One year ago today, I sat in the waiting room at Mt. Sinai waiting to hear the news as two of my boys underwent surgery that would hopefully change our lives. And it definitely has. It hasn't been the smoothest year, with Philip still having many hospital stays, but his new liver is doing its job and that is a truly amazing thing. I remember a post I made about old worries and new worries, and Now my new worries have found a comfortable spot in my mind like they were never new to begin with.
Philip has been able to do so many wonderful things this year that I'm not sure would have been possible if he was still waiting for a transplant. He plays baseball, goes to school, and even went on vacation to Disney World to celebrate his transplant anniversary. He is so full of life, love and personality!
We had planned to celebrate the day by having some family over and ordering some pizza(Philips favorite) and having some cake. But instead, we celebrated right where we started exactly one year ago today, Mt. Sinai Hospital.
Philip started getting a fever Sunday night, so I called the on call and we decided to let him wait it out overnight and just come in to clinic in the morning as we already had an appointment for Philip one year check up. He still had a fever Monday so he got Tylenol and we headed to clinic. I should have known how the day would turn out because as I headed out that morning, a cardinal flew past my car. I've seen them a couple of times before when Philip has ended up in the hospital later that day.
Dr. Chu had muffins waiting for Philip because she remembered that's what he wanted to eat the night before surgery and she ran to Dunkin donuts to get them for him that night. At clinic he did not have fever so we did blood work and were able to head home to just wait it out. Later that day I got a call that his white blood cell count was again low so if he presented with fever again to call and see what they wanted to do. And he did, so I called, and they wanted him to be seen at the ER. We decided to go straight to Mt. Sinai this time. It is les stressful because his whole team is here and there is no middleman and waiting for people to be contacted. His white blood cell increased while here the second day but then tanked once again. He continues to get fevers that are hard to break. And now has diarreah again. So since the white blood cell count is low, they want to be extra careful because of the fevers. His blood cultures for bacteria so far have been negative which is good so they think it is some kind of virus but so far all testing is coming back negative. His hematologist came by and They gave him a shot of the neupogen to hopefully kick start his white blood cells again. He also is complaining of back pain which no one seems to know the source of. And now a subtle rash has started. Infectious disease team has stepped in as well to see what they can come up with as to why he's having these fevers. So we just sit and wait til it passes hopefully soon.
Since our plans had to change today, we celebrated the day with some balloons, little gifts and Philip's team stopped by the hospital today and even a couple from Dans team to wish us Happy Anniversary. Dr. Chu stopped as well even though she is not on service this week. She bought Philip a little tiger too. I really love his team here.
As I looked out the window of our 5th floor room today, thinking of the past year and taking in the beauty of Central Park, I caught a glimpse of a fluffy white feather floating past our window. A familiar feeling like a warm blanket came over me And I knew in that moment that we are exactly where we need to be at this moment in time and Philip will be just fine.
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