It was quite a shock to receive basically positive news from the surgeon and a bit of a disappointment that we did not find the smoking gun we have been trying to identify for so long. I was insanely hopeful that Joshua's chronic pain would be resolved after the surgery and this has not been the case, unfortunately. I am also concerned that the dilated loop of bowel seen in the X-ray is still present, but only balloons up when Joshua ingests something according to the radiologist reading the X-ray. Since Joshua was not allowed to eat for 12 hours prior to surgery, the questionable loop of bowel was not dilated like it gets after he eats when the surgeon went in. That is, the bowel loop is still getting dilated every day after food consumption for a reason we are still not aware of. Another disappointment from the surgery is Joshua is no longer eligible to participate in the drug trial we were preparing to enter him in. The trial would have had us traveling to Cincinnati 11 times in 16 weeks which would be exhausting, but he would have been fully evaluated by a new GI team and been given access to a very promising drug that stimulates bowel adaptation a full two years prior to FDA approval. I was very optimistic the drug trial was going to be the push Joshua needed to get him over the hump with starting to reduce IV fluid intake. Sadly, this option was eliminated since the trial is in its last phase and will not accept patients that have had surgery in the last 30 days so Joshua will have to wait two whole years before receiving the new medicine (if he even needs it by then).
If a stricture isn't causing the dilation, the next most likely cause that hasn't been tested for yet is motility issues. Abnormal motility is difficult and invasive to test for and our current GI team has zero experience with motility testing. Luckily an esteemed motility specialist from Cincinnati Children's Hospital, Dr. Garza, moved to Scottish Rite recently and we were able to get an appointment with him earlier this week. I had high hopes that Dr. Garza would be the second opinion we needed to get Joshua back on track with reducing his IV fluid intake (we've been stalled on this since last September), give us new insight into the chronic pain issue, and evaluate his candidacy for further motility testing. The news we got is positive, but does not help us with the current issues all that much. Dr. Garza does not believe Joshua would benefit from the invasive motility testing at this time. Apparently most kids grow out of motility issues so even if Joshua received an abnormal result, the doctor would not change anything about his treatment plan which makes the 3 day inpatient testing seem pretty useless. We did get a few suggestions for new meds to try and the affirmation from Dr. Garza that we are doing everything we can for Joshua.
Our next clinic appointment where our regular GI doc will discuss Dr. Garza's findings with me is on 6/20. At this point, I think our team is basically going to lead me to the conclusion that Joshua is just going to have to live with the pain that wakes him up several times a night and hopefully he will eventually grow out of it. This is not the answer I am looking for and would be completely unacceptable to an adult going through a similar experience that could actually communicate to a doctor how unpleasant every night is.
Joshua had what I am terming another "allergic event" on 5/20 that had him vomiting profusely. There were a few bloody streaks in his vomit and stool which caused our team to want him checked out in the ER. His white blood cell count was very high, but he didn't have a fever, so I insisted on bring him home even though the wheels were in motion to admit us for a day or two. Based on two similar experiences in April, I knew he would recover from the vomiting and there was no need to keep him hospitalized - he recovers much better at home anyway. Now we have to figure out what is causing these allergic events and why. The first two were in response to a probiotic, this last one was after eating steak (which he has had before). I haven't convinced the doctors, yet, that these episodes are allergic in origin because his symptoms aren't what they expect. I think their running theory is three separate short-lived stomach viruses that set in exactly 2 hours after eating a non-standard food item which neither David or I catch despite being covered in vomit and poop. Seems pretty far fetched to me.
For now, David and I are reveling in the fact that Joshua has been feeling well during the day and has continued to steadily eat and drink more in the last few weeks. We have had a few good weeks in a row and that doesn't happen very often in recent times. Joshua enjoyed a nice trip to Lake Hartwell over Memorial Day weekend. And we are spending as much time as possible in his favorite place - OUTSIDE!
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| I like the box as much as my new water table! |
