Jacob's Journey

Jacob is such a trooper. He proves to me time and time again how tough he is. He did so well in recovery. He was a bit confused and fussy when he first woke up but it was not more than a few minutes. He slept quite a bit and we were out of there and back at Ronald by 5pm. He has acted completely normal all night. You would never know that he had gone through anything today.

After my last blog entry I spoke with Jacob's cardiologist at CHOP. She gave me more information about the atrial septum.

She said that the tissue in his atrial septum has always been there. Dr. Spray got what he could but that angle can be difficult. She did not seem concerned but said that she would talk to Dr. Spray and see what he wanted to do. She was happy with the heart function and said the pulmonary vasculature was fine.

We spoke to Dr. Spray's PA and she said that Dr. Spray is going to go in there and take the atrial septum out. It is somewhat restricted. This kills me because that was such a major issue when he was born and I thought that it was done reaking havok. So it will be removed again and I am praying it will not become a problem in the future. She said that it is no big deal, he does this during the Glenn in a lot of cases and it should not affect his recovery. It will also only add about 10 or 20 minutes to the whole process.

She explained to us that these babies tend to get a hemi-head after the Glenn. Basically they get swollen from the nipples up and they turn blue at first also. This may last a couple of days or he may have some up until his fontan but it usually goes away. Their blood is re-routed directly to their lungs so the lungs need to adjust to the extra pressure. This is also why they get post Glenn headaches. Generally the kids do really well after the surgery.

Surgery has been post-poned until Thursday now. Dr. Spray had an emergency Heart/Lung Transplant come up so he won't be able to do it tomorrow. I am actually really glad about this because now Jake has a day to rest before going into surgery. So we are back at Ronald and will return on Thursday morning. I should get a time tomorrow night.

Jake has been having some brady episodes tonight where his heartrate drops and occasionally a desat but I am monitoring him and he seems completely fine. He was even smiling tonight.

I will update again all day on Thursday. Thank you for the continued prayers. Please keep them coming as his Glenn will be a little more complicated now. We are glad they did the cath however because now they know to take it out while they already have him opened up instead of it becoming a problem and needing an extra operation.

Heart Hugs.