Hello everyone! First, our apologies for not posting sooner with the good news that we are back home! We came home Wednesday evening, and have had a very busy few days getting settled back in.
While we are home, Matthew still has a lot of recovery and challenges ahead. The team at Children’s got him to a stable enough place so that we can manage his care with our cardiologist here in Manchester, but his body still has a lot of healing to do. He is still receiving a heavy duty diuretic twice a day to keep the fluid from re-accumulating around his lungs, as his body is still adjusting to the new pressures and bloodflow after surgery. (If we stopped, the fluid would come back and begin to reduce his lung function again – which is what sent us back to the hospital with low oxygen saturations and difficulty breathing last time.) Because the medication is so strong, we also have to give extra supplements to make sure we don’t deplete his body of good things while we pull so much fluid off.
We saw his cardiologist on Friday for a chest x-ray, and we relieved to see that no fluid has re-accumulated. This is a good sign that we have him on the right dose of diuretic for now. We also had to do bloodwork, which showed that his electrolytes are in the right range and his kidneys continue to tolerate the medication. All good news!
We will keep everything as is until we see her again on Wednesday and repeat all of the tests…at which time she will decide if his body is ready to begin weaning back or if it needs more time to heal. Unfortunately, there’s no real way to know this until we pull back on medication and see if the fluid re-accumulates – which is scary for us as parents. Please join us in praying for wisdom – that she will be able to interpret test results, assess his condition, and make safe decisions with a supernatural wisdom. And please pray that Matthew will continue to tolerate these medications well.
Another medical challenge since coming home has been managing his Coumadin levels. Children’s puts all Fontan kids with a fenestration (extra pop-off hole to manage pressure) on Coumadin for 3 months as a way to reduce the risk of clotting. The goal is to keep the fenestration open as his body adjusts to new pressures, but that requires blood thinner. Matthew is followed by their special Coumadin team, who sets a “therapeutic” goal for him and adjusts his doses to keep him in this range.
When we came home the first time, Matthew had just reached therapeutic – which meant he only needed to have his levels tested once a week. But after being on a different diet (more on that in a minute) and being on so many diuretics during his second hospital stay, his levels have been all over the place. He was low when admitted, so they upped his dose…but since we have gotten home his levels have been too high. Low levels mean he is at an increased risk for clotting, but high levels mean his is at an increased risk for bleeding.
When tested on Friday, his levels were very high (5.5 for any of you pharmacists or nurses who I know read the blog) – and we had to go on high alert to keep him from any bumps or cuts. It was very scary, and we drove the poor dude crazy with only quiet play, extra tv and us carrying him around all the time. Yesterday the nurse came back out for another finger prick, and thankfully his levels dropped enough that he isn’t in as much danger of bleeding. Still too high – so we will have to test again on Monday and work with the team to keep adjusting his dose until we get it within range. Please join us in praying that we will get his levels regulated quickly so that he is safe and doesn’t have to be pricked every couple of days. The poor guy gets so upset, and has been pricked so many times lately.
Our other challenge right now is the low-fat diet Matthew has been prescribed. Some of the team at Children’s think that his fluid accumulation may be chylous – which is an inability for his body to safely process fat, a result of damage to his lymphatic system during surgery. Chylous was a big problem after his first surgery as a new born, and was one of our worries going into this surgery. He didn’t present any chylous when recovering, so we thought we had dodged the bullet…but some of his team thinks that may be what’s going on now. As a precaution, they have put him on a low fat diet – so that if this may be the issue, we allow his lymphatic system time to heal.
When I saw low fat, I mean LOW fat. He is only allowed 10g of fat per day, which is challenge for a kid who lives on cheese and red meat. We are scrambling to find ways to keep some sense of normalcy, but do our best to adhere to such a restrictive diet. While overwhelming (since pretty much everything in my pantry is off-limits), we are finding things that he will eat. Please pray for me to have creativity in his snacks and meals to keep us on track for the month that we have to do this. And for him to continue to be a (mostly) good sport and eat what I put in front of him!
It has been an emotionally hard few days, juggling so many tests and appointments…while watching Matthew closely to make sure that his breathing / color / saturations are good – or that he doesn’t fall and get hurt. (And oh yeah, we have another kid who is tired of all this chaos and unrest.) We have been feeling very tired under the weight of being charge of someone so fragile. It’s a gift to be home in our own house, but stressful to feel like Matthew’s safety rests on our attentiveness.
We have been trying to remember that ultimately God is in control of Matthew’s safety, but it’s scary stuff to grapple with every day. We welcome your prayers for rest and peace and joy – that we will be able to celebrate the victories as they come, and not be consumed with fear. Today was a good day, with time in the garden as a family and a break from medical appointments. I think it was helpful for all of us, and gives us hope of more normal days to come.
Thanks, as always, for your prayers and encouragement. We are grateful for each of you who lift up Matthew and our family. xo