James was released from the hospital Friday afternoon. He is still in Houston with mommy. They will go to a follow up appointment on Monday to do a echocardiogram, EKG, and meet with the cardiologist to make sure everything still looks good. Hopefully they can come home after the follow up appointment.
James heart catheterization is complete. They ended up opening up the fenestration (the path from the Fontan tube to his right ventricle). His lung pressure was pretty high and they said opening it would be the best solution. His lung pressure was 18, but ideal would be in the low teens. The opening they made during his surgery was 3 millimeters, but had closed a little and was down to 2 millimeters. The cath doctor placed a stent in the opening, it is now 5 millimeters wide.
The surgery team also came in and removed his chest tube. Hope it will be a quick recover from here.
James heart catheterization is scheduled for 8:30 am tomorrow. Sounds like the surgeon will remove the last chest tube while he is under anasthesia. Finally we are moving forward.
Cardiac Catheterization (click on link to learn more)
The heart cath has been postponed. A machine they use broke so we were not able to get in today. We have not been scheduled for another appointment yet, but we are hoping for tomorrow or Wednesday. I will update when we know.
Well… James is having a heart catheterization tomorrow morning. The reason is because his last chest tube keeps draining fluid.
The heart cath doctor will go in with cameras to measure his pressures and look at his heart function to see what is causing the drainage.
The cardiologists and surgeon believe the pressure might be high in the pulmonary arteries (PA), which would cause the fluids to keep draining. During the cath they will initially measure the PA pressure and see if everything else looks good from the surgery (which is a good thing to make sure of). The cath doctor will examine if the pressure can be controlled through medicine and then they will coil off some collateral veins his heart has developed. He had several collateral veins developed in the past to relieve PA pressure and were coiled during previous heart caths in Dallas.
The next step will be to open up the fenesration (the hole from his Fontan tube to his heart) to make it bigger and allow some more deoxygenated blood escape to the heart, which will relieve the pulmonary arterial pressure. Subsequently this will lower his blood oxygen level since part of the deoxygenated blood comes in to the heart and then pumped out to his body.
All these steps might not happen tomorrow, but were all discussed as options to stop the drainage.
If his PA pressure gets lower over time, the blood might bypass the fenestration and it could close by itself. The fenestration can also be closed during another heart cath later down the road which will bring his blood oxygen levels back up. Right now his oxygen levels are ranging from low to mid 90s’.
This is not what we were hoping for, but seems to be the best for James right now.
Wish him good luck tomorrow morning.
It’s been two weeks since the surgery and we are still here at Texas Children’s Hospital. The recovery is taking a little longer than expected. The last tube has been draining alot of fluids, but has slowed down in the last three days. If the drainage keeps slowing down in the next few days the tube can hopefully be removed by the end of the week. If it doesn’t slow down the doctors have to figure out why it is still draining so much and another heart catheterization will be done. We really hope to avoid this. James is feeling good and his pain has subsided. He is up and moving around several times a day. Yesterday he made slime with the Child Life Specialist and had a really good time.
James just removed a second tube from his chest and we are waiting for the drainage to slow down in the right tube so it can be removed. Unfortunately this tube started draining more then twice as much in the last few days as it did in the beginning so it looks like it will take a little longer before we can leave the hospital. The tubes are causing him some discomfort, so we are working on managing the pain and trying to control all his fluids. Besides that, James is doing great, he is eating, walking around, and playing lots of x-box and Nintendo Switch.
James got out of bed today and started walking. Everything is moving along and he should be moving out if ICU tomorrow. One chest tube was removed today and hopefully a second tomorrow. Two IV’s were also removed. He is looking alot better already.
We just spoke to Dr. Heinle and he said the operation went well. Dr. Heinle said the transfer from the heart lung machine went smooth and the breathing tube is removed. He said James Fontan pressure looks good and his oxygen levels are in the 90s’. James is in the ICU and getting situated, can’t wait to go see him. He has done so great! So proud of our little man.
