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Keeping Up with Mister Matthew

Our family's journey with Matthew Christopher.

Latest journal entry

Posted 2020-01-25T18:39:16Z

Update in the New Year!

We hope this message finds you well! Since we last posted in October, we have been enjoying our time as a family through the holidays. Each doctors appointment for Matthew has brought good news as he has successfully been weaned from the heavy duty diuretics, off Coumadin, does not require any blood pressure medication and has dropped one of his GI meds! His energy level after this surgery is even higher than before. He has more stamina to almost keep up with his sister (who is now his best friend). Matthew still needs to slow down and take more breaks than most, but we are so grateful with how much he runs around. 

We are heading down to Boston this week for a cardiac catherization for Matthew. There is a part of his left pulmonary artery that looks slightly narrowed on the echo cardiogram. When he had his cath pre-surgery they noted it as something, but the surgeon opted to leave it alone during surgery. It is not something that poses an immediate risk if it is narrowed, but long term we need his arteries as wide open as possible since this part of his circulatory system operates without a pump but by passive flow. There is a slight chance that the echo is not accurately showing what's happening, so the best approach is to have a cath where they can get right to that spot and measure. If it is narrowed they should be able to intervene with a baloon or stent. This is something that his cardiologist believes should be taken care of in this cath and not be a long term concern. 

Although this is "routine" in many ways, we have been struggling to maintain peace as we lead up to it. He will need to be under anethesia for the procedure, which always poses extra risks. Being completely honest, instead of always anticipating good news, we often go into these things expecting bad news which adds to our stress. If you feel led, we would love prayers for a good proecdure with clear answers, this will be able to be moved past and Matthew will be able to continue to thrive and grow. Also, please be thinking of Ellie - she is blessed to be with her grandparents for three nights, but us having left her so much over the past couple years has led to her having a harder time with us leaving.

We appreicate all of you and will update as we go. Thank you! 

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