Our sweet Brody was born on January 12 of this year. He is now 7 months old and is just the sweetest little boy. Unfortunately we have spent the last 5+ months in the cardiovascular ICU with him, and we aren’t sure when we will be able to return home. We found out about Brody’s VSD (a large hole in his heart) when he was only one week old. This can lead to having issues with eating, so he got a G tube at one month old, and is strictly fed through that tube in his belly. When he was almost two months old, he got rhinovirus (the common cold) and that started this hospital stay. He had to be intubated once we got to Levines. This started the biggest nightmare of our lives. Over the course of the following months, he failed extubation four times. Ultimately, he was not able to breathe on his own. This led to our decision to move forward with Brody getting his trach. We were so hopeful that this would get him home! While we are so thankful that he has an airway, Brody has continued to have severe respiratory failure. Even after having his heart repaired & that going so well, it still didn’t help his airway failure. He has been off and on sedation and a paralytic for the past couple months. Our team has done absolutely everything that they can, here at Levines, but they have run out of things they can do. We knew that Brody’s quality of life would be very limited if we continued to stay and not explore other options. We proceeded with an airway surgery in Boston that is only done in a few hospitals in the country. He has such severe tracheomalacia, that there is no trach that would give him a stable airway without surgical intervention. We arrived in Boston a few days before Brody’s surgery so that they could run some tests and see his airway for themselves. They got a game-plan for surgery & he went in on a Tuesday morning (august 1st). That surgery was 12 hours long. Brody was stable the whole time and is such a little fighter! They went in through his posterior chest, and wanted to avoid going in through his neck because he will likely have another surgery there when it comes time to take out his trach for good (not anytime soon). When they went in, they realized how his airway and esophagus were anatomically placed and had to proceed with the surgery a little differently than planned. And because they went in through the chest, they could only see up to a certain spot on his airway. While the surgery did significantly improve his airway collapse, from what we could see, we still had to see how he recovered. Day 2 post op, the nurse felt something in his airway when they were suctioning him through his trach. We did a bedside scope and saw something at the bottom of his trach. We weren’t sure if it was swelling or more malacia, but we knew that something was off. They did a repeat CT scan, and all of the surgeons in the country that perform this airway surgery looked over his case and came up with the best plan for Brody. We spoke with one of his surgeons for an hour discussing what they found and what they were going to do moving forwarding. Ultimately, we all felt it was best for Brody to go back into surgery, and this time, they would go through his neck as well. On Monday morning (august 7th) Brody went back in for another 12 hour surgery. Three of the surgeons were in there the whole time, making all the best decisions for him. Because they could now see higher up into his airway, through his neck, they realized that there was even more severe damage done to the back of his trachea. It had adhered itself to the tissue on his spine, so when they went to take it off his spine, he had a hole in his airway. This could have been detrimental if we had not gone back in and gotten this fixed. They were also able to put his esophagus in a better position to where hopefully he won’t have issues with eating one day. Because of the severity of damage on his trachea, they wanted the best possible recovery for Brody. They felt it was best to keep him intubated from his mouth & not put the trach back in for one week, along with being sedated and paralyzed. That way his airway can heal without movement or the trach hitting his airway in any way. While Brody was resting and healing, angelo and I decided to fly home for a few days to reset and see the girls that we missed so so much. Monday (august 14th) Brody will go back to the OR to get his airway evaluated. They want to make sure that the tissue is healing the way that it should be. They will also have multiple trach sizes that they are going to attempt to put in again. We are praying that his airway is healing so well, and that the trach fits perfectly in his airway, without causing any damage. Over the last 5 months, I (Jessica) have been at the hospital with Brody. We never expected any of this to last this long. Angelo has only been able to work at about 40% capacity since he is also having to take care of the girls more than he ever has. Over the last 2 weeks, angelo and I have both been in Boston to be with Brody and to make all of these big decisions together. We’ve been so incredibly blessed to be helped by family, financially, during this time. And often by friends as well. This whole year has gone differently than we could have ever imagined. We have had so many unforeseen expenses & we know there will be more to come. We have had so many people ask how they can help us, and it’s often hard to think of anything. This is the most humbling thing that we have ever done. We are incredibly thankful for each and every one of you. Even if you aren’t able to give, prayers mean the world to us. We know the Lord is going to bring us through this. He has sustained us this far & we know He will never leave us. Thank you from the bottom of our hearts for continuing to pray for Brody, our strong strong boy! ❤️ #Brodystrong
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