Tuesday, May 22, 2012
My heart has been full of so much emotion over the past week. All of my emotions came to a head last night and I think I may have had my first mini breakdown here in the hospital. First of all, yesterday marked our five weeks since admission anniversary. I can't believe I've been here for that long! It's not fun being here--at all! I miss Josh and Luke. I miss Matt. I miss Tball games. Soccer games. Being present for the end of the school year events at the kids school. I miss my shower. My bed. My kitchen and cooking. My functionality at home. Etc. Etc. Some days are long. I feel like I am running out of creativity. Matthew is used to all of my tricks and we've been as creative and playful as one can be confined to a small hospital room. Sometimes I get discouraged and then I try to think of each day here as a gift. I know there will come a day when I would give anything to have one of these with Matthew here at the hospital back. Being with Matthew is the silver lining in all of this. Who gets to play with their child all day, every day? I do. When I get discouraged, I try to remember this and savor each and every moment. Secondly, Matthew's angel heart anniversary and two year transplant anniversary was Saturday, May 19th. I think a lot about the little donor whose parents selflessly gave Matthew the gift of life two years ago. Without them, so many memories and experiences would never have been known. I continue to be overwhelmed with gratitude for them. Even though we never had the chance to meet our donor family, I feel connected to them. Which makes being on the transplant list again hard for me. I love this little heart in Matthew's chest that beats so valiantly. I have listened to it almost every day for 2 years. Never has a mother been so grateful for the sound of a beating heart than I have been each time I hear it's beat. There are still a lot of feelings of guilt associated with being the mother of an organ recipient for me. I try to realize I was not the cause of any tragedy and that hopefully the family felt some comfort in knowing that their child has lived on in Matthew. The thought of going through all of these emotions again with residual emotions from the previous donor about kills me. I continue to pray, not for a heart, but that if a parent is placed in a situation where they could be potential donors that their hearts will be softened and they will say yes. Lastly, and the "straw that broke the camels back" Matthew has not been doing great. It started with severe arm and hand pain in his PICC line arm. They did an xray and things looked great. They contributed this pain to his peripheral neuropathy and increased his dose of Neurontin. Three days later he spiked a fever (Sunday night). Immediately they thought PICC infection. They started Vancomycin and Rosefin Sunday night. They drew blood 6 times!!! Checking for all kinds of things Sunday and Monday. His hemotocrit is low again. They pulled his PICC line which meant his Milrinone is running in his peripheral IV which is not as effective as a deep or central line. They did an ultrasound of his arm and found three clots associated to his PICC. All things considered transplant felt we were safer moving downstairs to the CICU where Matthew could be more closely monitored. Receiving this information was a complete bombshell and took me by surprise. Hence, the mini breakdown. As I was packing up all of our belongings from the room we've pathetically and accidentally called home a few times, I about lost it. At this point, I don't know a lot. Matthew received a blood transfusion last night. He seemed to be doing better by the time we were transferred to CICU. I think we caught the infection early and we are on top of it. He is still on the transplant list. We will deal with a new access and treating the blood clots today. They wanted to rule out a GI bleed which could explain a low RBC before they give him Heparin or Lovenox- which completely makes sense. Anyway, my mandatory hour of leaving the ICU between 7-8 is up and I'm dying to get back to my guy. Keep praying for him. Please!! I love this little guy so much. I just want whats best for him and sometimes I'm not sure what that is anymore. Still, I have not given up hope and I will continue to fight for him with all my might. Thanks for all of your love and support!