The day started like most, which unfortunately started a few days beforehand of him being super anxious to "be put to sleep". As most can imagine, its scary, its hard, its rough for anyone at any age, but then put yourself in his shoes...one might think, "well he's been through so much, I'm sure this is easy for him and it gets easier with time". Truth be told, its even harder...each time is new challenges and new fears, each time is harder than the last and this time was no exception.
Being that Dylan is getting older, he no longer is the first to be seen (which makes perfect sense as he once was the younger kid who took priority) but it poses its own set of challenges, as it means he goes even longer with no food/water. Being on a high dose of Prednisone makes this even more frustrating for him b/c he's starving and so thirsty. Needless to say by the time it was his turn, which ended up being around 2:30 pm (they were running behind b/c apparently an emergency transplant was done in the middle of the night). He was just really upset and uneasy about having to do this again. As much as I wish I could say we can talk him down and get his feelings settled, truth is who are we to tell him all is well and going to be well and "don't worry, this is easy" and have it make a real impression. Although we do say a lot of those common things, I always make sure to stress more that this is just something he has to do to ensure he is safe and it will be over soon enough. To me that is the proper thing to do, not just fill his head with words for the sake of using words, which to me in essence is lieing to him and I'm not going to do that to him. He is a little man, although a child, he is structured around unpleasant adult things in his rather short life thus far and it seems only fair to treat him as the young man that he is and not just say things to say things. He is very smart and deserves to understand that we understand his fears and what he's about to go through but in the end he has to do it.
As a background, Dylan doesn't use gas induction (he was traumatized as a child during a procedure at Kaiser and honestly so were we as parents), so he opts for them to use an IV with either oral or IV versed ahead of time (this drug is suppose to relax you and more or less cause amnesia) and then they push Fentanyl (pain med) and then the Propofol (medicine that makes you go to sleep). In the OR Dylan was surrounded by lots of people (about 9 people in this fairly small room) , the versed clearly wasn't enough if you ask me b/c he was still super scared and fighting it the whole way. So the doc let him push his own Propofol, so he could be in "control" of him "going to sleep" rather than it being forced on him. Although I appreciate this gesture, it was super hard to watch these big decisions that I myself would find hard to make in his situation. I really do appreciate how the team interacts with Dylan though, they really do attempt to do everything they can to make things as easy as they can. In the end, it just comes down to he's been dealing with this all since day 1, now at 8 years old...he is grown up enough to know things are even more scary and harder. He has to make those hard decisions and be forced to do these things that really no kid should ever have to do but yet he knows he has to.
Upon Dylan waking up in recovery things just took a turn for the worse. In the past, this has just been a slow couple hours of waiting and watching vitals, but this day was different. Dylan was in excruciating pain and screaming "oh my god, oh my god, I'm in so much pain". I looked at the nurse and said this isn't right, this has never happened before and he is in a lot of pain. Dylan is a mentally tough kid, he also has a pretty high threshold for pain as well...its not like him to complain for the sake of just complaining. So I knew upfront this just wasn't right and might I say...very heart wrenching to watch. The nurse keep saying to me that she thinks he's confusing pain for "gas'. I said no, this isn't gas...and to please call the docs. Soon enough the fellow showed up and said he agreed that it was unusual to see pain with a procedure like this, as mentioned before I stated he has never had pain like this after one of these. I asked if anything was different this time and he said "we had to go at a more drastic angle, typically we go at 45* in from the rib area but they need to go way up underneath and almost parallel with his ribs and perhaps this is why", he then added "there is lots of nerves in that location and maybe we hit a nerve bundle". I said that was my exact thought, as I deal with nerve pain myself daily and Dylan was exhibiting nerve like pain issues. They at this point had already given him 2 additional doses of Fentanyl and it had zero affect on his pain, it didn't even come close to denting it. I asked for something stronger like Dilaudid b/c clearly he's in agonizing pain and its not normal (FYI- this is the grand daddy of all pain drugs, roughly 10x stronger than Morphine). The fellow advised me he would call Anesthesia as only they could make that call to administer that drug. In addition to doing the Hematocrit & Hemoglobin lab draw (this is used to check before/after a surgery, its a good marker to see if one is bleeding, basically they look at the differential of before and after), he was going to order a chest X-Ray and Ultrasound to ensure there was no internal bleeding going on (although this was all unlikely, they were just covering all the basis's).
Soon enough Anesthesia came to visit and agreed he needed something more powerful and agreed Dilaudid was warranted. While the orders were being processed X-ray had made there way down and snapped the film they needed. Shortly thereafter Dylan got a tiny dose of Dilaudid (If i recall it was 2 micrograms), it was short lived though...just 10 mins later he was screaming in pain again. The followup dose was easily 3x the amount of that first dose and its what did the trick. Dylan was finally out of pain and just in time for the ultrasound tech to show up. Once Dylan was stable we were finally released to 3 South (Transplant Wing). Only downside was now it was so late the cafeteria was closed and Dylan wouldn't be able to order any food...at this point he'd been without food for 24 hrs.
Once we got to the room I knew it was going to be a long night. We were paired up with a 2 month old baby, from what I understand had just had a kidney transplant. At this time it was time for Amber and Brea (Amber's sister whom we've been lucky enough to have in our lives helping out with our kids while Amber works her new job) to head out, as siblings aren't suppose to be in the hospital past 9 pm. Dylan and I watched some TV for a bit but I couldn't help but overhear our neighbors, whom were clearly upset, bickering, and just yelling at their 2 year old kid, it was easy to tell they were just in an unhappy place at the moment. The nurses had advised them that their daughter couldn't spend the night in the hospital and they would need to find other arrangements. I knew how this went b/c just last year Amber and I dealt with the same scenario. As the couple were working things out it was obvious that this was a new way of life for them and I couldn't help but reflect back on ourselves and recall how challenging and hard it was when we first started dealing with and learning about Dylan and never even grasping the ride of a life we were in for. I wanted to step in and say something, lend a hand or support but I decided it wasn't my place and kept quiet...I tried to think back to my mid 20's being in their shoes and thinking if someone came at me in that moment, I probably wouldn't of appreciated it....so I decided not to be that guy. I can only hope that the couple makes it through this life, its very challenging to say the least and the toll on us as couples is enormous. As we drifted off in an attempt to sleep, it was short lived. Those who have ever been in a hospital know the sounds and constant in/out of the room just never end. Put yourself on a transplant floor and you know that this is an unpleasant means of spending an evening and to top it off the 2 month old was clearly not very comfortable.
Morning came to the Transplant Team (known as the Green Team) to do "rounds", which is where they come by and follow up on their patients. They met with me (Amber had to be at work, so it was just me a Dylan while Brea watched Tegan at my cousins house nearby) and advised that they were going to push for Pathology to get things done more quickly so they can have a course of action sooner rather than later and b/c the biopsy was done so late, they didn't want to wait until the evening to find out what they wanted to do. To my surprise only about 2 hrs later they came back and said, "They saw 2 lymphocytes but 3 is criteria for calling it "rejection". So they can't classify it as rejection but they are treating it as such". They advised he was going to be getting an IV bolus of high dose steroids that day and then we'd be sent home later that day with a high dose Prednisone taper (this new level will be 6x his already high dose he's currently on). He will be due back here at Stanford for clinic and for a long time from here on out (to closely monitor him.
Off the record they said he's probably been in rejection for these last 3+ months from when they attempted to switch his anti-rejection med (which is what we all suspected and the current Prednisone just hasn't been enough to fully get rid of it) and he needs this treatment to hopefully push him past/out of it. This treatment is for rejection, although on paper they won't call it that but are treating for it. So he was administered a high dose of IV steroids (310mg of Hydrocortisone), then will be doing high dose Prednisone taper starting today and tapering daily (60mg/50/40/30/20/10) and back to his high daily dosage of 10mg. There is no end in sight for him being off of this stuff. He is still on high dose of Prograf as well.
Not only have we started over, we are worse off than the day after transplant at this point....it's frustrating but I expect nothing less with this complicated life. We are doing our best to stay strong and think positive, we truly hope the future holds something positive very soon for our little man.