Joshua's last clinic appointment was March 7th. We were expecting to receive the great news that his weight gain had continued and it was time to start lowering his hourly rate of IV fluids. This is the first step in slowly weaning down on the fluids over a period of months (or years) until his bowel can tolerate the amount of food necessary to thrive and grow so he is no longer dependent on the IV nutrition supplementation. Unfortunately, we were very disappointed to learn that while Joshua did gain weight, he did not maintain the same rate of growth as the last appointment so the doctor did not feel comfortable lowering his IV fluids. We were pretty shocked because Joshua seems to be heavier and taller all the time, he is still maintaining in the 50th percentile for weight. Having gone through the scare we did last year when we tried to push his system into handling more than it could and the disastrous effects that caused, I do understand that taking a cautious approach is the best course of action. I firmly believe slow and steady wins this race.
At this same appointment, we were talking with our nutritionist about how picky Joshua has become with not eating certain types of foods like meats and veggies. His favorite combination is a cut up banana and a rice cake crushed and mixed together. He will pick through any bites of meat or different colored veggies and put them to the side on his tray. I have a tough time coming up with new options for him to try because of his dairy and wheat allergies and the other list of no-no foods like nuts, all fruit besides banana, soy, and anything processed or with too much sugar. That counts out a lot of foods! I am now that person in the grocery aisle that reads every word of nutrition labels in the search for dairy-free, gluten-free, nut-free, fruit-free, and low sugar items.
After learning about Joshua's new picky behaviors, the nutritionist suggested that it may be time for him to have a g-tube placed to receive tube feedings directly into his stomach. I am incredibly resistant to this idea for many reasons. Joshua has managed to make it this long without a feeding tube which is highly unusual given his condition. Because he has been allowed to eat orally continuously from a few weeks old (except for periods after surgeries), he has not developed the oral aversions that are so common with short gut kids. These can be hugely detrimental and hideously difficult to overcome, requiring years of feeding therapy with varying levels of success. I absolutely do not want to take away any of his opportunities for oral feeding. A g tube is only good for getting an amount of food that Joshua's bowel can process and absorb into his stomach because he won't take it in orally. Another major issue I have is that we have proven from trial and error that Joshua's intestines cannot handle an increased amount of food at this time so a g tube is not indicated for his current condition.
I was determined to prove the nutritionist wrong and get Joshua eating a more varied diet with protein and veggies. I was successful in increasing the size and variety in Joshua's meals adding chicken, eggs, green beans, and corn. He loves to eat, but it is very easy for him to take in more than he can handle and he ends up "dumping" the food out in a diaper without ever absorbing it. This past week he also vomited all over me on Tuesday and Saturday nights during or after his bedtime bottle. Our GI doc thinks he is so full from the solid food at dinner that the formula an hour or two later has nowhere to go. He suggested that we may need to do a gastric emptying study after we get the results from the endoscopy to confirm whether Joshua's stomach is emptying at a normal rate.
So we continue to walk a very thin tightrope attempting to increase Joshua's food and formula intake in order to get him off the IV fluids, but without exceeding his body's capacity to process the increased amount lest we take giant steps backwards with episodes of vomiting, diarrhea, cutting back on feeds, and ultimately weight loss. To say it's an every day challenge is putting it mildly. But, we're doing it... however slow and bumpy the road may be.
We cleared a huge hurdle this week when we finally received Joshua's long sought after renewal for the Katie Beckett deeming waiver. The paperwork battle this year was tougher than last and we were down to our last rejection notice before having to go through the appeal process which I am sure is even more torturous. Letters from me and our GI doctor turned the tide in our favor. Our approval notice was met with immense relief and a grim sense of satisfaction for besting the bureaucratic process this time around. Now I get an eight month reprieve before the battle begins again in November for next year's coverage.
Please keep Joshua in your thoughts this week as he undergoes yet another invasive procedure. Let us hope for the doctors to find the information they need in order to develop a targeted treatment plan for Joshua's condition. Slow and steady win the race - we just need more of the steady!
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