One Year Can Change Everything
When Garrett was one, he had a g-button place when he had his first muscle biopsy. He had withered from a 98th percentile newborn and one month old to a 16 month old beneath every curve of the growth chart. A year later, he had learned through therapy and time how to eat and drink besides nursing, and so the button was removed. Here is a photo about a week after his first button was removed.
Last year, we found ourselves back in a place where Garrett wasn't thriving. He hadn't grown in a year and a half. If you know much about Mito or don't but can just use some common sense, take a moment to think about how much better a person's body handles stress when it is fit and healthy versus when it is not nourished well. That's the place Garrett landed: not fit, failing to thrive at age eight, once again. Every doctor who saw Garrett would enter the exam room to a cute boy without a shirt on because it was obvious to me he didn't look good. But no one wanted to take the next step. Finally, in Seattle last November, the Mito specialist noted he hadn't grown in over a year and asked what I thought should be done. We had been through nutritionists, GI and all that, but nothing was helping Garrett enough. I said I thought it was time for a feeding tube, and with a confident "Let's do it!" I had the agreement of the doctor I respect the most when it comes to Mitochondrial Disease. We headed home, met again with GI who sent us to a brilliant surgeon, Dr. Curnow, and off we went! Prior to this, Garrett had an appendicostomy in September of the same year, so we knew they surgeon well. The surgeon initially wanted to do a g-tube with the appendicostomy surgery, but the GI specialist wanted to wait and see if Garrett being able to empty his bowels daily would help him feel more like more food intake by mouth. It didn't help much at all that we could see from September to December. So a week before Christmas, the g-tube was placed, and then about 10 weeks later, it was replaced with a Mini One button. He started on an additional 1250 calories in addition to his oral intake of foods, and now we are down to 750 additional calories per day unless it is a strenuous day or he isn't eating well, in which case we can up to 1000 or even 1250 if we feel it necessary. He started off on the pump, but he handled bolus feeding so well that we just pour formula in each time he takes his meds. He uses a food-based formula, Pediatric Compleat.
Below is a before and after that I share to show the difference a year can make. The photo on the left is August 2013 when I checked on him at midnight and found him curled up beneath the covers and lying in a bed that was soiled from the stool he had leaked all day after being constipated for 6 days. On the right is Garrett August 2014 after 7.5 months with the g-button and almost a year with the appendicostomy. I photoshopped some soiled bedding out of the left photo, and since it took me a while to get that done, I didn't share this before I shared another before and after collage. This one takes the cake. This one shows how horrible he looked. Earlier that day he looked this tiny but pregnant as his tummy was so distended from holding 6 days of stool as his colon was not moving.
Many people have asked why he has the tube. That's simple: He cannot take in enough calories orally to sustain growth and development.
Some have asked excitedly when he will be able to "get rid" of it. The answer is probably never. It will likely be a part of his "normal" for his lifetime. This little apparatus has saved his life twice. It gives us access for meds if needed, additional hydration, and life-giving calories. Odds are he will need it in an increasing fashion as time goes on, but for now we rejoice in the help that it is as we are able to wean him down a tad! Miraculous!
Some ask why he needs it if he looks so great! I get it, but just check out the before and after, and you can easily SEE the answer to that one!
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| August 2013/ August 2014 |
As always and above all, I praise God for not only Garrett's health, but for the life of every person who struggles with Mito, each person who prays for Garrett and those who may not even know that in their disbelief of God, their thoughts and well-wishes for Garrett are heard by our Creator!!!
More blogs to come on more great things happening out here in Idaho, especially for our son! For now I will rest my head in eternal gratefulness for the miracle that is each and every child!!!
Godspeed,
Clara-Leigh
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