post transplant care

Leaving the hospital with Matilda after 72 days was exciting. But it was also very overwhelming. She was on a ton of medications, needed lots of follow-up with the transplant team, and had a very low white blood cell count (this meant that her immune system was very weak). I can confidently say that I never felt alone. The transplant team was just a phone call away to help me with anything and answer all of my questions. Every child is different, every surgery goes a little differently, but this is what our experience looked like post transplant.

Medications:

When we first left the hospital Matilda was on something like 14 different medications that needed to be given every two hours from 5am until 10pm including an injection twice a day. Some of the medications were immunosuppressive to prevent rejection of the new liver, others (antibiotics, antivirals, and antifungals) were to prevent infections due to her suppressed immune system, others still were blood thinners to prevent clots, and the rest were to manage the side effects the others cause - a long list that could overwhelm even the brightest optimist.

Now, Matilda is on four medications related to her transplant - her immune suppressant, a blood thinner, and a couple side effect managers.

Office Visits:

We stayed in NYC for about a month after leaving the hospital because Matilda had appointments with the transplant team every Monday and Wednesday. And because Matilda was doing so well we were able to go home when she turned 4-months-old. We continued to have labs done to monitor medication levels and liver function once a week and we would make a monthly trip to Syracuse along with a quarterly trip to NYC. Eventually we took away the visits to Syracuse and now only visit NYC for follow-ups (still every three months). Matilda has not experienced any setbacks or complications. Labs are done whenever the team wants to check something - if Matilda has been sick or if any medication doses are altered. This could be once a month or once a week depending on the reason.

Home Care:

Matilda will always be at risk for getting sick. And although getting a cold or the flu will not cause liver failure, they can cause complications which could lead to a hospital stay. So, it is important to keep a clean home, limit exposure to people who might be sick, and wash hands often.

For us, that meant always using hand sanitizer before touching Matilda. We keep multiple containers around the house, in the car, and in my purse at all times. Parker is really good about using it whenever he is asked, including after a sneeze, after touching the floor or shoes, and when entering the house.

We always made sure that Matilda played in a clean space, which was easier before she was mobile. We would keep her on a floor blanket that would be washed every night, along with her toys. If anything left the blanket, we would wash it. It wasn't until last month that we allowed Matilda to roam free (mostly) in our home. We go through lots of clorox wipes, never allow shoes to be worn inside, and keep visitors to a minimum.

Limiting Matilda's exposure to people outside the home was very challenging for us. When Parker was a baby, we spent much of our time outside the home, going shopping, visiting museums, going to the library, and having play dates. It took time to adjust to a new life at home. We have begun to take Matilda out more, but we avoid playing in public places (like the library). When we do take her places, we try to keep her in a clean space - either in our arms or in a sanitized and covered shopping cart.

We adjusted to the point where we could see germs everywhere, and now, with the encouragement of the transplant team, we are trying to back up and adjust in the other direction. Matilda can be exposed. Her immune system is stable at "low-normal". We want to allow her the same opportunities that Parker had. But, we still have healing to do, as parents. It is hard when all we want to do is protect her.

I know this is way longer than a normal post, and it does not even cover everything in regard to post transplant care. So, if you do have further questions about what we experienced, please feel free to email me and I will gladly share.