I can't believe it has been a MONTH since I last posted on here. I was doing good updating weekly for a while. Sorry for the lack of posts. The boys are both doing great. Jacob is walking EVERYWHERE.
We have been preparing for our next journey to Philadelphia. We are leaving tomorrow morning and will be in Philadelphia through Monday. My mom, Aidan, Jacob and myself are driving there and Andy's step mom (MiMi) will be flying there to meet us.
Here is the plan for the next few days:
Driving to Philly and "Trying" to relax with the boysTHURSDAY
8:20am: Meeting with ENTFRIDAY
9:45am: Meeting with Cardiac Anesthesia
12:45pm: Meeting with GI
2:00pm: Jake will be getting a heart echo to check his function. Jake will most likely be fed up by this point so pray they can get a good picture of his heart. It will be a non-sedated echo.
Sometime during the day I am dropping off 12 Sisters by Heart packages to CHOP's Center for Fetal diagnosis and Treatment to be given out to new families about to have a child with HLHS.
Jake will go under cardiac anesthesia and have scopes by ENT and GI. They will give us the time on Thursday evening. GI may leave a probe in that will stay in overnight. If they leave it in then he will be spending the night at CHOP in the cardiac unit.SATURDAY
Hopefully if all goes well then Jake will be discharged Saturday morning. If he is back to himself then I will bring him back to the hotel where my mom and Mimi will watch the boys. I will then go back to CHOP to attend the Cardiac Seminar they are having. The seminar is from 8am to 5pm and will discuss their Single Ventricle Survivorship Program. I won't be able to attend the whole conference but I would love to at least get the information. I am really interested in enrolling Jake in the survivorship program when he gets older. I also look forward to hearing what advancements have been made and seeing some friends I have met along this journey.SUNDAY
If Jake is back to his old self and we feel comfortable doing so then we hope to take the boys to the beach for the day for some relaxation. We will of course have to play it by ear and also see what the weather is like as well.MONDAY
Planning this trip has been very emotional for me. I know Jake will do great with the scopes, I am just nervous about what happens next. After the scopes I will discuss surgery with his doctors. I don't know if they will want to do his surgery right away, in a few months, next year. I know we will be in the best possible place for Jacob and I feel better knowing his cardiac team is there. I am just so nervous about this surgery. Jake is a fighter, he is the strongest boy I know. As his mother I just want to protect him and make the best choices that I can make for him.
I know that his breathing is not normal. Now that he is walking (Which he is doing everywhere now!) his breathing is very labored and I do worry about what it will do to his heart. I would love to see him walk across the room without needing to stop to breathe. I know he NEEDS this surgery, still it never gets easier handing him over. So many "What ifs" go through my mind. I hope to be able to ease some of these fears after talking to the specialists. Anyone that knows me also knows that the more I know the better I feel. There is so much about this surgery that I don't know. I know that they need to shave a part of his rib to use as a graft... I don't know how they need to get the shaving. I know that his voice will be affected... I don't know how much. I know that he will need to be on the ventilator for a week while he recovers... I don't know how he will tolerate that. I know that if they don't get enough of his vocal cord removed this time then he will need to have the surgery again... and possibly again.
I am nervous. But I have faith and most of all HOPE. I have seen Jacob come back from so much worse. He is my warrior and I will be by his side. I KNOW if anyone can beat this next hurdle in our journey it is him.
I will update when I can. I am not sure if I will be able to update Thursday after I speak to the doctors, it will be a LONG day. I will update Friday when we get Jacob settled and let everyone know how he did and what the doctors think. Please pray for Jacob. The last time he had these scopes he screamed and thrashed for 2 hours straight and there was no GI probe that time. Also, Please pray the doctors can make the right choices for our beautiful boy. And if you could, pray for strength for our entire family.
Thank you so much for all of the prayers and support.
The Baker Family