July has been a fun and busy month for Judah! Spending his time at daycare with his friends, playing at home and going to the library and playgrounds with us, his first spray park experience, and just this last week a pretty major airway scope with his ENT surgeon, and his first Cleveland Russian party and overnight stay in a hotel with mommy and daddy!
This July has brought a lot of hot days to Pittsburgh, but that hasn’t stopped us from getting out of the house to the parks and playgrounds, because that is what Summer is all about! Judah loves running around at every playground he sees, but wasn’t sure what to make of his first spray park. Hopefully we can get him back to more soon! We also had our very first family night out together where we weren’t sleeping at home or in the hospital! Just this last weekend all three of us made a trip to Cleveland Ohio for Judah’s great grandmother’s 90th birthday! Judah had a lot of fun seeing some of his great big family and everyone was just amazed by him, especially his curls. Judah partied for a bit at his first Russian restaurant experience, and although he wasn’t ready for all the cheering and applause, he definitely enjoyed the trip and all of the entertainment and family. It was also a chance for mommy and daddy to spend an overnight outside of the house without nurses to help. Judah slept wonderfully and we all had a great time!
When Judah was just under 2 months old, he had a cardiac catheterization to balloon open his artery, after which he suffered a reperfusion injury resulting in a cardiac arrest. After spending 5 days on a heart and lung bypass machine (ECMO) and resting for a few more after, the doctors thought Judah was ready to have the breathing tube removed. It didn’t go so well and they had to re-intubate him. They tried unsuccessfully again a few days later. The scarring and swelling was so severe, the only way Judah would be able to breath was with a surgery called a tracheostomy where a trach tube was to be placed. Judah has breathed with this tube ever since. Back in May of 2014 Judah had an LTR surgery to attempt to reconstruct his trachea. While this surgery was a success in opening up a part of his airway, we were told to give him some time and let him grow and continue working on breathing and vocalizing.
Just over a week ago Judah had a scope in the operating room with his new ear, nose, and throat (ENT) surgeon so she could get a clear look inside of his airway and see how he has been growing. While the location of the previous reconstruction looks good, she has noticed that a different area is basically collapsed shut, and while we could continue to wait and see if he grows enough for it to open, it’s possible this will never happen. Our best option for moving forward is to attempt another tracheal reconstruction surgery to open this airway up. Judah’s surgeon is a bit more confident after seeing how his last LTR healed up, and this time wants to try a single-stage LTR, which will be a similar surgery as before – removing some cartilage from the rib area to form a graft that will be placed in the trachea to provide shape – only this time they will remove the trach tube and intubate with a breathing tube, stenting open his airway as he heals. Once he has had a few days to heal, they will attempt to remove the breathing tube and see how he does on his own. If he can not tolerate breathing completely on his own still, the trach tube will be placed back in.
Our surgeon has told us that airway reconstruction can be successful, but many kids do require several surgeries due to the nature of the area being operated on. While we hate to put Judah through another surgery, his options really are to either have the surgery now, or wait a few years and potentially have the surgery then. This is his best opportunity for removal of the trach, or at least to move forward faster right now. Our surgeon moves quickly too, and Judah has been given a surgery date of August 14th, less than 3 weeks away. Earlier this year we given the great news that Judah would not need an immediate heart surgery, but a major airway surgery found its way in instead.
For the next few weeks we will let Judah play and have fun and relax, in preparation for this major procedure. We of course appreciate all of your thoughts, prayers, support, and kind words.