Our Urologist here at home recommended that we decide where we will have Lochlan's bladder and urethra testing and procedures done. We headed to Boston for two days to see lots of doctors, and check out the neighborhood to get a feel for a log-term stay. I thought that it would be a very tough decision, but it became clear by the end of our stay.
We were able to stay very close to the hospital this time in the Longwood neighborhood. We were pleasantly surprised that it felt family-friendly and not like a major big city. Before our appointments, I took Lochlan for a long walk and felt safe surrounded by people walking to work and children walking to school. The close proximity to Trader Joe's and Whole Foods is a bonus. The hardest part about the whole trip was being away from Declan. He was well-cared for by his grandparents, but the Woodard clan is not complete without Declan.
Our first appointment was with the Urologist. The bad news is that he is concerned that Lochlan's bladder may not be neurologically intact. Because he has a congenital spine deformity and an imperforate anus, it is common that the bladder does not function the way that it should. They would like to do some urodynamic testing with a neurologist before proceeding to surgery on the urethra. The good news is that Boston has the experience and foresight to solve this problem before Lochlan has a kidney transplant. He explained to us that we do not need to proceed urgently, but the surgical procedures should be completed before he is able to control his bladder. We really like the Urologist, and we feel strongly that Lochlan's best shot at having urinary continence someday depends on going to Boston.
It will be a financial risk for us because our insurance will not cover travel expenses, and I will need to miss lots of work to travel with Lochlan. It also may mean that I will need to travel alone while Adam stays behind to work and to care for Declan. I am saddened that we may not be able to all stay together for frequent trips, and I will feel guilty for not spending time with Declan. However, I just know that if Lochlan's outcome was poor at Albany Med, I would never forgive myself. If things didn't work out in Albany, we would find ourselves in Boston anyhow.
The rest of our appointments went really well. All of the doctors could not believe how healthy he looks and gushed that he was such a good baby for all of the exams. The transplant team said that unfortunately, Lochlan's trouble eating and inability to hold large feeds is common amongst children with renal disease. We will continue to work on the feeding, but I'm not going to obsess over it anymore because in time, he will eat. The GI doctor was very kind and knowledgeable as well. We are going to start Lochlan on a supplement that should help. Otherwise, they agreed that Lochlan is getting great care from us and his doctors at home.
I like Boston Children's because they always make us feel like we can expect Lochlan to have a long full life. It is so uplifting for me to imagine a life for Lochlan that does not include feeding tubes or devices. Little by little I have allowed myself to have these thoughts because it helps me make important decisions that will affect Lochlan for the rest of his life.
