Thursday, May 5, 2011

No Go

We started the HGH shots Friday night. Collin started retching again Saturday. By Monday, he was acting more withdrawn and sleepy. So that's that.

We stopped the shots midweek and are in the process of choosing and ordering a preservative-free formulation.

Problem solved, right?

Not so much.

Collin has retched every day since he started on Saturday. In fact, it seems to be getting worse and less likely to be linked with an identifiable cause. One morning, I was watching Collin lying on his side, recovering from a retching spell while he watched his iPad to distract him from the discomfort, and it's like things clicked for me -- not in the form of an answer, unfortunately, but rather as the ability to see the bigger problem. Even though growth hormone aggravated Collin's retching by making him feel bad, it is not the issue. The issue is that I've been seeing that same scene -- Collin curled up on his side, his eyes watering after finally catching his breath and his little mouth working so hard to manage all of the extra saliva from the retching without retching again -- far too often over the past months. It has become the new normal without us realizing it. We've been so caught up in determining what might have triggered each individual spell that we have failed to step back and take in the enormity of what's really going on -- that Collin was retch free for over a year and now he does it all. of. the. time. Something changed and the toll it is taking on Collin and our family is not sustainable. He is missing out on so much. He spends the majority of his time lying on the floor or sitting in his high chair because his meals and water are so slow in an effort to avoid retching from a full tummy. He hardly ever gets through a whole NACD program anymore, which is sad not only because of how beneficial they are for his development, but also because he really enjoys them. We don't leave the house as much because it's so hard to manage retching in public. Kyle doesn't rough house with Collin the way he used to because we're so afraid of jostling him too much. It's just not a good or healthy place for anyone. And it's not HGH or pooping or burps or food causing the problem, because he had all of those things (minus the HGH) for months and months before this started.

So I got in touch with the Aerodigestive team at Cincinnati Children's and we have an appointment with their GI doctor (the same one who saw Collin last year) at the end of May. His nurse called me today to finalize some details and mentioned that while talking to the doctor about Collin's case, he asked her if anyone had discussed with us the possibility of a G-J tube (like a G-tube, except longer on the inside and delivers food straight to the small intestines - a bigger deal in several ways that I won't explain here). He thought it might be a good option in order to give us a break from the retching, since Collin's food would be bypassing his stomach. However, it would mean that he would be continuously fed for 22 hours a day, which would defeat our purpose of trying to get him more active again. I was totally caught off guard by this suggestion, but it did serve a purpose by motivating us to get ourselves in gear and get what we had been discussing off and on this week: a feeding pump.

I was so happy to see the feeding pump go last year. It was one less piece of medical equipment in our house and its leaving brought me closer, in a way, to Collin's meals. Even though there is probably no technical difference, I felt more involved in drawing up and pushing in the food myself rather than pouring it into a bag and setting a rate on an electric pump. So, I wasn't eager to bring something back into our home that might be hard to get rid of again. But the fact of the matter is that, whatever the underlying cause, Collin's retching improves when he is on a very low flow of food and water. And unless we want to spend every minute of the day watching the clock to see how long it's been since the last time we gave him something, we need a pump. Also, it allows us to spread the volume out even more, because we can give Collin the majority of his water for the day very slowly over the course of a night. This means he has to handle much less volume during the day and has a chance to let his tummy empty out and rest between each meal. Kyle used his scary voice to impress upon our pediatrician's office the importance of getting this pump as soon as possible (involves faxing orders, connecting with the enteral supply company, etc.) and it was delivered to our door by 8:30 this evening. We did some quick calculations and had him set up for the night within the hour.

This will not likely solve anything. But with three weeks until we go to Cincinnati, it will hopefully make things better for Collin and let us know whether, if we're going to have to go to continuous feeding anyway, we can avoid the placement of another feeding tube (and the procedure it would require).

Tomorrow is a big day of blood work and neuro appointments and therapy, so we have our fingers and toes crossed for a night of rest and the beginning of some relief.

3 comments:

  1. I don't ever ever want to hear Kyle's scary voice.

    Ever.

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  2. Oh, man... Two steps forward, then back again. I know that motherhood is a process of trial and error, of hypothesis and testing, and you guys are certifiable scientists when it comes to caring for Collin in the big picture.

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  3. I'm reading this Friday night, thinking of you and hoping today's crazy schedule of appointments went well. Lots of love- jessica

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