My Little Star

I can't believe it's almost June! Where did February, March, April and May go? I feel like Bill Murray in the movie "Groundhog's Day". Each day is the exactly the same with a few differences. Today Matthew and I decided to mix things up a bit. Matthew stood on the base of his IV pole while I pushed him around the hospital halls. The cleaning guy just cleaned the floors so the orange cones were still up. These cones quickly became our targets. Matthew pretended the cones were zombie hats (if you have the app plants vs. zombies you know exactly what I'm talking about) We had a great time crashing into cones for quite some time. I love hearing Matthew giggle out loud!! It's one of my favorite sounds. Matthew is out of CICU and back to his happy little self. We've had a few "issues" this past week but I feel like we are in a better place. Matthew is taking Lovenox shots twice a day to treat his blood clots. His poor little legs are black and blue- poor sweet baby!! He started getting anxious every time the nurse came into the room. We made a sign for the nurses to hold up when it's shot time so he knows when to expect it so he doesn't worry about it all day. I'd like to say it's getting easier but it's not! His cries still break my heart with each and every shot. They tell me he'll need these shots for the next three months. Thank heavens I don't have to administer them myself while he is inpatient here! Another "issue" is that Matthew is neutropenic. His ANC was 400! The medical team is not sure why his white count is so low but decided to start Neupogen shots to help release the immature WBC from his bone marrow to increase neutrophils. So far it is working. The transplant team said that if Neupogen doesn't work we will have to consult with Hematology. I don't like the sound of that so I'm praying really hard that the shots work. Our latest problem is that Matthew's new PICC line which was placed 6- I repeat- 6 days ago is not working properly!! One of the lumen's is not flushing or drawing back. We will come up with a plan for that tomorrow. We can't leave a one sided clotted PICC in Matthew because of the risk for infection. They may try to rewire this PICC or in rounds today the idea of a broviac was casually mentioned. A broviac placement would require surgery to place it. We'll see where tomorrow leads us. On a lighter and funnier note, Matthew made it on the front page of Monday's Deseret Newspaper. Deseret News came by the hospital to interview Matthew and I last week. I think we had way too much fun! Here's the link to the article: http://www.deseretnews.com/article/765579078/Personal-investments-from-Primary-hospital-workers-help-families-cope.html This week is Primary Children's telethon- their biggest fundraiser of the year. They have been prefilming content for their aired telethon for over a month now. Because we have been in the hospital for the entire month and we signed the consent a long time ago, the foundation has been hitting us up for all kinds of pictures and stuff. Apparently Matthew and I are in a commercial which is currently airing and Matthew helped to make a music video. The telethon will be aired on June 2nd. So, please watch to tell me if they included any embarassing shots like me and Matthew running over the cleaning man's cones with Matthew's IV pole and please donate to this fantastic hospital who's physicians and staff have prolonged Matthew's precious life on many occasions. Our gratitude to the physicians and nurses who have spent countless hours caring for Matthew can never be expressed in words.

Moving Down

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!