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Keeping Up with Mister Matthew

Our family's journey with Matthew Christopher.

Latest journal entry

Posted 2019-10-08T18:23:17Z

Update on Home Life!

We have been home for a little over a month as a family! The first few weeks were full of appointments with different doctors to make sure Matthew was recovering well and that the pleural effusion did not return - slowly the number of appointments is returning to normal! Needing to head to the Emergency Department in August because of complications definitely made coming home this second time more stressful. We are obviously thrilled to be home, but we must fight anxiety if anything seems off about Matthew and do our best to prevent our minds from going to worst case scenario. Thankfully, his recovery has been going well and he hasn't given us too many scares.

Matthew only has three more weeks on coumadin (they keep HLHS patients on this for 3 months post-Fontan surgery) and they have finally figured out a coumadin dose to regulate his levels (this means he is up to getting his blood tested every 2 weeks, versus multiple times a week like it was for a period of time)! There were a couple of days where his levels were too high and they basically told us to put him in front of the TV so he couldn't fall and hurt himself (which is easier said than done with Matthew)! We are continuing to work him off of his low-fat diet (remember, he was limited to 10g of fat per day for a while). There is no exact science on how to reintroduce more fat, so Amanda has been amazing with keeping track of numbers and making sure he doesn't get too much too soon.

This past weekend we traveled down to Carver, Massachusetts to visit Edaville Amusement Park. If you know anything about this park, you know it has Thomas Land (all about Thomas the Tank Engine). Matthew LOVES Thomas. We found out about this place a few weeks before surgery and many times in the hospital, told Matthew (and ourselves), that we will get through this and when he is doing better we will get to go there. Our family had been looking forward to this trip and, once we got clearance from his cardiologist, it did not disappoint. There were moments where we both got a little emotional at seeing just how happy both of the kids were - it was a great reminder of God's goodness throughout this season. After everything that's happened the past couple of months it was even better than we could have hoped for - except for when we ran Matthew over with the stroller...thankfully he survived :)

Matthew has his next cardiologist appoint on September, 22nd. This is a very important appointment because they will be doing another echo-cardiogram to check on the function of his heart and the new pathway post-surgery. His cardiologist is a little concerned over the size of his left pulmonary artery - she believes it is a little more narrow than before surgery. It could just be a case of bad imaging, but regardless she is very interested in how it looks with this echo. If it looks narrowed again on this echo then she will be referring us back to Boston for another cardiac catheritization. This would require general anesthesia and an overnight stay. If they need to go this route, they can get more accurate data on whether or not it is narrowed and then attempt interventions to fix it, if necessary. Our prayers are that the echo on the 22nd won't show any issues and we can continue to get back to normal life. This is nothing to be concerned about in the short-term, but long-term (since half of his blood flow is now passive and has no pump) he needs everything to be wide open.

We will update soon after we hear! Thanks for reading!

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