This past June Dylan had his 13th birthday, which is still hard to believe that we now have a teenager - and yes, he acts every bit of it at times, ha ha. But none the less, very grateful to even be able to say those words. This past summer saw our usual routine of hanging out, a camping trip, Dylan went to transplant camp, and more medical stuff.
Even though we were told by Stanford we could go a year until the next labs were needed - over the last 6 months Dylan has had 7-8 sets of labs done. We wanted to be able to go the distance but it just wasn't possible and likely was unrealistic on our end thinking it was going to happen...so we made it almost 6 months, which is about 2 months longer than it had ever gone.
The reason he's had so many sets of labs in a short time frame is they came back elevated. I know we have mentioned before about Dylan's roller coaster ups/downs but nobody has ever figured out why it happens. With any inflammation like this, its not good to have. It eventually leads to permanent damage and at some point, he won't bounce back as easily from it. Its concerning and we want it figured out.
We can't help but still feel that Dylan's immune system, more specifically, his allergy marker cells are the culprit. Every time his labs are elevated, his Eosinophils (E-O-Sin-O-Phils) are through the roof. For most people, Eo's account for less than 5% of your white blood cells - for Dylan - Its not uncommon for his to be 20%+ and he rarely drops below 10% range. In addition, every time they have done a liver biopsy, they have always found Eo's in his liver (which isn't normal and they shouldn't be there).
First set of follow up labs were good, then the next set had his liver enzymes elevated again - back onto the roller coaster we went and again with no rhyme or reason to it. This roller coaster of hepatitis his been ongoing, we have mentioned it over and over on here. In addition, Dylan has been suffering from severe stomach pains when he eats, which has also been ongoing.
Dylan had an ultrasound at Kaiser - and no issues were located or notated. Being as this has been ongoing, we pushed for more answers, which finally had gotten to a point where the powers that be at Stanford were finally willing to attempt to see if they could track down the source of this.
Amber and I's initial thoughts over the years were: 1- Eo's are rampant in his body and perhaps this is causing issues in his liver/gut making his stomach hurt and liver enzymes to go haywire with no other obvious symptoms. 2- Other thought was perhaps he has a stricture at his bile duct and its causing pooling. 3- Last thought and one we've gravitated to more and more as of lately is that his connection from his transplant (roux-limb) is either stretched or kinked - which could just be from growing but if this was the case, it would require a revision surgery to correct it. At this point, we just want to know what's causing it and how to fix it - as the constant up and down of liver labs (hepatitis) is not good for long term and at this point its been going on for a very long time.
Stanford decided the best thing to do was a MR Enterography (which is a special type of magnetic resonance imaging (MRI) performed with a contrast to produce detailed images of the small intestine as well as being able to see bile ducts and vessels). This test was performed this past week and although we had high hopes of getting detailed answers - unfortunately we'll need to wait longer. I don't want to talk poorly about the process but I can only assume the technicians day wasn't going as planned and it trickled down to Dylan's visit as well. From rescheduling the original appointment time, to being asked to be early, to waiting hours on end, a failed IV attempt, to drinking 1500 ml of contrast in an hour, to waiting hrs in a pre-treatment state, to procedure taking 2x as long, and Dylan having to be fasted this whole time. Long story short - by the time they went to take the images of the roux limb....it was too late, the contrast had already worn off. In addition, Dylan states he more or less blacked out, as he doesn't recall his whole time in the MRI tube and almost has a form of amnesia from the day.
Stanford decided that its best for Dylan (mentally) to wait until after the holidays until they attempt this again. So the plan is in 3-4 weeks he will get labs, go back and they will attempt the MRE again, and if labs are elevated at that time they'll be doing a liver biopsy too..
I can't express how frustrated we are, perhaps in the end it wouldn't of made a difference but just sucks Dylan had to go through all this prep and it was basically for nothing.