James had his first day back to school today. He was greeted by his friends, teacher, and principal. All his classmates had made signs for him to welcome him back and a big sign was posted on his locker. James was very excited to be back.
His appointment at Children’s Medical Center last Thursday went well and Dr Lemler said everything looked good. He is still on a lot of medications, but will gradually wean off some of them.
We finally have James home. He had an appointment with the cardiologist, Dr. Samantha Le, at Texas Children’s Hospital Thursday (sept. 1st) and he is looking good. His oxygen level is around 93-94 and the fenestration is working. A small amount of fluid is still in his chest, but should absorb by itself according to the Dr. He was finally ready for the trip home.
After James spending 33 days in Houston, the family is together again. James will stay home from school for another week and then slowly get back in the groove. He has done a lot of blood draws, x-rays and we are so glad he does not have to go through that anymore. He is on several different medications, but they will gradually decrease. He has been woken up at 6am for a hard x-ray board placed under your back in the bed, then awakened again at 7am having someone stick a needle in his arm to draw blood. Taking 10 different medications all through the day and night. It has been a lot for James, but he has been a true warrior throughout all this.
We are meeting with Dr. Matthew Lemler at Dallas Children’s Medical Center next Thursday to update him and get back making our appointments locally. We are all happy to have our James home and getting back to our normal daily life.
Thanks for all the support, gifts, and prayers. We truly appreciate it, it has definitely helped us along the way.
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.
