I am so sorry that it has been so long since I have updated everyone on Jacob. The boys have been keeping me on my toes!
To say Jake is mobile is an understatement. This kid is EVERYWHERE. Jacob is either crawling at warp speed down the hallway or walking along the furniture.
Unfortunately, the moment I have been trying to avoid like the plague as creeped its way into our home. Jake has his first cold. Aidan has been congested for a few weeks. It gets worse when he is outside so I was not sure if it was a cold or allergies. I am thinking its a bit of both. I guess I should be grateful that we were able to avoid it for a whole year, through 2 open heart surgeries! Still, for Jacob colds are extra scary because of his tiny airway.
So far its just a cough. His breathing sounds a little "Junky" so I think he is a bit congested in his chest but he is handling it well. I have been checking his oxygen saturation periodically and he is always around 85 which is great for Jake. I called his pediatrician to let her know and she agrees that there is no need to bring him in unless he has a fever, decreased appetite or low saturation. Even though he is acting normal part of me is still nervous every time I hear him coughing.
Despite the cold Jake has not slowed down a bit. I swear I look away for a second and the kid is down the hall in my room with the vacuum, lol. Jake LOVES the vacuum cleaner. Aidan used to at that age as well. I pulled out Aidan's old toy vacuum thinking it may distract him but he is no dummy. He wants the real thing. He loves to chase it around the room as I am vacuuming. He gets this big old grin on his face, super cute.
I think one of the main reasons I have not written a post in awhile is that I have been having a hard time with the new diagnosis of Jake's vocal cords. It's hard for me to sit down and think about or write about the fact that he is going to have more surgery this year. I know he has been through much worse and I know he is a fighter, but he is also doing so well and I don't want him to have to fight through even more.
I have always said that I won't live Jake's life fearing his death. This is true, but there are times where you can't help but be afraid. Right now is one of those times. My mind is so full of "What-ifs". I am having a harder time with this surgery than his last open heart surgery. I know that sounds crazy! I think it is because I have always known that he NEEDS the 3 open heart surgeries in order to survive. I don't know that he NEEDS this airway reconstruction surgery. Jake has always proven to beat the odds and fight things that most can't. 95% of kids with his airway need a tracheotomy immediately. Jake has half of a heart and a tiny airway yet he continues to do amazingly well. His heart function is great right now.
The fear is that Jake is working so hard to breathe it may eventually wear on his heart. We need to protect his heart at all costs. We do not want him to end up needing a heart transplant because he wore it out with his breathing. As Jake gets older and more active he will be needing to push more air through his airway which means it will also become increasingly more difficult for him to breathe. So even though Jake is doing well now it is a risk to let it go on like it is.
THE PLAN
We will be heading to Philadelphia in August. On August 11th we will meet with the ENT and GI teams at CHOP, we will also be meeting with cardiac anesthesia. We will hang out in Philly for a week and then his scopes will be on the 18th. It is very hard to get all of the different departments coordinated on the same day so that was the closest they could schedule our two appointments.
On the 18th, Jake will once again be put under cardiac anesthesia and ENT and GI will each perform a scope. The reason GI is involved is they need to make sure Jake is not aspirating. If he is then it could cause severe issues after they open up his vocal cords. Once they are done we will discuss surgery. I plan on making sure they feel this is 100% necessary. I am also going to talk with his cardiac team while there about the risks. I want to make sure everyone agrees that this is the right choice for Jacob.
If everyone agrees then they will schedule his surgery. It will most likely be a month or two later depending on how urgent they feel it is.
THE SURGERY
I don't have all of the details right now and I am trying not to let myself Google. From what I do know they will have to shave a part of Jake's rib off and use that to make a graft which will be placed in his vocal cords. They will be removing part of the vocal cord which is irreversable. They can only take a small amount because opening them up will effect his voice and eating. They want to take the least amount while also allowing a good amount of airflow. Jake will then be on the ventilater for a week and sedated. This is the part I fear the most. I have not seen Jake on the Vent since the first few weeks of his life. It was the hardest thing I have ever had to go through. I know it will be 5x harder now since I have had him at home and watched him grow and develope. Please pray he does well and has no issues being extubated.
They will do a scope a month later and see how he is doing. If he still has issues then we will have to repeat the process. They want to do a scope every few months. I am hoping we can go to Cincinnati for the follow up scopes because I can't drive him to Philly every month and flying would be way to expensive.
So that is the plan. Please keep Jacob in your prayers as he begins this next part of his journey. I will make the best choice I can based on what his doctors think and what Jacob needs. The rest is not in my hands. I just have to keep the faith and pray that it will be ok. A few more prayers would be appreciated!
Heart Hugs,
The Baker Family
Jacob and Daddy
