Wednesday, April 25, 2012

All cried out

What a long day! I figured I'd finish it off with updating my blog since so many of you are anticipating the outcome of our meetings today. Matt was post call today and didn't get much sleep last night. Call really means "30 hour inpatient shift". These are long days for Matt. Matt was a good sport to agree to come to the hospital and participate in such deep and emotional conversations when he was going into them feeling worn down. Our meetings started at 2:30 with the palliative care team here at Primary Children's hospital. The last hour of our meeting the transplant team joined us. We talked to everybody for 2 1/2 hours. Transplant told us that after a long review of the literature, the CV surgeon and the rest of the team felt that Matthew would not be a candidate for either the LVAD or ECMO as a bridge to transplant. The risks far outweigh the benefits and they feel like the outcome would not end well for Matthew based on past literature (which is limited anyway because there aren't too many children needing LVAD or ECMO when they are less then two years out from transplant needing another heart). Furthermore, transplant told us that we've reached the end of the line in terms of treatment options available to Matthew. We could consider increasing Matthew's dose of Milrinone one last time in the future, but the team felt like the effects of the drug should be seen by now. Increasing Matthew's dose would also require a full time CICU stay. Furthermore, Matthew is too sick to come home. This may change in the future, but we are not anticipating his congestive heart failure getting better rather it will continue to get worse with time. We will most likely be inpatient until transplant. For now, Matt and I have decided to stay the course hoping and praying that, if it's the Lord's will, a heart will come for Matthew. He is happy and playful for the most part. You certainly would never guess that he was in end stage heart failure. If we start seeing other systems begin to fail, we want to take him home on hospice. There have been evidences of some organ damage as a result of his heart failure with his bowel and his gallbladder. So far his liver and kidneys (failure of these organs would require Matthew to be taken off the list) are doing okay. I am nervous because his kidneys are working extra hard as we are giving Matthew 3 dieretics 5 times a day to help remove the extra fluid his heart cannot get rid of on it's own. Matthew has lost over two pounds of fluid since we were admitted 10 days ago. I just wonder how much more his poor kidneys can handle. Transplant admitted that finding a good match for Matthew will be difficult because of his antibodies and his O blood type- he has to take an O heart. Matthew was listed as a status 2 on January 31st and then bumped up to a status 1A on March 15th. Transplant has only had a few offers which ended up not working out because of additional antibodies not listed in the system. This is discouraging! The rest of the conversations were based on Matthew's death. What we wanted, different scenarios of his death, what treatments we could withdraw from and when, DNR at home or at the hospital. On and on and on..... I literally think my tear ducts dried out from the tears I shed in that room! Sorry to be Debbie Downer, but that is the reality of our day. I really appreciate the love, support, and prayers from so many of you that have literally carried us through this day. Thank you!

12 comments:

  1. Chrissy please know how much your family is Loved, and being prayed for at this time. Let us sustain you. I pray specifically for your strength, to accept the Lords will, and that sweet Matthew can continue with his spirits high.All our love to you!

    ReplyDelete
  2. My heart is breaking for you. Prayers coming as they always are. Sending love and tear filled hugs as well.

    ReplyDelete
  3. I am so sorry Chrissy. Words can't even describe. But the last thing you are is a Debbie Downer... I know things must be harder even than you're letting on. Please know that you are loved and being thought of and prayed for continually. And that we're praying for little Matthew as well. Wish there was more that we could do. Please let us know if there is!

    ReplyDelete
  4. Chrissy - you do have a bridge to Matthew's transplant. No, it's not LVAD or ECMO, but it's the prayers of hundreds of people who know you and love you...and who don't know you, but still love you. Have faith in that bridge. It guides you to enduring loyalty and eternal love. Let those prayers settle in your heart and in your mind, and let them lead you to transplant.

    Work on Matthew's memory book. Describe these days as they are - the bad and the good. Maybe even record conversations with him and get him on video. These things can serve two purposes - 1) later on, when he has his new heart and is doing well, you can show him what he's been through and how he's survived, and/or 2) it will be a great testimony to you that you did absolutely everything - possible and impossible - that you could have done to give him the best life. We all wish for quantity of years, but the best gift is quality of years. Matthew has gone first class for four years, thanx to his devoted family, the best medical care available, the love and prayers of hundreds, and his own indomitable spirit.

    We pray for so much more, but are grateful for what we have today. Matthew is a happy, gracious, lovely, and loved little man. May peace be his, whether he's four or eighty four.

    love,

    Mary

    ReplyDelete
  5. With tears in my eyes and a heavy heart please know that we love you. You are amazing and your faith and perseverance are such examples to us.
    Love,
    Lisa

    ReplyDelete
  6. I cannot even begin to imagine how it felt to be in that room with the treatment team discussing sweet Matthew's future. My heart aches for you. We are praying for his heart to come. Thank you for your incredible faith. Thank you again! Lots of Love, Teresa

    ReplyDelete
  7. So sorry for this news. I have been close to your situation and am available to talk or visit anytime. Hang in there. I know that is lame advice, because what else are you going to do...but Matthew knows you love him. We will pray for you all.

    ReplyDelete
  8. Chrissy:

    My heart has been so heavy for your family ever since I read this post. I remember so clearly the day we sat in that same room and discussed Annie's options and future. Discussions that no parent shoule ever have to have. My only advice would be to not lose hope...to live without it is unbearable. Miracles happen every day! I'm praying that Matthew gets his soon.

    ReplyDelete
  9. You don't know me, I married Mark Sperry's son- Brett. Mark and Barbara have told my about Matthew and kept me up to date over the past few years. I just wanted to say that your family will be in my prayers!

    ReplyDelete
  10. Hi Chrissy,

    I am Matt's cousin, Jeanne. Thanks for sharing this update. I have heard updates through my parents about little Matthew off and on. We will continue to pray for him and your family.

    ReplyDelete
  11. We'll continue to pray for you guys. Sending all good thoughts & love your way. Love you!

    ReplyDelete
  12. We continue to pray for Matthew to receive a heart, and for you and your lovely family to have strength and peace during this time in your lives. I cannot begin to imagine the ups and downs you all have been through, but please know that you are so so loved, and Matthew is in good hands, here and from above. xoxoxo always, Betsye

    ReplyDelete