On Hold and Update

Gracie is still on the ventilator and pretty sedated most of the time. Not much has changed since the last update. On the last culture from her vent tubing, there was no sign of infection so that is a plus! On a daily basis they are continuing to get chest x-rays, labs, and blood gases throughout the day.

Last week, the doctors decided to hold off on surgery for Gracie. They will repeat another echo on Monday and then decide what the best plan of care will be for her. The surgeon said that right now Gracie's valve measures a 14 or 15mm and the smallest valve they have is 16mm, so we are hoping that Gracie has grown enough to stretch that valve out a little for an easier fit. The other option is to treat her with medication and wait a couple of months for the surgery. We are leaving the decision up to her doctors because they have seen this and know what will be the best choice for Gracie and her little body.

Another surgery

I talked to the nurse a little while ago and she said that Gracie is scheduled to have mitral valve replacement surgery on Monday. I don't know a whole lot of details but will try and catch the doctors tomorrow. I will keep you updated when I know more.

12 days out from surgery

Okay, so surgery went pretty well but we have had some ups and downs since then. Gracie is still on the ventilator. Last Saturday, they tried to take her off and she just was not ready and one of her lungs collapsed so back on she went. They have kept her pretty sedated and sleepy most of the time. She also developed an infection in her lungs called Pseudomonas so they have her on three or four antibiotics

I talked to the cardiologist on Friday and he was not very hopeful that the repair was going to work with Gracie because of the leakage and fluid that was still on her lungs. He said that he thinks that there was going to be a chance greater than 90% that she will have to have a valve replacement very soon.

Last night right before bed, I called to check on Gracie and the nurse said that she was having some breathing difficulties. Being overly protective, I went up there and you could definitely tell she was struggling at each and every breath. They upped the sedation medicine hoping to calm her down, but this morning ended up changing out the ventilator, tubing, and whole thing. Gracie was doing much better today and was resting peacefully. They sent out another culture to see if the infection is still there and we hopefully will know results by Tuesday, but if all goes as planned (I don't know what that is) then Gracie will probably have her mitral valve replace within the next couple of weeks. Please keep praying that she is gaining strength each and every day and that the doctors and nurses that take care of Gracie do whatever is the best thing for her. I told one of the nurses yesterday that I guess we would just have to have her 1st birthday party in the ICU!! It is a very difficult time for all of us and right now the waiting game is just making sure we have patience!

Surgery is over!

The doctor came out a little while ago and said that he was pleased with the surgery. He said that he was able to cut out some muscle and extra tissue in the heart. He said that he also cut some slits in the valve to let the blood flow through more. Dr. Harrell said that the pressures in the heart and the gradient are much better now than they were before surgery.

The recovery is going to be difficult as well, but at least the initial surgery is over, but Gracie is still in critical condition. Keep praying and I will be updating her condition as we know more!!

2nd surgery update

I just talked to the nurse about 10 minutes ago and she said she thought that Dr. Harrell was able to repair the valve. She also said that she was still on the bypass machine and didn't know how much longer it would be. but that she would call after Gracie gets off the bypass machine. She said so far, Gracie is doing great and will let us know.

Update and Pictures

The nurse just called and said that they just now made the incision. She said they had trouble getting the central line in and that she was not even on bypass yet, but literally just made the incision. I will keep you updated.

Surgery day!

About 45 minutes ago, they took Gracie into surgery. They are expecting it to take about 5 hours or so, which is a lot less than we expected so we will just have to wait and see. The nurse said that she would try to call and give us updates every hour or so on what is going on and how Gracie is doing. Keep praying and I'll update a little bit more when I know more.