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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

Post op recovery…

It has been a long day…Matthew has proved that the only thing predictable about him is that he continues to be un-predictable and defies most “norms”

As of 10:30 pm he is resting comfortably (at least as much as possible). He continues to hold on to his squeaky toy dog and will not let go. They removed the ventilator tube about 7:30 after having turned it off an hour before. We are thrilled as they thought the “norm” would be to keep it in all night.

He is breathing quite well and his lungs are keeping clear. It will be a long night as the plan is that I will stay with him all night and Theresa will relieve me in the morning. We cannot Thank Aly for the miles she put on walking Sarah Anne this afternoon while Theresa and I were with Matthew when he woke up. We look forward to having Meggan (not our Megan) come and do the same tomorrow. Both of these gals were care-givers for Matthew over the years while they attended Grand Valley State University. Aly is now a nurse at U of M and Meggan will be graduating from U of M dental school in a few weeks. We are thankful for the friendships we have made and continue with them.

Speaking of friendships, we met an amazing family, of all places in a waiting room yesterday as we had pre-op appointments. The friendship has grown as they are on a similar path as ours as we have shared and prayed for each other as our paths have crossed over the past few days. Even thought it shouldn’t, I am amazed how God puts the right people in the right room at the right time to give strength and encouragement. To top it all…He even arranged that Matthew and Paislyn beds were right next to each other in the ICU. Please lift up Paislyn, also known as “Little Miss Miracle” as she recovers from this, her second heart surgery in her short life. I am looking and praying over Matthew and Paislyn as I type this.

We are not completely out of the woods yet, but are very encouraged so far. The exact words from the surgeon, and echoed by his cardiologist were “things went better than expected and hoped it would”. The repair was consice and the echo post-op showed just a small leak. Now we pray for no fevers, no infection and managed pain.

We are very thankful for the “sharing” of the blog that all of you have done…We are most assured that the good news we report is the direct result of your partnership…please take a moment to share with those you have already shared the result of thier faithfulness to pray.

God is good all the time, all the time God is good.