Texas Children’s Hospital Houston

James is now three and a half years old and is doing great. He is a boy full of energy and definitely keeping up with his big brother. If you didn’t James had a heart defect, you would never be able to tell.



James 3 1/2 years old

On Wednesday May 23rd, 2018 we went to Texas Children’s Hospital in Houston again. Yes, again. We have been preparing for James Fontan surgery and we believed he was going to have it this summer. Dr. Forbess who performed James previous surgeries is not at Dallas Children’s Medical Center anymore, he got a new job in Chicago and left. We really like Dallas Medical Center and we liked Dr. Forbess.


Another option we have considered and our second choice is to have James surgery performed in Houston by Dr. Heinle. That is why we were at Texas Children’s Hospital again. We met with Dr. Heinle (surgeon) and Dr. Moodie (cardiologist), they told us what they believe is best for James at this time. They think it is better we wait a year so James can grow and see if his blood pressure goes down. Since James had quite a high blood pressure in his lungs it created lateral veins in his heart. Dr. Nugent at Dallas Children’s MC was able to fuse some of James veins during the heart cath last year, but he created more this year which Dr. Nugent again could fuse when he had another heart cath this past March. In Dallas they said his blood pressure has gone down and weight is up, but not quite as much as hoped. James also started on a new meditation that will help the blood pressure go down, so they wanted to monitor that for a little longer.


We really liked Dr. Heinle, Dr. Moodie, and the rest of the straff at Texas Children’s Hospital. We made our decision. Now we know when James next surgery will happen. It will be next summer in Houston. 

Home at last

It has been 2 weeks since James had his surgery and he is doing great. We brought him home on monday night just in time to celebrate his big brothers second birthday. Tomorrow James has an appointment to make sure he is doing good after surgery, so we will be going back in to Dallas again. He is happy to be home and he bringing more joy in our home. We have another step out of the way and the future is looking brighter. We are so happy that we decided to have James surgeries at Children's Medical Center. Dr Forbess has done a great job, all the doctors, nurses, therapists, and technicians has been amazing. Thank you all so much.

Moving up

We are now on the 8th floor at Children's Medical Center. James was moved into a new room while recovering from his surgery. He did not need to stay in the cardiac intensive care unit any longer. He is doing really well and we were all surprised when they said we were moving up. His breathing tube was removed last night, he still has two drainage tubes from his chest. He is receiving oxygen to keep his levels high until he is more awake. He is still on some pain medicine and is staying asleep most of the time. He is a real fighter and we are ready to have him at home soon. Thank you Dr. Forbess and the amazing cardiac team at Children's.

All done

James surgery is done, we got to see him rolling by from the operating room. They said that he did really well and we will be able to go see him soon. We spoke with Dr. Forbess and was pleased with the results. The breathing tube will be removed tonight and he has two drainage tubes coming from his chest. Can't wait to see him.

Time is here

We have reached the time for James next surgery. He is having his Glenn procedure tomorrow. He is Dr. Forbess' second case of the day so our time is set for 12pm tomorrow. James had his pre op today and everything looked good. They checked his oxygen level, his blood pressure, temperature, height, weight, they took blood samples, urine sample, and he had an x-ray. We are all set for tomorrow, the only thing that will stop us is if a more serious case must come before us. but we hope that it won't happen. They will connect the superior vena cava with the lung arteries. The surgery will take approximately 4 hours and they said that recovery might only be 5-7 days in the hospital. I will keep everybody updated on how everything is going tomorrow. Keep us in your thoughts.

Click on the links below for a better explanation.

Glenn procedure

superior vena cava

Ready for next Surgery

In only a week we are going back to Children's Medical Center in Dallas for preparation for James Glenn procedure. We have heard that success rates for this procedure is 95% and we are feeling pretty good about this surgery. What this procedure will do is to remove the tube that is directing blood from the right side of James heart to the lung arteries and instead the surgeon will connect the superior vena cava directly to the lung arteries so the blood comes directly to his lungs. That mean James heart will get less of a load and will only pump blood to the body. This will save alot of work for the heart and James should get more energy after this surgery. We are going to the hospital on Tuesday to get a heart cath done so the doctors will get a clear picture of James' heart. We will probably stay the night and come home Wednesday. Then we are going back on Friday for pre Op, we will get an x-ray, check his vitals and get all the information about his surgery. Monday the 13th is the big day. We are the second surgery of the day by Dr. Forbess, but we still have to be there early that morning. James has been doing great in general. He was 14 lbs in weight and 25.5 inches tall on his 4 month check up with the pediatrician last week. His cardiologist says he looks good and is ready for the surgery. I will keep everybody updated on how it is going.

James 4 months old

Norwood update

We have received updates all through the day since they took James at 9 o'clock this morning. We received updates at 10:24, 11:43, and 12:56, saying that everything was going according to plans. At 2:28 we received the call saying that they had removed him from the heart bypass machine and his newly renovated heart was beating by itself. I also ran into one of the attending physicians that informed me that the surgeon was finishing up the Norwood (Sano). She had been watching the surgery in a different room through a camera that one of the doctors in the operating room was wearing. At 3:04 we were informed that the surgery was done and Dr. Forbess was on his way to come in and speak to us. He came in at 3:28 and told us exactly what we wanted to hear. The surgery went well, he did not loose much blood and he was very pleased with the result. Five minutes later we saw James roll by, coming from the operating room and wheeled in to his cardiac intensive care unit room (CICU). We are finally back in James' room, he is doing pretty well but requires constant watch. He will have a private nurse and ICU doctors will be right there with him for at least the next 24 hours. He is pretty swollen and his heart will be a little swollen for the next day, his chest is still open to have space for his swollen heart, therefore no pictures yet. He is also sedated and will have paralyzing medicine for a while. James has done so well and we are so thankful that he has been so strong, we truly have the best care possible for our boy and the surgeon has been fantastic. Keep fighting James!! We love you so much!! ~Mommy and Daddy

Norwood surgery

James was rolled away and taken into surgery at 9:00 this morning. We met with a cardiologist and we saw the surgeon before they started. We got an update at 10:24 saying that they had prepared everything and they were ready to start the surgery. The surgery should take around 3 hours but could take longer depending on how smooth everything goes and they will need an hour or so to get him back to his room and get him situated. We will be able to see him when they roll him back from surgery and then we will talk to the surgeon when he is done. We will recieve updates every hour to hour and a half. His Norwood might be alittle different from how I have previously described it. They might do the sano instead of the shunt that I was explaining. You can see it on the picture that I posted earlier. The difference is a thicker tube going straight from the right ventricle to the pulmonary artery. Keep us in your thoughts.

Scheduled for Surgery

So, I went to see James tonight and met with the attending physician. They have scheduled his surgery for Wednesday morning. They will roll him away at 7:30 am, this is a big one. We appreciate all thoughts and prayers. This is the Norwood surgery that I have mentioned in earlier posts and posted with pictures. This is probably the most serious surgery and is the most critical one. We are ready for the fight and James is our big fighter! They have been trying to bottle feed him tonight, but he only took a little so they decided to feed him through a tube in his nose straight down to the stomach so he will get energy and get strong for Wednesday.

Uppdatering (Swedish)

Jag har varit dålig på att uppdatera på svenska så jag tänkte skriva en liten sammanfattning till er som föredrar det svenska språket. Som ni alla har förstått så heter våran son James Johan och han föddes den 24:e Februari 2015 klockan 11:50. Han vägde 3050 gram och var 51 cm lång. Att han skulle heta Johan var faktiskt Lindsey's ide' eftersom sönerna i hennes familj ofta tar sin pappas namn som mellannamn. James föddes alltså 11:50 och direkt så fördes han över till Children's Medical Center där dom gick in genom en hjärtkateter och öppnade upp en förbindelse mellan höger och vänster förmak. Detta ingrepp gick bra, men hans blodtryck var lite lågt så de bestämde att följa planen med att sätta band runt lungartärerna för att sprida blodet lite jämnare mellan lungorna och resten av kroppen. Detta ingrepp skedde på Torsdagen den 26:e Februari och var James första öppna hjärtoperation. Själva operationen gick bra och tog en knapp timme. Dr. Forbess som vår kirurg heter var nöjd med operationen och alla värden i kroppen såg mycket bättre ut. Nu vill dom bara att han ska vila upp sig och få i sig lite näring så han är redo för den stora operationen som kallas Norwood operation. Den kommer att ske någon gång mellan Måndag och Torsdag, beror lite på hur han mår och återhämtar sig. Norwood operationen går till så att kirurgen kapar av lungpulsådern i hjärtat och öppnar upp den samtidigt som stora kroppspulsådern öppnas upp. Sen kommer dom att sy ihop dessa så att det blir en stor åder som för allt blod in till kroppen genom en ny kroppspulsåder eftersom den ursprungliga kroppspulsådern var underutvecklad. För att sedan få blod in till lungorna så kommer dom sätta in ett rör gjord av gore-tex som går från kroppspulsådern in till lungartärena. Låter invecklat, men jag vill bara förklara det så ni kan få en bild av hur avancerad operation detta är. Eftersom hans hjärta kommer att bli ett enkammarhjärta och bara pumpa allt blod med höger sida så kommer dom också att skära bort all vävnad mellan höger och vänster förmak så det blir en stor förmak. Det hålet dom gjorde med hjärtkatetern på Tisdagen kommer då att bli vidöppet.

Friskt hjärta


Hjärta efter Norwood operation



 

Klicka för att komma till vårdguiden (HLHS)

Pulmonary Artery Banding

We came in at 6am to the hospital this morning to meet with the surgeon. The surgical team informed us that they had decided to put pulmonary artery bands in James chest. To do this they had to put him under and open up his chest. We met with the anesthesiologist and the surgeon and we received all important information about the procedure. At 11:45 am the anesthesiologist came in to get him for surgery. We were updated after 35 minutes that they were about to start the procedure. One hour later, at 1:22 pm, they were already done. We met with Dr. Forbess in the consultation room and he explained that everything went good and his blood flow was now spreading more evenly between his lungs and the rest of his body, all of his values went up and he will be more comfortable. He was rolled back into the ICU shortly after and we were able to see him for a short while when they rolled him down the hall. We will be able to go back and be with him in about an hour, they just have to get him situated in his room. He still looks the same and we feel so much better knowing we have one step down towards getting his heart better. He is one tough little guy! Thank you all for the support we are getting.

Children's Medical Center Dallas