Its been a little bit since we did a journal update, we apologize for this (we actually are having our home computer fixed and I'm writing this from work) but the main reason for holding off on the update is due to the back and forth we've been going through. We always like to have concrete info to give as an update, in an effort to spare those who read this from the merry-go-round that comes with the territory of this lifestyle we live.
First and foremost...Dylan is doing great, as of last week LPCH has moved Dylan to a 1x per week schedule (tomorrow being our first time going a full week, so tomorrows upcoming labs are nerve racking to say the least). It couldn't of come at a better time though, as Amber and I have been pretty drained driving back and forth and the early 4am starts and midnight closes are taxing on a person let alone a family. To say we're happy to see Dylan doing as well as he currently is would be an understatement. I know I can speak for Amber on this one that we never would of guessed being where we are just 6 weeks ago. Can you believe that? Its already been 6 weeks, time sure flies when the regimen is as tough as this one is. Dylan has yet to be able to come off the Prednisone but we are hopeful that tomorrow might bring a positive change on that matter. The only other issue that has come up is Dylan started on his antibiotic (Septra) and it has caused an allergic reaction on his skin, which he now can't have it, so we are addressing this in clinic tomorrow. But all-in-all he couldn't be in a better place in such a short amount of time, as of last thursday (last labs that were done) his Liver Function Tests (LFT's) were all normal and his GGT was still declining and only in the low 30's (this is one measure of rejection). The Prograf level was a bit low but they don't seem concerned as his liver and body are tolerating it. Tomorrow is a big day to hopefully still see that he is on track to this fantastic recovery he's been riding thus far. Its so hard to be overzealous, as I don't wish to jinx anything...things can change so quickly and we're just grateful for today and his health.
I myself on the other hand have been battling some issues, I guess I cant really say if they're minor or potentially major...but I think its just a minor set back in the whole scheme of things. Long story short, a little over 3 weeks ago I started to develop some major acid reflux and inability to eat a normal size meal or even a snack really; only being able to get about 8oz in me at a time. I had let it go for about a week and then called my surgeon's office. I was advised to switch medications from Protonics to Nexium and to give it a week then give a update. That was 2 weeks ago and I did as instructed, reporting back that I was not any better (I don't really feel any worse but by no means any better off than I was before). The docs set me up last Friday with a Barium Swallow, this is a test that is used to see the inner workings of the GI tract and to see if there is any obstructions, perforations, and/or anything out of the norm. The test is done on a bed with a rather large digital X-Ray machine that records in real time...its amazing to watch how things function and its all live. The Barium drink itself was not too tasty but not all that bad either. The Radiologist who performed the procedure advised me that I have severe Gastritis and the inner folds of my stomach lining is so inflamed that it "appears" to be covering the Pyloric Region and is potentially causing a delayed response in the draining process of my stomach and causing this fullness/pain I have. It was very clear what he was talking about just by looking at it on the screen. I drank 2 full cups of the Barium and he said normally by the time you've taken your second gulp (not cup) that you can see it working its way into the small intestine. The whole time I was there I didn't see, nor did the Radiologist see any/adequate emptying of my stomach. So tomorrow I get to go for a upper endoscopy, they want to get a visual on my stomach and do a biopsy. I'm also on the schedule in two weeks for a Gastric Emptying Test this is where they have me ingest a radioactive chemical and monitor over 24hrs how fast my stomach empties. The surgeon told me this is a known issue from this type of surgery, they say they even warned me of it before hand. Was that suppose to stop me? No way and it wouldn't of regardless.
Its been an interesting 1.5 weeks but I wouldn't change any of this that I got going in lieu of what Dylan's progress has been. I knew the risks when I volunteered for surgery and if this ends up being a lifetime issue, it for sure will be devastating but not as much so as potentially losing our son...The future for Dylan is on the up and up and I will leave my issues to the docs for now and hope that they get to the bottom of it. Its really no fun feeling/being this way everyday. As I've said, it could always be worse!
-Noah
First and foremost...Dylan is doing great, as of last week LPCH has moved Dylan to a 1x per week schedule (tomorrow being our first time going a full week, so tomorrows upcoming labs are nerve racking to say the least). It couldn't of come at a better time though, as Amber and I have been pretty drained driving back and forth and the early 4am starts and midnight closes are taxing on a person let alone a family. To say we're happy to see Dylan doing as well as he currently is would be an understatement. I know I can speak for Amber on this one that we never would of guessed being where we are just 6 weeks ago. Can you believe that? Its already been 6 weeks, time sure flies when the regimen is as tough as this one is. Dylan has yet to be able to come off the Prednisone but we are hopeful that tomorrow might bring a positive change on that matter. The only other issue that has come up is Dylan started on his antibiotic (Septra) and it has caused an allergic reaction on his skin, which he now can't have it, so we are addressing this in clinic tomorrow. But all-in-all he couldn't be in a better place in such a short amount of time, as of last thursday (last labs that were done) his Liver Function Tests (LFT's) were all normal and his GGT was still declining and only in the low 30's (this is one measure of rejection). The Prograf level was a bit low but they don't seem concerned as his liver and body are tolerating it. Tomorrow is a big day to hopefully still see that he is on track to this fantastic recovery he's been riding thus far. Its so hard to be overzealous, as I don't wish to jinx anything...things can change so quickly and we're just grateful for today and his health.
I myself on the other hand have been battling some issues, I guess I cant really say if they're minor or potentially major...but I think its just a minor set back in the whole scheme of things. Long story short, a little over 3 weeks ago I started to develop some major acid reflux and inability to eat a normal size meal or even a snack really; only being able to get about 8oz in me at a time. I had let it go for about a week and then called my surgeon's office. I was advised to switch medications from Protonics to Nexium and to give it a week then give a update. That was 2 weeks ago and I did as instructed, reporting back that I was not any better (I don't really feel any worse but by no means any better off than I was before). The docs set me up last Friday with a Barium Swallow, this is a test that is used to see the inner workings of the GI tract and to see if there is any obstructions, perforations, and/or anything out of the norm. The test is done on a bed with a rather large digital X-Ray machine that records in real time...its amazing to watch how things function and its all live. The Barium drink itself was not too tasty but not all that bad either. The Radiologist who performed the procedure advised me that I have severe Gastritis and the inner folds of my stomach lining is so inflamed that it "appears" to be covering the Pyloric Region and is potentially causing a delayed response in the draining process of my stomach and causing this fullness/pain I have. It was very clear what he was talking about just by looking at it on the screen. I drank 2 full cups of the Barium and he said normally by the time you've taken your second gulp (not cup) that you can see it working its way into the small intestine. The whole time I was there I didn't see, nor did the Radiologist see any/adequate emptying of my stomach. So tomorrow I get to go for a upper endoscopy, they want to get a visual on my stomach and do a biopsy. I'm also on the schedule in two weeks for a Gastric Emptying Test this is where they have me ingest a radioactive chemical and monitor over 24hrs how fast my stomach empties. The surgeon told me this is a known issue from this type of surgery, they say they even warned me of it before hand. Was that suppose to stop me? No way and it wouldn't of regardless.
Its been an interesting 1.5 weeks but I wouldn't change any of this that I got going in lieu of what Dylan's progress has been. I knew the risks when I volunteered for surgery and if this ends up being a lifetime issue, it for sure will be devastating but not as much so as potentially losing our son...The future for Dylan is on the up and up and I will leave my issues to the docs for now and hope that they get to the bottom of it. Its really no fun feeling/being this way everyday. As I've said, it could always be worse!
-Noah
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