Status Updates‎ > ‎

June 12

posted Jun 12, 2010, 3:28 PM by Sean Molby

So much has happened this past week. Tristan is still doing good, gaining weight everyday. He is up to 8 pounds 8 ounces! He is smiling and laughing now when he sees me and we even got some good pictures of it but Sean has not had the chance to update the photos lately.

 

As I mentioned in the last post Sean and I had discussed not going through with the G-tube surgery for feeding, however the doctors had different ideas. We were expected to get to go home last Wednesday with no surgery but then a new complication arose….statistics! We spent most of last week arguing and debating over what is the next best step for Tristan. The doctors are worried because apparently statistics show there is a high mortality rate (risk of dying) for a heart baby, especially one that has had the hybrid like Tristan has, if an NG feeding tube is left in after surgery. They don’t know why but the risk of (basically sudden) death is 20%. That is about the same risk as his 1st heart surgery. I can not begin to explain how scary that is.

 

The problem is another surgery even as basic as G-tube could be dangerous for Tristan as well, but no one knows “for sure” the best solution for him. The doctors want the surgery because it is an easy fix. We and most the nursing staff are not sure how Tristan will do. His “statistics” show a hard time of recovering from very simple procedures but he is stronger now and doing much better than he has in a long time. It is too early to do another swallow study because of the risk of excessive radiation. Personally I had a horrible feeling about the GI surgery until Sean and I decided to not go through with it.

 

Ultimately the decision was taken out of everyone’s hands as the surgical team made the decision early this morning and refused to do any surgery on Tristan, that wasn’t life or death, this close after recovering from the NEC. They did not consider the GI surgery a necessity and said if the doctors still wanted it in 6-8 weeks they would re-evaluate him then.

 Soooooo, we are not back to square one. No surgery, the NG feeding tube stays and Tristan is to be discharged to come home for his very first time in a couple of days. We have to wait for some home health care equipment to be ordered and delivered before he can come home.

 

I am not going to lie; I am scared to death for my baby boy. What if I am wrong, what if the surgery would have been better. I don’t know what I am going to do if anything happens to him. All I have left is to ask all of you out there to please pray for Tristan and our family as we bring him home. Please pray that he has no complications and that he keeps growing and looking healthy. Pray and please ask that he be allowed to stay here with us to live the life he has tried so hard to fight for. Just please pray!  ~Christy

Comments