The Doc's popped into the room and said, "Dylan are you ready to go home today?", he was like "yeaaaaaaah". They agreed and told us his labs had come back down and stabilized enough to satisfy there criteria to continue this journey out of the hospital setting and if we were ready we can start to pack up. Amber and I were so relieved and honestly scared at the same time. It had only been 8 days and our transplant hospital stay had come to an end but this process was far from over. Part of being able to check out of the hospital is showing the team that we as Dylan's parents are fully prepped to continue his care and medicine regime. Amber was sent off to Redwood City (about a 15-20 min drive) to go fetch Dylan's many meds from Kaiser, did I say many? I should reword that as a truck load of meds. It is unreal what is needed to keep things going, literally its a full time job of keeping track of when, where, and what is due. Amber finally made her way back to the hospital and showed the team all the proper meds and we were officially free to go.
As we headed down stairs and into the car, it was an amazing feeling...we had spent 5+ years in anticipation of these last week's events and it was coming to an end. We rolled down our windows and took in the fresh air, turned on the stereo and "Train - Drops of Jupiter" was playing in my car, Dylan started to sing (for those who don't know, he has an amazing voice and a knack for hearing/learning songs) and I was succumbed to emotions. I can't believe we had already come/gone through our hospital stay and our second phase of life was about to embark...
We made our way to our temporary living arrangements and it felt so good to just be together as a family again. Things were very different but just being in each others arms, air space, and same central location really felt good. Amazing how just a few short days ago we were hearing terms of "status 1A", "liver transplant #2", and here we were 48hrs later having dinner together...simply beautiful is what it was. The night was finished off with attempting to head to bed early, as we had to be back at the hospital by 7:30am. Dylan will have follow-up appointments and lab draws nearly daily for the next few months.
We headed to the hospital bright and early...ONLY to forget the standing order lab slip, ugh, what a pain. Amber headed back to grab it and quickly rush back for Dylan's lab draw. Eventually all worked out and Dylan had his needle stick for the day, which by the way he is not too happy about. This whole process has really made him very angry, not trusting of others, and unsure of what people's intentions are. Rightfully so, he has been through a lot thats for sure.
We decided to make our way to Target and get some stuff for daily living and make our place a bit more comfortable and more like "home" feeling. We quickly realized that our lives are going to be far from normal. Dylan is just so agitated and uncomfortable, he also doesn't like that he has to wear a mask in public and have a bile bag (this is very similar to a colostomy bag and is worn on his hip, its attached to his biliary tree to visually see bile color/flow), this will be removed in a few weeks and the line will stay in for up to 3 months. Dylan's meds are also very tedious and very often. We are accustom to Dylan taking a lot of meds but we had our old routine down and this new one is just a bit different so we have a learning curve to overcome. Furthermore, Dylan is not wanting to take his meds and it just breaks my heart that its yet another item that he has no control over and he MUST take on time every time. We found ourselves in the parking lot, in the rain, with Dylan having a break down and Amber trying to tell him why he must take his meds at that moment and to stop fighting her about it. For me it was just too much, I started to cry and just got really upset...I just want him better and I know this process is essential for him to do well in the future.
Dylan is currently taking about 20-25 doses of meds per day right now, the anti-rejection alone has very strict guidelines around it, which is no food/drink 1 hr before and no food/drink 1 hr after. I know there is light at the end of the tunnel but it seems so far away. In about a month's time he will have about 5 doses removed, in another 3 months time a few more. In about 1 years time the goal is for only 2 meds. 2-3 years out the hope is he is only on the anti-rejection meds and ideally a very low dose. The fine balance between our care for Dylan and how we give these meds and the medical teams ability to balance these drugs will determine Dylan's future. It's such a long and tough road in front of us, all I can think of is the present but I dream of Dylan's future...it brings a lump to my throat each and every time.
Please keep Dylan in your thoughts, this road we have traveled down has just begun.
*We receive all your comments and contact (email) entries, please know we take each and every one of these to heart. We will be responding to the hundreds of emails over the course of the next week or so. We have not forgotten about any of you and you will hear from us real soon, we just needed a little time for things to settle down before we can respond to every individual person who has taken the time to send us an email.
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