Just another day here with Dylan. We are now monitoring Dylan at home for low glucose levels. He seems to be showing signs of hypoglycemia. The docs are now sending us to an endocrinologist for Dylan to be evaluated. I guess they will help determine what the root of this is. I have altered what he is eating to prevent dips in the gluscoes levels which is difficult with his food allergies. Nothing we can't handle though.
Today we went to our well anticipated appointment with Dr. Carlos Esquivel. The appointment went as well as can be expected, Dr. Esquivel was a very professional and very straight forward individual. I finally feel as if my questions have been addressed and answered entirely. With that being said, I'm also very sad to learn that Dylan, as well as us, are going to embark on a very rough road and path from here on out. I don't feel as if the docs gave me any surprises but coming from a parent of a kid with a disease such as this, I've always held out hope...hope that our kid will be that miracle child that will pull through, that he will some how some way make it without having to be like the rest of these unfortunate kids who have to go down this brutal path of transplant.
One of the major things I learned today was that post transplant life may not be all that great, that it may not be the end all be all to this disease, but rather just another phase of it. It saddens me to learn of all the side effects that are related with post transplant children. I can honestly say that I assumed that once transplanted that the slew of drugs Dylan will need to be on will not be all that bad. But quite the contrary, the doc informed us that the medicine to give Dylan a second chance at maintaining life due in fact have very serious and at times deadly side effects. Call it ignorance or just us never diving into the next step that deeply, but this was very hard to take.
The final meeting today was actually a conference with Dr. Esquivel, Dr. Concepcion, and Dr. Cox. This meeting was to ensure that all parties involved are on the same page as to Dylan's care. All 3 docs agreed that Dylan will be going down this very rough road in due time but as to what time they could not guarantee. They did estimate Dylan will most likely need transplant within the next 1-2 years, but were leaning towards the next year or so...BUT again could not say for sure. Seeing that Dylan's medical needs are going to be coming up sooner rather than later, they have decided to start the preliminary work up on me for living related transplant donor.
All-In-All i'm very grateful to the team of docs today, as today was as much positive as it was negative. I'm glad to get answer's to my questions, even though the answer's make this whole ordeal much much more real...I know it sounds silly, this has been real the whole time but when you hear a doc talk about quality of life and post transplant life vs. the potential for death and what not, it's just a very heart wrenching thing to take in. I know in my heart that we have to be strong for our little boy. I just can't help but think of the what if's....I could not live my life without my little boy, he completes my life and makes it worth every breath I take. I don't even remember my life without him
The Journal section of the site will be kept up to date with Amber and Noah's thoughts, feelings, and of course hopes...Thanks for taking the time to read and please feel free to comment.