Still Not Easy

Exactly one month ago, I hit the "publish" button to tell you all the news that Mom got her new liver. But let me be clear: Times are still very hard.

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I have informed everybody that progress will be slow (Although her appearance has improved so much since the surgery). Mom has been in a nursing home in Westport for several weeks now; We've joked about how this is her longest stay out of the hospital. My visits have not typically coincided with her therapies, but several times I have witnessed her walking both short and long (All things considered) distances. We are thrilled with the progress she is making, as well as at her determination.

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On Saturday, though, Mom was once again transported to Yale New Haven Hospital. We were warned that short-term hospitalization is possible post-transplant if her team feels that she needs closer monitoring or that her levels may be off. Although Mom's doctors feel she is healing well, she felt as though something was wrong and tests agreed. For several days her belly had been swollen as it was before the surgery--something very uncomfortable for her. It has caused her extra pain.

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Given this information, her doctors at the nursing home first ordered an X-Ray. The X-ray appeared to show a bowel obstruction. Mom's doctors at Yale later determined that this was not the case. Mom spent 7 hours in the Yale emergency room while they ran tests and leaned toward infection as a possible explanation--A suspition again deemed untrue. Now, when Mom is taken to Yale we are accustomed to it being a "simple" immediate admittance to their liver and transplant floor. The emergency room is an *almost* unfamiliar situation these days. Now that she has been there two days, the doctors feel they know what has caused this. It appears that the donor liver may have been strained, and the body and liver are trying to play catch-up, causing this swelling and discomfort. THIS DOES NOT MEAN OR OTHERWISE INDICATE THAT MOM'S BODY IS REJECTING THE LIVER.

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If I may, I would like to speak more about how things are still not easy for my family--Not just for my Mom. The big picture tells us that Mom will heal, even if it takes awhile. But still, it is so hard even to be on my family's end of this. It is hard walking into Mom's room and watching her cry because of how much pain she is in. It is hard having no choice but to push her to eat, drink, and move no matter how unappealing or exhausting it is for her. It is hard having to wear a paper gown and gloves while visiting, knowing that at any moment we could still bring in germs that would make her and her suppressed immune system very very sick. It is hard trying to tell her a two-minute story and having her drift off to sleep for lack of energy. It is hard knowing that she has no voice and no independence, and questioning if the staff is actually taking care of her once we leave for the day (Understaffing is a serious problem, and while we are visiting it is very apparent that they are so often unable to take appropriate care of her). It is hard having to drive an hour or close to an hour for a visit every single day. It is hard, now that Mom is back at Yale, knowing that the city of New Haven charges a mint for parking simply to visit a sick loved one (When Mom was in Yale long-term before the transplant, the city's parking cost about $400/driver/month for the amount of time we spent visiting Mom. Absolutely absurd). It is hard for us now because it was hard before. It is like so much has changed and still nothing has changed. We just need to rest on the faith that it will.

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There is one more thing I feel the need to discuss: The wonderful donor who saved my Mom's life. A couple of weeks ago I was blessed to attend Mom's donor's memorial service with my family. We did not know this young woman personally, but our families knew each other. It was so hard being there, and such a privilege as well. We are sitting here watching my Mom struggle in her recovery, but at the same time we are truly grieving for the loss of this amazing young woman who saved my Mom and so many others with her gift. We are grappling with the gravity of the situation from our end and her family's--The gift and the cost. We will repeat it a million times over: We are so grateful for this family and the decision they made to help us in the midst of unspeakable grief.

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Thank you all for walking with us through this time. This may not be the last hospitalization as Mom heals (In fact, it very likely will not be), but your prayers, happy thoughts, and support have carried s through so much. We will continue to keep you posted on her road to recovery.