Monday, May 24, 2010

It is Monday morning and another week is ahead of us. It has been raining all night and this morning we woke up to snow! It is may 24th for crying out loud. All of our beautiful petunias are going to be dead! (Isn't it weird to think about the things we worry and think about?)

Matthew is about the same today. The lights are on but it doesn't seem like anyone is home. He is actually a little bit better. He is moving more and when they pulled his one remaining mediastinal tube out he actually flinched and tried to cry. Can you imagine what it must be like to be in enough pain to cry but not be able to? There were tears in his eyes. His epicardial pacemaker leads were also removed as was his arterial line. The only lines remaining are his Foley (if he could pee on his own that would come out too), a PICC (peripherally inserted central line), a small peripheral IV, and his NG tube. It is so nice to be able to pick him up and hold him. He is in Chrissy's arms as we speak and has fallen asleep again.

Our working diagnosis for the mental status change at this point is medications. For those of you in the medical field it is like his speech is locked in but everything else is okay. He got his last dose of thymocyte yesterday . . . it is a drug isolated from rabbits and as far as I am concerned reminds me of the Wii game my son Joshua plays: Rabid Rabbits. I hope that it is as simple as a medication that just needs to wear off. What a terrible thing to have a new heart but no brain. I just want him to be better.

We also heard some more good news this morning regarding the trailer spot that we are in. Originally they said that we could only have it for 3 nights. Amazingly and miraculously Bishop Flannery met someone as they were pulling out who said that they were leaving about two weeks early. Our first text message this morning was from the Bishop and we now have a place to stay until the 31rst. Thank you Bishop. You have gone above and beyond and another tender mercy has been provided.

The whole experience has been an amazing sequence of miracles and blessings intermixed with challenges and stress. My prayer today is to hear Matthew call out for Deedaa one more time. Only time will tell. We love and appreciate all of you. Thanks for your support.

9 comments:

  1. Thanks for all the updates! It definitely seems like a roller coaster. Matthew and you guys are in our prayers and thoughts constantly -- Chad and Jill

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  2. wow. It's 90 degrees in Chicago...for what it's worth, I've been talking to my sister, Gina, the PICU RN. I shared what I understood about Matthew's mental status. She said one of three (probably all) things are in play 1) he's OD'd, 2) his body is reacting to terrible trauma/shock, 3) he's very angry about it all. In her 20+ years of doing this, she hasn't seen a child stay in this state of mind. Sight unseen, of course, she thinks this will probably be temporary. We're all praying for this to be the case. Let Josh & Luke see him as often as possible. She says she has seen miracles when siblings come into the room. I'm praying, praying, and praying. My brain is numb. But you're thinking about petunias while i'm thinking about popsicles.

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  3. You are constantly in our thoughts and prayers and are confident that Sweet Matthew will continue to improve. Thanks for the blog and keeping us posted!

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  4. I'm so glad you are able to hold him again. That must be wonderful, considering everything. And that is awesome about the camper... Sounds like you have a great Bishop and a Heavenly Father that loves you very much. Good luck with the rest of the day!

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  5. Glad to hear some progress. Also, way to go Bishop!! SO happy to hear that he was able to get that to work out for you guys :)

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  6. Oh, wow. I just got caught up on all that has happened. You and little Matthew are in our prayers. I wish we were closer to help your sweet family out. Love,
    The Dowdle's

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  7. Let me know what I can do to help, if the kids need a break, food, or just a visit. Our prayers are with you everyday. Rachel and family

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  8. I was just alerted to all that your sweet family is going through. All the knowledge and expertise you have must feel like such a blessing and a curse. We pray that Matthew heals as quickly as possible. What a blessing to know your Heavenly Fahter and to have the Priesthood in your lives. We hope that you can feel the prayers of all those who care for you. Good luck.
    The Yamamotos

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  9. Matt and Chrissy, sweet little Matthew is in our prayers-- as are you and Josh and Luke. We love you.

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