Thursday, July 29, 2010

What A Relief!

Jacob went to his pulmonology visit today. I had been dreading this appointment for fear of what they would say. It could not have gone better! His doctor spent an hour and a half with him. She was so amazing. She did not run any tests just listened to his breathing and looked over past x-rays and tests that had been run the last time he was at CHOP.

She told us she has seen many kids with the "Strider" sound that Jacob makes. She said it is commonly seen from intubation and also from reflux. Jacob has both! He was intubated for 2 weeks at birth and 3 other times for other procedures. She also said that the retraction should also go away with time.

They had done a study when we were here before and found that his esophagus was "Floppy". This was aggravated by the vent and the reflux. This floppiness causes the strider sound. It should get better as he gets older however there is a medication called bethanechol which can help tone his esophagus. The fact that when he sleeps he makes no sound also points to it being from this. His esophagus is relaxed while he is sleeping. The pulmonologist also said she recommends we increase his prevacid which I had wanted to do anyway. She increased it to twice a day instead of once. She also recommended atavan, an inhaled steroid.

She wanted me to run all of this by his cardiologist first. Dr. Szwast agreed with upping his prevacid and said that the bethanechol to tone his esophagus was ok. She does not want him on the atavan prior to surgery so we will revisit that later on.

It was so nice to hear from a specialist that she was not worried about his lungs. She said there was still a little fluid there and that should go away as his heart is repaired. We won't fully know if it will resolve on its own until the repair of his heart is complete. The fact that he is gaining weight so well, not sweating when he eats, thriving is all very positive that he will be ok. After his Fontan if he is still having a lot of difficulty they can do a Cat Scan and other tests to see what is going on. She is pretty confident that this is all a fluid issue and from the vent not from lung damage.

They want to do a follow up in 4 months however I explained we were not from the area. I told her we could go to Cincinnati. She said they have the BEST pulmonologists and she highly recommends Cincinnati Children's Hospital. She said to call her when we get set up with them and she will send them all of our information. It was good we went today because if Jake has any problems while recovering from his Glenn she said they have his file and can come right over for a consult.

She thinks Jake is much stronger now and he has proven 4 times that he can handle anesthesia so she thinks that he will be fine for this surgery as well.

We still can't get into the Ronald Mcdonald House but I am calling daily trying to get a room.
I can't tell you how relieved I am that today went so well. Please continue to pray for Jacob, the prayers are working!

Here are some pictures of Jake and I showing our love for Baby Mia Grace Marrone who lost her battle with HLHS on July 25th. Mia was a heart buddy of Jake's and she will always hold a place in our hearts. We wore PINK today to celebrate what would have been her 3 month birthday (Jake has on a pink bracelet to show his support!). We love you Jenni, Ray, Cole, and baby Madden.


  1. I am glad the appointment went well. Sounds like Jacob has some awesome doctors. Sending many prayers that you guys get into the Ronald McDonald house soon.

  2. Becky in Milton said....

    Glad to hear things are going well with all the appointments. Praying the surgery and recovery go well also.