Guilt, Fevers and a New Year

As the new year begins I can't help but reflect on 2016. It was a scary, exciting, frustrating and fun year. I watched as Philip and Dan get wheeled into a surgery that was sure to be life changing. What we feared for a couple of years was actually unfolding right in front of us. We could move on and Philip could live a more normal, comfortable life. And it has been all of that for him but at the same time, he's had more hospital visits in 2016 than the year leading up to transplant. The itching has been  long gone and I can barely remember waking every hour at night to comfort him. But in its place, immuno suppression has shown us that life after transplant is still challenging but just in different ways. He's been struggling with low neutrophil numbers which make it hard for him to fight infection and keeps him from attending school.  It makes living a normal life a little harder. I am nervous about bringing him anywhere or who he comes in contact with. I thought hospital stays would lessen but most recently found us in the hospital for two consecutive stay with only a week or so break in between. We prayed so hard for Philip to be home for Christmas and were blessed that he was able to be there.
One issue I personally struggle with is a situation that came up this past week. A good friend was getting married in Florida and I was asked to be a part of the wedding. There was no question that I wanted to be there for her so I planned my trip several months ago. As it got closer we prayed Philip would be ok for me to go and luckily he came out of the hospital the week before and he seemed to be doing well. In the back of my mind though I was worried something would happen while I was gone. I had overwhelming guilt for wanting to go away and be with my friends to help celebrate but at the same time felt bad that I was leaving my family in a precarious situation.  Dan and I talked about it at length and decided we too had to live our lives. We can't sit and wait for things to possibly happen and potentially miss other important events in our lives. So I headed to Florida On Wednesday to start  a week of celebrating my friends nuptials. Dan had to work Thursday so the kids would stay at my parents house for the night.  I was having so much fun hanging out with some of my favorite people and then Thursday night right after I went to sleep, I got a call from Dan around 12:45am. I knew immediately what the call would be. Philip had a fever. Well, I've never felt guilt so bad in my life. How could I have agreed to go away and have fun when my poor baby is sick and on his way to the hospital. Guilty for putting my parents in that situation and for Dan being all alone at the hospital. Dan had to leave work and meet my parents at the ER. I must be a terrible mother for doing this. How selfish of me. I immediately started looking for flights back but Dan said to wait a little bit and see what some blood work said. Again all signs pointed to a virus. The wedding was Friday So we decided that I could wait it out and go to the wedding. If I went home I would just be sitting there doing the same thing Dan was. I would be flying home Saturday anyway.  There wasn't much time to make a decision as I was up til 3am waiting to hear some info and we had to start getting ready at 8am for the wedding which I think helped make it a little easier to say ok I'll stay. And it was an amazing day. I was so happy to be there for my friend and to help her celebrate and I will never regret that. I face timed the boys in between and was able to relax and have a great time. Looking back now that I'm home, I don't think it was selfish. I am allowed to look forward to events and want to spend time with friends I don't get to see often. Philip was in good care, they knew what to do if this happened and it played out exactly as if  I would have been there from the beginning. So I flew home Saturday and came straight to the hospital from the airport. We always joke that a holiday is coming so get ready because Philip will be getting sick any minute and no joke, We spent New Years Eve in the hospital this time. This stay has been very similar to the last weeks stay. Headaches, diarreah, irritability, high blood pressure, high prograf levels, dehydration. He is finally starting to act himself and eat something so hopefully we will be able to go home very soon. It is so frustrating that if he was a normal healthy kid, no big deal, he'll just be sick for a few days but any little bug Philip gets, it hits him hard and we get a hospital stay. It can always be worse though, we've seen families that are still here from last visit.
So here's to a happy and healthy 2017! Can't wait to see what it has in store for us!