Last Friday we had our Upper GI Study (aka Barium Swalllow) to determine whether it would benefit Jackson to have an additional procedure during his surgery to correct reflux. The great news is, no reflux was observed, and he doesn't exhibit traditional signs of reflux so we all decided that it wouldn't be prudent at this time to perform an additional operation. 
This morning we met with our CF Clinic team to discuss moving forward with the surgery. Although we understand that there will be some trial and error in finding what works best for Jackson, we have established a tentative plan for his post-op feeding plan. He will eat normally (hopefully) during the day, and will be hooked up to a continuous drip feed while he sleeps. I can't say I'm not a little nervous about his roly-poly sleep habits, and I may be spending a few days with his bed next to mine to make sure he doesn't gator-roll his tubing. That's another one of those things we will have to figure out as we go.
Wednedsay afternoon we will meet our surgeon. He will determine the best way to place the tube, (PEG, Laparoscopic, or Traditional incision type surgery procedure). Then we will schedule the surgery- the sooner the better. There's no reason to wait, we might as well get on with the healing process and ahead of the learning curve. It's possible we could be in surgery before the week is out, which would be my preference. The hospital stay after the surgery, ideally, is only a couple of days. Jackson can be released to go home once we have demonstrated competence with the equipment and J is tolerating feeds.
I am doing all I can to document the procedures and plan to put together an informational documentary- or at the very least slideshow- of our experiences. I also want to go back and explain in more detail what everything means, why we may decide to go one route instead of another, but right now the volume of things happening is greater than the time allowed to relay the information.
Like all facets of CF life, this affects not only Jackson and us, but his older sister as well. She's a worrier and a nurturer by nature and was very concerned about her brother having to have surgery and something put in his body to help him grow. After seeing another CF mom who had a baby doll with a g-tube for her child, I wrote AMT, the company that makes the Mic-Key & the Mini-One G Buttons to see if they would send us one for A doll for Emily. They very quickly and kindly obliged, and we picked out a special doll to be the G-Tube Baby. Em has become much more at ease now that she can manipulate and explore the very same device her brother will have. I have to say, it was also comforting to me to get some hands on time operating one before it's firmly implanted in my child.
I'll do my very best to update as we go, and promise a full recap after the fact. Obviously this isn't a position we would choose to find ourselves in, but as with all the less than ideal situations that can come with CF, I have high hopes our experience may help someone finding themselves where we are. Until there's a cure, or a treatment that makes CF treatable rather than fatal, it's the best we can do.
Here's to hoping we soon see less of exposed spines, scapulas, sternums, and ribs.
This morning we met with our CF Clinic team to discuss moving forward with the surgery. Although we understand that there will be some trial and error in finding what works best for Jackson, we have established a tentative plan for his post-op feeding plan. He will eat normally (hopefully) during the day, and will be hooked up to a continuous drip feed while he sleeps. I can't say I'm not a little nervous about his roly-poly sleep habits, and I may be spending a few days with his bed next to mine to make sure he doesn't gator-roll his tubing. That's another one of those things we will have to figure out as we go.
Wednedsay afternoon we will meet our surgeon. He will determine the best way to place the tube, (PEG, Laparoscopic, or Traditional incision type surgery procedure). Then we will schedule the surgery- the sooner the better. There's no reason to wait, we might as well get on with the healing process and ahead of the learning curve. It's possible we could be in surgery before the week is out, which would be my preference. The hospital stay after the surgery, ideally, is only a couple of days. Jackson can be released to go home once we have demonstrated competence with the equipment and J is tolerating feeds.
I am doing all I can to document the procedures and plan to put together an informational documentary- or at the very least slideshow- of our experiences. I also want to go back and explain in more detail what everything means, why we may decide to go one route instead of another, but right now the volume of things happening is greater than the time allowed to relay the information.
Like all facets of CF life, this affects not only Jackson and us, but his older sister as well. She's a worrier and a nurturer by nature and was very concerned about her brother having to have surgery and something put in his body to help him grow. After seeing another CF mom who had a baby doll with a g-tube for her child, I wrote AMT, the company that makes the Mic-Key & the Mini-One G Buttons to see if they would send us one for A doll for Emily. They very quickly and kindly obliged, and we picked out a special doll to be the G-Tube Baby. Em has become much more at ease now that she can manipulate and explore the very same device her brother will have. I have to say, it was also comforting to me to get some hands on time operating one before it's firmly implanted in my child.
I'll do my very best to update as we go, and promise a full recap after the fact. Obviously this isn't a position we would choose to find ourselves in, but as with all the less than ideal situations that can come with CF, I have high hopes our experience may help someone finding themselves where we are. Until there's a cure, or a treatment that makes CF treatable rather than fatal, it's the best we can do.
Here's to hoping we soon see less of exposed spines, scapulas, sternums, and ribs.
Amy, thanks for keeping us so well-informed. You're an amazing source of information...such a strong, amazing woman! Hugs to Jackson and Emily! Can't wait to see you all next week sometime!
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