Good morning everyone and happy Friday to you all. I wanted to take some time this morning before work and try and update you on the information and events of the past couple of weeks for Dylan.

Dylan was able to get a lot of hospital care since the last update, and some results were good but others showed we had a difficult path ahead yet. Upper GI scans looked ok, suggesting there were no healing complications at the surgical sites in her digestive system. However that does not take away from the severity of what happened for her transplant. Obviously there are a lot of nerve connections to organs and tissues that were disrupted by the surgery. As the body adjusts to this, weird things can happen. Dylan struggles with weird sensations in her throat, which can trigger her rejecting food. There doesn’t seem to be a solution to this currently.

Dylan’s physical metrics and liver enzyme levels led to her being readmitted to the hospital for 10 days, to try and help her get her liver back on track and help with eating. This was a really hard time for Dylan and her care team, as being back in the hospital is mentally and physically very difficult for rest and recovery. Understanding that it was necessary, while also understanding setbacks will happen, we were all a bit concerned for how things would go.

The high dose infusions of immunosuppressants in the hospital were able to get Dylan’s liver numbers back on track and this was a good sign. Riding on this type of roller coaster and trying to keep her liver function nice and smooth is often a difficult balance. These medications are not without side effects, and sometimes there is a tradeoff. In this case the medications compromise Dylan’s ability to eat, causing a very strong metallic taste in her mouth. Nothing tastes right, or good, yet it’s essential for Dylan to keep her calorie intake up. So more complicating and frustrating challenges.

One of Dylan’s gastroenterologists formulated an idea for what may be causing some of her nutrition issues. Dylan retained less than a third of her stomach after the surgery, so the size alone makes nutrition difficult. In addition, the control Dylan’s body has for keeping food in her stomach for predigestion is sorta broken. This often means two things: Dylan doesn’t get to access the nutrition from adequate digestion as food passes into her system, and food can pass way too quickly (going both directions). This had been a hypothesis for some time now, but the scan results helped confirm this.

So the treatment is more or less to completely relearn how to eat, both in terms of how you intake food, the type of food, and the time that you take to eat. What may look like a small portion to most of us is something that the doctors want Dylan to take an excessively long time to chew and swallow with very very small bites. Imagine that your hunger and taste sensations are already compromised from multiple factors, and then you get to throw this on top of everything else. It is a struggle, to say the least.

Dylan has been able to avoid getting a feeding tube, which is primarily a testament to this young woman’s resolve to try and push through, as well as the constant work of Sarah and Leslie. I don’t know how to express the level of care and dedication they are giving our patient right now. It can and must be so difficult during these times when it feels like you have to balance the impossibility of loving someone and trying to help them get what they need while wanting to rescue them away from everything that is causing them pain and anguish. I honestly can’t comprehend what this must mean on a daily basis.

Last Sunday Dylan was discharged from the hospital as her liver numbers had come back down into a good range. During the past week there have been a few positive moments and a little sunshine, but each day I’m pretty sure the level of strain, exhaustion, and continued very small steps forward remain overwhelming. Dylan has appointments about every other day for bloodwork etc, as well as a number of other care issues that I am sure you can imagine are very important.

As an uncle and as a brother, I have to admit that I am having a hard time facing these blog posts when most of what I know is somewhat limited and the news is not necessarily super comforting. Unfortunately, over the past few days Dylan’s liver numbers have started to climb back outside of the range that the doctors would like them to be, so we are all holding our breath about what that will mean. Her body also continues to need more calories than she is able to take in and absorb, and this seems to get harder and harder to accomplish.

We talk and think about our patient every day, as I am sure that many of you do as well. It is good to stay positive, and recognize miracles, but there is also a depth to this reality that complicates the overall perspective. For anyone that has been in similar situations, you can hold gratitude in one hand, and sadness in the other. While each of these disparate feelings are tools with which you get through life, it doesn’t mean that the path is easy. I say this from a place myself of safety and health, but I feel deeply for my family as they wake up each day to face new struggles, new setbacks, and continue to strive forward. I would like to take a moment to recognize the love and support of my parents, Ken and Eileen, for their continued care of their granddaughter. The overwhelming support they have provided for housing in Palo Alto so that Dylan can be close to her care providers and have a home away from home is incredible. And I can not thank all of you enough for your continued support of Dylan on her journey, as without this I don’t know where we would be. We are all so very grateful. Please take the time today to find your loved ones, reach out to them, and show them how much you care about them. There is just nothing more important than that. ❤️

Please consider donating to the Children’s Organ Transplant Association in Dylan’s name. 100% of each contribution to COTA for Dylan is available for her lifetime of transplant-related expenses.