how Mr Boy's system operates and how it's slow and inhibiting his appetite, told me, "If I were you, I would stop feeding him in the tube and see what happens. You don't want to be feeding him forever." (I'm so grateful to Dr Pena for having the courage to say that to me.) I thought he, of all people would be confirming my suspicions that Mr Boy would never get off the tube, but instead he was wondering why I was still feeding him at all. 

I was a little flabbergasted, but decided to give it another go. In my heart I knew it would not work, and I would at least prove it to Dr Pena, and then we could move on and i could finally resign myself to the truth. Or somehow it would work and we'd be off the tube forever. I figured it was a win/win for closure for me either way. But Mr Boy would lose weight in the process, precious weight I worked hard to pack on him. We all knew it would take several weeks for him to get used to not being tube fed, feel hungry and begin eating well enough to sustain growth if at all. 

Mr Boy's GI doctor okayed the plan and in June, I stopped all feedings. I was on pins and needles, constantly encouraging him to eat and drink and watching him wither away. He lost 3 lbs, in all and all year he had been finally sustaining 40lbs, so moving back in to the 37lb range made me tense. 

As you can imagine, we were wanting him to eat ANYTHING, so his diet also suffered. Suddenly he went from a healthy diet controlled by his mom via the tube, to consuming whatever he pleased. Pizza, french fries or waffles, for pretty much every meal. I was only concerned with the calories in the beginning: can Mr Boy, when offered anything and everything he would love to eat, be able to grow? If we could solve this question, then we could move on to working on healthy foods. 

We confirmed around August, that he was no longer losing weight, but starting to gain back a little of what he lost, so the Doctors said, "keep doing what you're doing!" Since 1st grade started, we have been working on the healthy aspect of his diet now that we know he's got the appetite and his body has the capability!!! Bribery works wonders in that area! :) 

 Mr Boy is still not back up to 40lbs, but he's doing so well! And we will not have the tube removed for many years to come, just for giving his daily medicines and making it easier for future surgeries and illnesses. But life is so different now that we don't have to feed him through it! I was dreading 1st grade because it would be all-day and I had no idea how I would fit in all his tube feedings, but we solved that just in time! 

I can't express how amazing it is to say it out loud, "Mr Boy is done with Tube feedings!" As it's been such a huge part of his life. His care in general is so much easier (and far less time consuming!) and he is such a happy kid. Thank you all again for your prayers and love throughout Mr Boy's journey.

I almost finished this post without remembering to acknowledge Lord's part in all this. I'll admit that I've spent more of this journey with my eyes on the raging seas around us, than on Jesus who has been in my boat with me all along. Half the time I've been swimming beside the boat just trying to stay alive, much less trusting in my Savior, beckoning me back into the boat. But despite my fickle nature, my Lord and Comforter has been holding me up when I couldn't float. He's been here all along, in the pain and hurts and in the celebrations and victories. So thank you Jesus for all your mercies!!!!
Lamentations 3: 23-24 Great is his faithfulness;
his mercies begin afresh each morning.
I say to myself, “The Lord is my inheritance;
therefore, I will hope in him!”

No comments:

Post a Comment