Tuesday, May 22, 2012

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!

10 comments:

  1. We're praying for your sweet Matthew. Stay strong momma. <3

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  2. We're praying for sweet Matthew & for your family! You are very strong Chrissy.

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  3. Chrissy, I'm sorry this has been so difficult on you and your family and especially little Matthew. Stay strong and if you ever ever need someone to fall a part to, know I'm always available and although I may not be in the room I'd let you vent to me over the phone for as long as you needed to. More than anything I don't want you to join my club so I pray diligently that, that is not what is in store for Matthew. I will keep praying and you keep fighting in time I know things will all be well. I have a plaque that says All Is Well that came from a blessing my dad gave me while Gabie was in the ER. In my blessing heavenly father told me all would be well. Things didn't turn out well like I thought they would but I've hung on to that blessing from that day on and I know all is well, even though I hate it as times. I Love you and I know no matter what all will be well.

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  4. Chrissy, I cannot begin to imagine how hard the last few hours have been for you. Your little hospital room was a home for you, and a place of many precious memories (amongst ones that were difficult). I hope there have been some treatment answers found, and that you can quickly return to a less intensive level of care soon (unless there is a new heart involved :). I am praying for Matthew, you, your family, his medical team,...and that donor families might be inspired.

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  5. Thank you so much for keeping all of us updated. I hope little Matthew is feeling better and I'm sure that you have already come up with new games/creative ways to play throughout the day. :) Keep on keepin' on, Chrissy. You're one strong mama, and keep fighting - we're all fighting with you! Love you all!!

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  6. Chrissy, I am so sorry for all your family is going through. You have been on my mind alot and i feel so blessed to have gotton to spend time with you and matthew the other day. I am praying for the best for your little guy, love you guys!

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  7. Love you! We will always keep your family in our thoughts & prayers. Sending lots of love to you.

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  8. Chrissy, our family continues to pray for and think of you and your sweet boy! I can only imagine the difficulty of all of this! You are such a wonderful example to me, of selfless love and goodness in the face of scary and challenging circumstances, to say the least! Jace will likely be on the receiving end of a heart donation someday and I have so many mixed emotions about it all. Thank you for filling me with courage to do whatever needs doing, for my son!
    Love,
    Ranee Hansen, Jace and our whole family

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  9. I love you Chrissy! We love your family so much, I remember you coming into primary in Chicago 7th to teach the sunbeams. My first sight of you, it wasn't long before i knew of the kindness in you, the love you have for all you come in contact with. I remember sitting outside your house and you telling me you were pregnant and the excitement you felt for getting pregnant so fast. I remember Matthew being born, it's so hard to believe how much time has gone by. You are doing an amazing job, your boys at home are being strengthened by our Father in Heaven. They are seeing a mother's selflessness, a mother who gladly serves her family with all her might. Your a lovely in every way. Second to TJ, you are my hero!

    Ginger

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  10. I second Ginger, You are my hero as well. I remember you holding one of your sons in your lap and rubbing his feet, while you were teaching Relief Society. We all sat close and listened to you talk. I will never forget that day and how beautiful that Relief Society lesson was to me. You are one of the strongest women I know. Heavenly Father sees you and is watching over your Family. Let him hold you up, lean on him as much as you need to. I pray all the time for Matthew and your family. You are always in my thoughts. Love you
    Violet

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