Today, Colin had surgery to install the life port. The surgery was uneventful and he returned to his room with IV access in his chest. Unlike an IV, which can be used for blood draws for only a short period, the port allows for easy blood draws. Even before chemo, this will be helpful for making him more comfortable under treatment.
The head wrapping did not survive the surgery as well as he did. Already a bit tatty, it became stained with betadyne and is fairly unsightly. We are awaiting rewrapping, which will also hopefully reduce the risk of snags. As it stands, the gauze has large holes that can catch in an IV.
While Colin remains strong and robust, it seems that he seems struck by melancholy. We realize that he is still recovering from the neurosurgery and thus perhaps less expressive than we are accustomed to, but his confinement and physical discomfort are taking their toll on him. This will all likely improve when his wounds heal and he is in less pain. We also anticipate that he will be much happier when he is less tethered to IVs and the drain from his head.
The doctors are hoping to eliminate the 3% saline drip that he has been receiving to increase his salt levels. We are talking about increasing his dietary salt intake to facilitate the reduction of this particular therapy. The jury is still out on the disposition of the shunt.
As we look at another neurosurgery, we wonder whether it is possible/preferable to have Colin heal at home more fully. For one thing, it is difficult to get proper rest in the hospital environment. While we understand the medical necessity at the moment, we also believe that it can be draining. The timing of subsequent surgery is not set in stone, and we need to discuss the best options and what is ultimately in Colin’s best interests.
Everyone seems to believe that his physical condition and outlook matter for the success of treatment. Therefore, it is best to support that completely. Rushing from one procedure to another may not provide the optimal outcome. The first surgery was necessary because of urgent concerns with intracranial pressure, but now we can take more time to consider his holistic treatment.
Selfishly, it would be nice to have the whole family at home. Even if Colin is not fully himself, it would be great to have a return to normalcy, if only for a brief moment.
In the meantime, we appreciate everybody’s support, including the messages, gifts and visits. Colin received a very important visitor today, Miss Millie (Mimi) from school. Dad reports that this was the happiest Colin has been since surgery. He enjoyed listening to Mimi read a book and play with him — experiences that have become a normal part of his life.
Especially if Colin is transferred to the third floor, which is a friendlier environment, and continues to receive support and feels better, he may do quite well in the hospital. The ICU is very clinical and he is unable to move around enough to even look out the window. Generally speaking, Colin has proven to be quite adaptable, and children quite often are.
Every day, we face new decisions and considerations. It feels like different factors rise up in importance and challenge what we had assumed the day before. First and foremost is the wellbeing of our family, but it is not always clear what that means and how it will manifest itself. Thank you all again for your support and caring. It means so much to know that we are not alone — those of you who have chosen to track our family’s journey are the wind against our backs and the constant reminder that Colin is a vibrant individual, not a statistic.