I promised to write again, before Aidan wound up in the hospital, and here I am!
We saw GI last week, and talked through what Aidan's been going through for the last few months. All of the pain, the vomiting, the misery, the hospitalizations - EGID families, you know what I'm talking about. Dr. L actually agreed that something is clearly amiss here. CHOP has been admitting him, patching him up, and then discharging him with vague comments about "constipation" and "needing to be proactive" - but without any answers. A year ago, when Aidan completely stopped tolerating his feeds - CHOP placed a GJ tube and called it a day. No one ever really dug into why or what we should do about it.
It was last Winter that all of the trouble really started - and it wasn't until March that we finally got any action out of CHOP. A Gastric Emptying Study was done , and called normal, although he vomited the contents of the world up throughout the test (who decides this is normal???).
Because the study was normal, we decided to move ahead with the change of the G Tube to a GJ tube. It was the right call, and I'm really thankful that we did it - but in retrospect, I wish I had pushed harder at the time to find out what was actually wrong. Subsequent visits to the hospital never really got us any of necessary urgency around this problem - so ultimately, no one ever cared enough about this again to take another look.
Dr L says that he cares now. He's ordered a full scope - upper and lower - with a simultaneously coordinately GJ button change. He was last scoped in May, and there were "some" eosinophils but nothing "too troubling" (I hate this verbiage. It makes me think no one counted.). But something is not right in his poor little body. I don't know what will come out of this scope, but I hope that we'll come to a new direction of some sort.
On the food trial front, we've been working on strawberry for about two months now. I use the phrase "working on" really carefully here - please note that I did not say "trialing" or "eating" - I said "working on". After two months of work with three different therapists, Aidan will now semi-willingly lick slices or chunks of fresh or freeze-dried strawberry. He will also lick the spout of a refillable squeeze pouch, but only if he cannot see any sign of red anywhere near it. During these past two months, one therapist in particular has gotten Aidan to actually swallow a bite or two of strawberry a handful of times. This is always (and I do mean always. I reviewed my food journal this weekend, and it was depressing.) followed by 1-3 days of diarrhea and a hive-like and sometimes bleeding diaper rash. Tom and I have successfully gotten Aidan to swallow bites of strawberries zero times, so I have nothing further to add there.
Nutrition and GI advise that this isn't enough to consider an actual trial, but it's something to be kept in the back of our minds as we scope him. I'm almost tempted to puree some strawberries and tube them in prior to the scope, but with my luck, I'd clog the tube and he'd wind up in the hospital on Christmas Day, or something equally absurd. So I'll keep my strawberries to myself.
CHOP scheduling actually called me on Friday morning to schedule - for December 23rd. Um, no. I'm not doing that. I'm not having a very CHOPpy Christmas, thank you very much. What's your next available?
So January 6th is the big day. It's hard to believe that's really only 3 weeks away. Which means his birthday is even closer than that. The big oh-three.
I do have more to talk about - tomorrow is my first IEP meeting for Aidan - it's been a LONG few months of evaluations, new diagnoses, different service levels, new providers, and sleepless nights while we worry that we're not doing the right thing. Hopefully it's all paying off. Aidan started preschool two weeks ago and he's doing really, really well.
We saw GI last week, and talked through what Aidan's been going through for the last few months. All of the pain, the vomiting, the misery, the hospitalizations - EGID families, you know what I'm talking about. Dr. L actually agreed that something is clearly amiss here. CHOP has been admitting him, patching him up, and then discharging him with vague comments about "constipation" and "needing to be proactive" - but without any answers. A year ago, when Aidan completely stopped tolerating his feeds - CHOP placed a GJ tube and called it a day. No one ever really dug into why or what we should do about it.
It was last Winter that all of the trouble really started - and it wasn't until March that we finally got any action out of CHOP. A Gastric Emptying Study was done , and called normal, although he vomited the contents of the world up throughout the test (who decides this is normal???).
Because the study was normal, we decided to move ahead with the change of the G Tube to a GJ tube. It was the right call, and I'm really thankful that we did it - but in retrospect, I wish I had pushed harder at the time to find out what was actually wrong. Subsequent visits to the hospital never really got us any of necessary urgency around this problem - so ultimately, no one ever cared enough about this again to take another look.
Dr L says that he cares now. He's ordered a full scope - upper and lower - with a simultaneously coordinately GJ button change. He was last scoped in May, and there were "some" eosinophils but nothing "too troubling" (I hate this verbiage. It makes me think no one counted.). But something is not right in his poor little body. I don't know what will come out of this scope, but I hope that we'll come to a new direction of some sort.
On the food trial front, we've been working on strawberry for about two months now. I use the phrase "working on" really carefully here - please note that I did not say "trialing" or "eating" - I said "working on". After two months of work with three different therapists, Aidan will now semi-willingly lick slices or chunks of fresh or freeze-dried strawberry. He will also lick the spout of a refillable squeeze pouch, but only if he cannot see any sign of red anywhere near it. During these past two months, one therapist in particular has gotten Aidan to actually swallow a bite or two of strawberry a handful of times. This is always (and I do mean always. I reviewed my food journal this weekend, and it was depressing.) followed by 1-3 days of diarrhea and a hive-like and sometimes bleeding diaper rash. Tom and I have successfully gotten Aidan to swallow bites of strawberries zero times, so I have nothing further to add there.
Nutrition and GI advise that this isn't enough to consider an actual trial, but it's something to be kept in the back of our minds as we scope him. I'm almost tempted to puree some strawberries and tube them in prior to the scope, but with my luck, I'd clog the tube and he'd wind up in the hospital on Christmas Day, or something equally absurd. So I'll keep my strawberries to myself.
CHOP scheduling actually called me on Friday morning to schedule - for December 23rd. Um, no. I'm not doing that. I'm not having a very CHOPpy Christmas, thank you very much. What's your next available?
So January 6th is the big day. It's hard to believe that's really only 3 weeks away. Which means his birthday is even closer than that. The big oh-three.
I do have more to talk about - tomorrow is my first IEP meeting for Aidan - it's been a LONG few months of evaluations, new diagnoses, different service levels, new providers, and sleepless nights while we worry that we're not doing the right thing. Hopefully it's all paying off. Aidan started preschool two weeks ago and he's doing really, really well.
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