Thank you all for your thoughts and prayers this week while we were away!
Matthew did great down in Boston - he was such a champ. He was such a good sport all day Wednesday while we went through all his pre-appointments, even when we had to do blood draw. Due to anesthesia, Matthew needed to be fasting prior to his cath on Thursday. We had a 10am arrival time for the procedure, which meant keeping a hungry toddler happy for a few hours in the morning. When we arrived at the hospital, we kept getting pushed later in the day, so he ended up going from 6pm Tuesday night until 3:10pm Wednesday without any food (when they finally took him in). By the time he was waking up from the cath (around 7:30pm Thursday) he was so hungry. He downed four popsicles in an hour! Throughout it all, however, it was such an amazing reminder of the perfect disposition Matthew has been blessed with for the challenges he will face in life.
Speaking of the procedure, we were pretty discouraged Thursday night because the cath doctor was not able to fix the issue in his left pulmonary artery for a number of reasons. His goal was to place a stent, but due to the fact that Matthew is a toddler and everything is packed tight in a toddlers chest, they did not have the space to place it. Every time they did the test with a balloon it collapsed Matthew's airway, which runs just behind his left pulmonary artery. It felt like we had put our poor dude through a few very hard days for nothing.
His cardiologist came by Friday morning and was much more encouraging about the cath than the doctor we had spoken to the night of the procedure. Dr. Brown (Matthew's cardiologist in Boston, who we cannot say enough good things about) said that the data they gathered about Matthew during the catheritization will be important for his care going forward, and that we don’t have to feel like it was a wasted procedure. He isn’t concerned about Matthews safety in the short term, and is hopeful that we can try an intervention again in a few years when Matthew has grown and hopefully the structures have a little more space in his chest. Best news of all is that all of the pressure in his Fontan pathway (new connection from his previous surgery) are low (which is good). The pressures in his heart are low, the squeeze of his heart is strong and the valve they worked on in surgery #2 is doing well.
Dr. Brown feels Matthew is in a good place, and we don’t need to be worried about him every minute of the day - we will know if something is wrong and his body needs assistance. We will keep up with regular cardiologist visits and pray for his body to grow and develop in the right way for the next catheterization.
The long term prayer request would be that his Left Pulmonary Artery will not narrow further, but grow to its proper size so that his left lung will get sufficient blood flow from the liver. There are issues that can arise long term if the lung does not receive adequate blood flow from the liver. Also we are praying that his airway to the left lung will strengthen (this runs right behind the left pulmonary artery and was one of the reasons they couldn’t fix the LPA) as he grows so that it doesn’t present issues down the road. At some point we will add a pulmonary doctor to Matthew's team to examine his airway and see if any intervention is necessary. Dr. Brown's hope is that as he grows, it will strengthen on its own.
A short term prayer request is that his cath site will heal quickly and not cause him too much discomfort. Also that he will not have any clotting - it’s a low risk but comes with the scary potential for a stroke. We’ve been doing our best to slow him down at home so that he can have time to heal, but he is a wild animal (which we’re thankful for) and does not want to rest!
Lastly, Ellie had a great time with Amanda's parents. They played many fun things, went to Story Time at the library together, and we came home to a cleaner house than what we left. We are very blessed by wonderful friends and family who support us through all of these challenging times. Thank you to each of you who prayed, reached out or sent us love this week!