Cath canceled

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.

Heart Catheterization

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. 

Two Weeks Since Surgery

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.

    

One tube left

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. 

Visit from brothers

           

Up and Walking

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.

Recovery

 

James is awake and is sitting up. They want him to sit up so his fluids will drain through the tubes. He has three drainage tubes and one be will hopefully be removed today. He just needs to be up and walk around a little, but that will be later today. Everything looks good and he is doing as expected.