Our New Year's Eve was like most, hanging with family and just enjoying each's others company. At around 8pm Dylan seemed a bit irritated and not like his joyful self (we noticed it very quickly b/c his 2 year old cousin was here and he was being very irritable, which is never how he is with her). Amber quickly touched his forehead and noticed he was extremely hot, a quick gauge on the inner ear thermometer showed he was just about 100.5, this was troublesome b/c this literally just appeared out of nowhere and to top it off Dylan NEVER gets temps, and if he does its never a good sign. Our threshold pre/post transplant with temps has always been 100.5...this is a critical temp to start watching like a hawk. Being that it was NYE, we wanted to make sure Dylan was ok and comfortable, so we gave a dose of Children's Tylenol, which within 45 mins had his temp back down to normal (as expected). In addition to his temp he had a fairly bad rash all over his body and it seemed to be getting worse. I during this time had grabbed the phone and called the Stanford transplant team to discuss what was going on, being that it was the weekend and a holiday weekend I chatted with the on-call pediatric liver specialist. I was advised that they weren't overly concerned, she mentioned she had reviewed Dylan's labs from about 4 weeks ago and all looked well then, she mentioned that we did the right thing with Tylenol and just to monitor it and maybe come to clinic in 2-3 days if things don't get better (which would of been that coming Tuesday....3 days away). Our night was nothing extravagant, not like we are out getting smashed, those days are long over and thank god for that, as our night was about to take a turn for the worse.
At around 3am we awoke to Dylan making grumbling noises, Amber yet again tested his temp and to our dismay it was now at 102.5. This had us literally pop up out of bed, rush to get more Tylenol in him, and monitor him over the course of the better part of an hour to ensure his temp came back down, which it did. At just before 6am, the same noises could be heard from Dylan again. We tested Dylan's temp and astonished it was back up to almost 103 now, this had me calling the doc again. While on the phone with the doc I continued to advise her how much fevers are very terrifying to us, as in the past they have only represented very bad signs that something bad was going on inside Dylan's body. Now that he is no longer pre-transplant and is now post-transplant, we don't know if those fears should be viewed the same...so we heavily rely on the influence of the docs to ensure we make the right decisions. The on-call doc said that she felt giving Tylenol again made sense and that she would call Dylan's Stanford GI doc and get back to us. At around 8 am, we received a call from the on-call doc, she advised us that she chatted with Dylan's primary GI doc whom agreed that Dylan should be seen at the hospital. They also advised that they had cleared the way for us to not have to go through the ER and go directly to the 3rd floor (this is the floor that houses all the very ill children at Lucile Packard Children's Hospital, and the same place where Dylan was after his transplant. So here we were, not even 8am and we needed to travel just about 2 hrs away to get Dylan to the hospital; to make matters worse, we have a brand new 2 week old baby and don't have our house, our laundry, or really anything completely in order as Christmas was just a few days prior and not to mention Amber had just given birth as well. Life was a bit on the chaotic side to begin with and now we needed to pack a bag (just in case we had to stay the night) and get on the road ASAP. Dylan's fever was again climbing and now was hovering in the 103 range. We quickly put a bag together, fed our 3 dogs, showered as fast as we could, and bolted out the door. It was now a bit after 9am. The trip to Stanford is typically a 1:45 min drive or 3 hrs depending on traffic, being it was the now New Year's Day, the roads were empty and allowed us to make good time. But while in the car Dylan's ever now spiked to 103.7, we didn't want to give anything that would interfere with the docs plan so we just rushed as fast as we could to get there. I'm not overly proud to say it but we made really good time, it only took about 1:15 mins to get to the hospital and that was 100% related to my driving and the speeds I was traveling to get my family in a safer spot. This was a really scary thing to watch Dylan being so ill so I did what I needed to do.
Once at the hospital we advanced directly upstairs to the 3rd floor and were fairly promptly greeted by Dylan's transplant GI doc (whom happened to be on call in the hospital but was just getting off). He mentioned they would run some tests and see what the outcome of those tests were. Dylan was very uncomfortable and appeared to being taking a turn for the worse but we knew he was in the right spot for care. Hour after hour we sat and waited for an update on Dylan, they were constantly coming in and doing vitals but no fluids, no IV, no real plan was given to us as far as treatment goes and/or what they felt might be going on. At around 1ish they came in to take labs, we told them to just go ahead and stick an IV in, just in case he needs it later (might as well only poke once then have to do it all over again later on). The nurse agreed and started the IV and drew his labs. Again, hour after hour we waited and waited...they had at least started fluids in Dylan b/c his urine test showed he was a bit dehydrated but nothing more had really been mentioned in regards to what might be going on with him. Now it was 7ish at night and we requested the lab results from earlier. Not all of them were ready but the main ones that test his liver functions and Blood Chemistry were in. Once we got these labs, our jaw hit the floor, all of Dylan's liver functions were elevated and very high, in addition his white blood cells were extremely low (this count was only at 1.2, and his absolute neutrophil count, which is the bacteria fighting cells, was at 0.2 = 200, CRITICALLY LOW. For those that aren't familiar with lab values, thats a figure that made us almost hit the floor. Normal range is 4-8k. Dylan was also looking yellow to us and it made sense, his bilirubin showed it was really elevated. In addition his synthetic functions were all terrible, his ability to clot blood and process proteins was significantly compromised). At this point nobody even had discussed these labs with us, we were deciphering them ourselves b/c we hadn't seen a resident in hours (on the weekends typically there isn't the whole transplant team around, most often its residents, whom refer up to the fellows for advice). It was then we called Dylan's GI doc at Kaiser and went over the labs with him, he was very concerned and advised us to get the nurse immediately and advise them he needs IV antibiotics NOW. I went and grabbed Dylan's nurse and got really snippy with her, saying this isn't right, we hadn't seen a doc yet to discuss these labs, have anyone discuss a plan with us nor had Dylan gotten any better. I told her we had to contact our doc at Kaiser to discuss a plan of action and that he advised he needed antibiotics ASAP. Its not to say that the antibiotics were going to fight whatever he was going through but it was to prevent a secondary infection if he was to get one, being as his WBC's were so critically low. At around 8ish, Dylan was started on IV antibiotics and more fluids. Dylan continued to have an extremely high fever in the 103+ range. Time continued to pass by and by this time it was now 1am. A resident came in to do more tests, this time it was to be 3 nose swabs and 2 throat swabs. I had no choice but to ask why this was happening at this late hour, as he had just fallen asleep. The PC way of explaining it was that it didn't get relayed properly from fellow to resident and by the time they got on same page it was now 1am. So Dylan being extremely ill, tired, and emotionally drained he was now being forced to have swabs (which look just like pipe cleaners) up his nose and way back in there, as well as big Q-tip looking items in the back of his throat making him gag. We understood this needed to be done but the hour of which it was happening just seemed ridiculous to us but none the less we pressed on and forced Dylan to get it done and over with, as we of all want answers and this should bring us one step closer. Now it was 3am, a nurse came in and advised us that Amber needed to leave b/c she's not allowed to spend the night with a baby. To say this lightly, we were dumbfounded and completely caught off guard. Where is she suppose to go? Its 3am, are you serious? It was very hard for Amber to leave. She has always been by Dylan's side when he is sick and now she was forced to leave. Needless to say, Amber had to spend the night in the car with our 2 week old baby in the approx 30 degree weather outside (she ran the car for hours just to stay warm). This was one heck of a day, never had we been through so many emotions in one day. From down right fear for Dylan's condition, to lack of communication, to the insane protocol of the hospital not allowing a mother and her newborn to be by her ill child. I can say we felt nothing shy of defeated.
Monday was upon us, which was a national recognized day for New Year's. So it was another day in the hospital that was more or less like Sunday. Not to call these folks "B team" but its not the experienced transplant team whom has dealt with Dylan in the past (don't get me wrong, I'm not saying these folks don't know what they're doing but its not the same level as people whom have being doing this for a lifetime, these folks are fresh out of school...qualified but not the same as the others). Monday came and went with very little change in Dylan, it was a round the clock of Tylenol/Motrin being alternated to keep D's temp from being in the 103+ range. More labs, which showed wasn't any better than the day before, some were even worse. His blood cells that were at 200 were now at 100, now EXTREMELY LOW. In addition his Albumin (protein processed by the liver) was extremely low, this was most likely due to the bolus fluids he was receiving. They also started Magnesium infusions, as Dylan's was very low. In addition, an Ultrasound and Chest X-Ray were done as well. The Ultrasound showed his liver and spleen were slightly enlarged and the Chest X-Ray showed a small amount of fluid around his lungs (but wasn't alarming). Infectious Disease also came in to review Dylan and get a look at him. The balancing act continued all day, with no turn for the better from Dylan. That night Amber left around 11pm to go spend the night at my cousins house, which is nearby. Unfortunately she couldn't get in, the lock on the door wasn't cooperating with her...I'm sure being exhausted and having a 2 week baby on her arms wasn't helping any either. Amber had to return to the hospital and watch Dylan while I jumped in the car and went to the house to attempt to diagnose/rectify the problem. At around 1am Amber was finally able to get inside and finally rest in a bed. I on the other hand was dealing with Dylan whom was at this point the worst he had ever been over the last 2 days. The temp was still very high and they changed to a different antibiotics in an attempt to ensure they had a broad spectrum of medicine to cover any secondary infection. Dylan awoke around 4am and called for me. I laid on his bed with him and out of nowhere he said to me, "you will always be my daddy". Seeing him this sick and in this state, I can honestly say that I have never been so scared in my life, why is he saying this to me, does he know something I don't? All I could do is break down in tears and think: God, if there is such a thing, please watch over him, make the pain go away, please heal him....I need him, the world needs him. The night closed out with again zero sleep on my end, I feared closing my eyes and not hearing him in a timely manner. Amber arrived early that AM and Tuesday was already just another blending of Sunday/Monday.
Tuesday finally saw our familiar transplant docs. The consensus was that they weren't sure as to what was going on other than they felt all signs were pointing to a viral infection but no idea as to what. And as of this moment all the pending tests were still not back yet, this was most likely due to the fact that we arrived on a Sunday and Monday was a holiday, so we still had a few more days before we found out the results of those items. Infectious Disease had been in again to access Dylan and they felt he didn't have a viral infection but weren't sure. Meanwhile this whole time Dylan is on Isolation and droplet Isolation, this means anytime someone enters the room they must gown up and wear a mask/gloves. No skin-to-skin contact from caregivers were allowed (this is done to help eliminate the spread of airborne ailments from room to room. Remember his WBC's are dangerously low so they want to ensure they don't bring something into his room). The big changes on this day was they removed Dylan's antiviral medication he is on, this is just in case he is having a medication induced toxicity (which all signs pointed towards it wasn't that but they were just covering all there bases). The team also ordered a MRI and CT Scan for the following day. So Dylan would need to fast after midnight. The rest of the day finished out like the rest, no big ground breaking changes, although some of his labs had gotten better (which was a nice bit of news) but still no understanding as to what was causing this in his condition. Later around 2am Dylan awoke again and asked me to come over to him, which I did. Dylan seemed very out of it and was almost in a delusional state. He asked me, "if God would have to take him away to heaven to fix him", I asked him why he would say something like that. He said, "well God takes babies away from people, why wouldn't he take me away", I broke down a bit and advised him he needs to focus on feeling better and nothing else. He went back off to sleep and yet again I laid awake in fear about his condition. I knew today was going to be a hard day due to his inability to eat with the NPO status because of the MRI/CT scan that was going to happen.
Wednesday started like the last few days, which was labs but nothing to eat/drink was allowed. At around 9am one of the very nice Physicians Assistants came in and said that they couldn't get the MRI in today so he could eat/drink for a little while longer but had to fast prior to his CT Scan that day. Dylan was a trooper, he did the CT Scan with no sedatives and was very brave. Even though these scans are fairly easy to do, that's not always the case with fidgety kids. I had made the decision to head into work as my job really needed me for at min a few hrs, just to catch up on the weekends online orders. As I headed back into work and spaced out on all that was going on , I ended up getting a speeding ticket...which was just a nice topper to all that has been going on as of lately. Needless to say, we got through the day and prepped for a long Thursday, which is when the MRI was now scheduled for.
Although this is good news, and we were happy to finally be leaving the hospital, its also a bit concerning that something unexplained attacked Dylan so badly that he was literally fine one day and the next was severely ill. In all the years, pre and post transplant...we have never seen Dylan as sick as he was. Its a constant reminder of how fast things can change. Our 5 day stay in the hospital had now come to an end. In comparison, when Dylan had is liver transplant he spent 8 days in the hospital. Goes to show how serious this was.
I have to admit its challenging to live in the hospital but I look around at a lot of the kids and I see there folks carting them around in wagons down the halls, they're wearing masks, some/a lot with bald heads....life can always be worse for sure. I'm grateful that we are treated here, that they are doing what they can (even though its very slow process), and that Dylan has a home away from home (all the nurses/docs remember him from transplant and they truly care for his well being). This is no life I would wish on anyone though but for those that can relate to this, all I can say is, its humbling to know what others sacrifice for the better life of these children (which includes Dylan). I walk downstairs in the hospital and read the plaques of the folks who donate/contribute and give life long estate donations to the amazing place that Lucile Packard Children's Hospital at Stanford is. I wish I could do more for this place and for the kids that have the unfortunate luck that brings them there. Even under all this stress and wanting answers for ourselves and Dylan, I can't help but feel blessed by such amazing individuals that have now graced our life. This place will forever be a second home to us, this place saved Dylan's life just 11 months ago and I know we will have a life long struggle and need for them in our lives forever. Thank God they are here and the dedicated folks who do it.