Tuesday, April 12, 2011

A New Plan

Today was quite productive in getting a plan put in place for addressing Keegan's GI problems.  We started bright and early with a phone conference with our team in Boston.  After tossing around some ideas with our GI doctor there, he contacted our doctor here in Dallas before Gray and I met with him this afternoon.  It was agreed that Keegan is best described at this point as being in intractable intestinal failure.  We have decided to do all the major testing that needs to be done and/or repeated here before actually making the trip.  This is a wonderful development.  We will be able to do all the testing and anesthesia at the comfort of our "home" hospital with our trusted anesthesiologists.  We will be home together for Easter, and we hope that this collaboration between different experts will enable us to stay home through Audrey's birthday.  If we are still at a standstill at the end of all the testing available here, then we can travel, knowing that we won't be wasting time waiting for procedures there that could have been done here.

The first thing we are going to do early tomorrow morning is an abdominal x-ray.  You see, the child who has had chronic diarrhea his entire life has now been constipated for four days.  This is the fourth time in the last four months Keegan has had a drastic swing from extreme diarrhea to constipated.  Unfortunately, we know that what is in him is loose, so why isn't it coming out now?  Are we now dealing with some kind of paralysis of his intestines happening now or what?  We will be looking to see what is there and deciding then what the next step is.  This was part of the reason we initially thought Keegan needed a motility expert.  We anticipate Keegan will be scheduled for an upper endoscopy, colonoscopy, small bowel follow-through, and gastric emptying study in the next week or two.  It is possible he may need an MRI of his abdomen or a CT scan after that. 

We are trying to look at this problem that has plagued him for almost four years with fresh eyes, and luckily, it looks like we will be able to start from home for now.  What frustrates me is that, once again, it seems we had to threaten leaving to get action.  We will take what we can get for now.  Being TPN dependent and the need to have more immunosuppression options available to us, puts fresh urgency on "solving" the puzzle that is Keegan.  We have not ruled out the need to travel to Boston or Cincinnati for testing, consulting, or working with an interdisciplinary feeding team.  We're just hoping to take recent test results with us when we go. 

We're not sure what we will come up with this time, if anything, but for now, we're happy to have the stress of having to coordinate a big move on hold for now.  In other news, Keegan has been tolerating the med change decently so far.  We are pretty sure he is starting to develop some mouth ulcers from the rapamune, but we will have to give it some more time to see how bad it gets.  This morning was quite worrisome, as Keegan literally would not get up out of the chair until almost 1pm.  He asked several times to go back to bed and even once asked "doctor?", like he knew something wasn't right.  All his vitals were normal though, so we held tight.  I dragged him to therapy around 1:30pm.  He fell asleep in the car, but by 3pm, he seemed to be acting much more normal.  Who knows what was going on, but it was nerve-wrecking to say the least. 

We will update tomorrow after we get the results from his x-ray and know what steps will be scheduled in response.  It will be the beginning to a long day with his monthly day admittance for his infusions, labs, needle change, and breathing treatment too.  We just can't repeat enough how much your prayers and words of encouragement mean to us.  I can't possibly imagine doing this without the reassurance that Keegan is constantly being lifted up in prayer.

We don't feel as if we've had a chance to catch our breath or get a grip on anything in regards to Keegan's care in the last six months.  There are so many aspects of his overall picture that are changing, and unfortunately, not in the positive way we would have hoped.  The next six months are going to be just as strained with a renewed assessment of his intestinal issues, immunosuppression medication challenges to protect him from rejection, and perhaps most anxiety-inducing, repeating his kidney function testing.  I have so much grief and at times, pure agony, built up in me as we walk this newest challenging road.  That is a post for another time though.  For now, I take comfort knowing that we will be in our own home at least for another few weeks.  Thank you again for lifting us up through this difficult process.  More tomorrow as we take the first steps.  Thank you.

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