Back to school

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.

Home at last

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.

Released

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.

Cath Complete

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.

Update

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)

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. 

 

Surgery Completed

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.

Surgery in progress

 

James surgery has just started. 

They think it will take around 6 hours.

If they have to make adjustments on his 

tricuspid valve (which has a small leak) 

it will take an additional hour or so. 

Fontan Surgery

Well... James did not have his Fontan Operation yet, but we have it scheduled.

 
After Wednesdays visit to Texas Children’s Hospital in Houston we got it finalized that James (now 7 years old) will have the Fontan Operation at Texas Children’s Hospital. We had a consultation with the surgeon Dr. Heinle to explain the whole procedure and the scheduling team to get everything planned out.

We are going down to Houston in the end of the month and will meet with the team on August 1st for pre op.  After his surgery he will be recovering in ICU for 24-48 hours. He will have drainage tubes from the heart making sure no fluid build up. He will remain at the Hospital for 7-10 days (until drainage tubes can be removed) and we will stay down in Houston for another week or so after being released.  When James comes home he will have to stay home from school and away from physical activities for about 6 weeks (making sure his breast bone heals up).

The reason James did not have the surgery yet is because he had a few more complications at birth and has had high pressures in his heart, which could make this surgery very high risk and could cause other issues after the surgery.  With help from our local cardiologist (Dr. Lemler) new medicines, and James himself, things have changed. Last heart catheterization he did in the middle of March this year, they saw his numbers (pressure) had gone down and the team at Texas Children’s Hospital finally said he would be ready for the surgery. He is still a high risk patient, but they all agree it is the next step for him. The goal of the third surgery (Fontan) is to disconnect his Inferior Vena Cava from his heart (No more oxygen poor blood) and connect it directly to the Pumonary Artery. After the Glenn operation, the oxygen poor and oxygen rich blood was mixing in the heart preventing oxygen levels to get as high. When the blood comes back from the lungs it will be oxygen rich and the right side will then pump it out to the body. In James case the surgeon will leave a fenstration, which means, a small hole from the Inferior Vena Cava will be left open to the heart, allowing a small amount of blood to come back to the heart if the pressure gets too high. This can close on its own if blood just passes by, or made bigger if needed. After this procedure his oxygen levels will be higher and his energy will increase.