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. 

Almost 9 months old

James will be 9 months old on Tuesday. He is doing really well and is growing a lot. He is only seeing his cardiologist every other month and his eating has improved tremendously. He still has the tube in his nose and get his formula and medicine through it. He has started eating really good, and he is eating all kinds of fruits, vegetables, and meats. He is not drinking enough yet so that's why he is still using his tube. He is not vomiting much anymore either. We are very pleased with his improvements. He was measured and weighed on Saturday when he received his vaccination for RSV (respiratory syncytial virus) and he weighed 18 lbs and 3oz (8236gram) and he measured 27 inches (68cm). He will receive 4 more shots of the vaccine this winter because they only last for a month and he is a high risk baby and needs to be protected against this virus. On Tuesday he has his 9 month check up with his regular pediatrician to see if he is following the growth charts. Happy Thanksgiving to everybody!

James 9 months old

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.

Feeling better

We are two days after his surgery and James is getting better, he is looking more like himself now. He is still in some pain and getting quite a bit of medicine. The doctors have said that with the new anatomy of his heart there will be a completely new pressure in his head. It will take a few days to get used to so his head is probably hurting a lot. His chest and the tubes are probably not very comfortable either. He is looking good though and he is eating his regular dose of formula again. So hopefully we are back to being happy little James again in just a few days.

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

Heart Cath

We are in recovery from having James heart catheter done today. He is still sleeping, but will wake up soon. His leg needs to be still 4 hours after the catheter so he needs to lay flat and his leg is tied down. Everything went really well, but when the anesthesiologist was taking out his breathing tube he stopped breathing and they had to give him medicine to relax his lungs and they gave his some help getting his breath back. The doctor believe that he still have some traces left on his lungs from the flu, he had in the beginning of May, and they believe that is why it happened. Therefore they have decided to wait a few weeks with the Glenn surgery. Hopefully we do not need to wait to long for the procedure. But better to play it safe than take any risks. We will stay the night at the hospital and then we will all go home in the morning. We will post the new surgery date as soon as we have gotten it scheduled.

Ready for heart catheter

Nästa operation närmar sig

På måndag den 13:e juli är det dags för James "Glenn operation" och vi ser fram emot att få hans andra stora operation genomförd. Glenn operationen innebär att kirurgen först och främst tar bort röret som blivit insatt under den första operationen (Norwood), vilket leder blodet till lungpulsådern, sedan kommer kirurgen att skära av och koppla in övre hålvenen direkt till lungpulsådern så syrefattigt blod kommer direkt till lungorna. Detta innebär att hjärtats högra sida nu bara kommer att pumpa blod till stora kroppspulsådern vidare till kroppen och lungorna får då sitt blod från hålvenen som kan växa med James övriga delar i hjärtat. James hjärta kommer då att minska arbetskraften och han kommer att få mer energi över. En skillnad är nu bara att det är hjärtats högra sida som pumpar blod till kroppen istället för den vänstra som hos ett normalt hjärta. Blodet som kommer från hålvenen är syrefattigt så han kommer fortfarande att kunna bli blå om läpparna när han blir ansträngd . I övrigt så mår James bra, han vägde 6580 gram igår och han var 65 cm lång när han mättes hos barnläkaren förra veckan, då han var på sin fyra månaders koll. James skall undersöka hjärtat med en hjärt kateter på tisdag, på fredag ska han förberedas inför operationen med röntgen, blodprover och andra tester och sedan på måndag är det den stora dagen.

Glenn Operation

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

Getting better

We are still at the hospital as of Sunday morning. James has been doing well and he hasn't gotten any worse. He still has a cough and he still has a stuffy nose. He is back up on his feeding with almost the same formula as he had when he was well. We started giving him 10 calories per fluid ounce yesterday, then he moved up to 19 cal/fl oz, then 24 cal/ fl oz, and this latest feed he got 27 cal/ fl oz. They will keep him at that for a little while and then he will get back at 30 cal/ fl oz, which has been his normal energy intake. The doctors came by earlier and they though that he was doing really well. They said either he did not get a serious case of the flu or he is a true fighter, we decided to go with the latter. He really is a fighter, how much can you go through and still have a smile on your face? He is doing so great and we are very proud of him. We are also allowed to bring him home today, we are just waiting to see how his feedings are going. He might stay until tomorrow morning, just to be on the safe side. He has been away from the house for almost 72 hours now, but be are so glad that we found out that he had the flu and got help so quickly. Children's medical center has really taken care of us and all the staff is amazing. We are so grateful to have them in our family. We tried to give him the bottle this morning, but he was not interested. We will take it slow and hopefully get back to it soon.

James 10 weeks back at CMC Dallas

Observation (Swedish)

Vi är tillbaka i Dallas på Children's medical center med James. Han har inte varit sig själv de senaste dagarna. Han har ätit dåligt, varit lite gnällig och spytt mer än vanligt. När vi var på vår vanliga torsdags koll hos kardiologen så bestämde de att det var säkrast att lägga in James på sjukhuset. Eftersom hans immunförsvar är lågt och hans hjärtproblem är alvarliga så kan allt svänga fort för dessa känsliga barn. Han har hosta, är snorig i näsan och har som sagt inte ätit mycket från flaskan. Han har även tappat lite i vikt. Han var över fem kilo i måndags 5,09 kg för att vara exakt, men igår när vi kom till sjukhuset vägde han 4,95kg. De tog några prover för att se om han hade någea virus i kroppen och det har han. Han testades positivt för influensan. Han har parainfluenza typ 3, vår skötetska sa att det finns minst 50 olika typer av influensa och har man inte rätt vaccin så kan man bli sjuk. Skrämmande att han fått influensa, men vi vet att han får bästa möjliga vård här. Vi kan bara vara tacksamma att de bestämde att lägga in honom igår. Han kommer stanna i minst 24 timmar för observation och de vill se till att han äter normalt och inte spyr upp något mer innan han får komma hem. Han får bara i sig vätska med elektrolyter just nu för att se om han kan hålla det nere och hålla upp vätskebalansen. Går det bra så kommer han återgå till mjölkersättningen. Hans mängd just nu ligger på 70 ml var tredje timme. Vi hoppas han kryar på sig snabbt och kan börja äta normalt så han kan fortsätta lägga på sig i vikt.

Back in Dallas

James has been having some trouble eating and has been throwing up alot lately, so at our regular cardiology visit today our cardiologist decided to admit James to Children's Medical Center in Dallas this afternoon. He has had a cough and his nose has been running a few days. Since he is vounerable to infections, he will be here for atleast 24 hours for observation. He is on a light diet and will be closely monitored. He has also lost some weight these last couple of days. We are just hoping he can fight this off real quick and get back to growing and eating. He was over 5 kilos for the first time this monday, but right now he is slightly under. We hate to be back here, but is feels good to know that he is in good care and we can get all questions answered. Maybe we can also get some help to get him to eat more. He only had one bottle all by himself and then it kind of leveled out and actually decreased. Well, we are back here in Dallas and we will get well soon and go home.

Efter operationen (Swedish)

Nu tänkte jag göra en liten uppdatering på svenska igen om det är några oklarheter som ni inte snappat upp på de engelska blogginläggen. Kommentera gärna om ni tycker det är dags för lite förklaringar på svenska. Vi har ju inte fått några svenska kommentarer ännu. Norwood operationen som James hade gick bra de gjorde en variant av Norwood som kallas sano, vilket betyder att de gjorde samma saker med lungpuls ådern och Stora kroppspulsådern som var underutvecklad och satte ihop dem. Sedan så satte kirurgen in ett större rör som går direkt från hjärtats högra sida in till lungartärerna som gör att det kommer mer blod och det kommer inte att kunna bli blodförstoppning lika lätt som i ett tunnare rör. Detta är en lite nyare variant och har haft större framgång de första månaderna i livet. Han behöver byta ut kommunikationen mellan hjärta och lungartärer när han växer och då kommer vi till nästa operation, men det är ett annat kapitel. Nu ser han hjärta ut ungefär såhär.

 

 

Sedan operationen så har James börjat gå upp i vikt och han hör börjat dricka lite mjölk själv ur flaska. Än så länge har han bara druckit ca 10ml per måltid, resten får han i sig genom sin slang i näsan. Det har varit två lite skrämmande incidenter med James sedan operationen. Den första var att hans puls gick ner skrämmande lågt så de var tvungna att koppla in hans hjärta på en pacemaker under en natt för att hålla det i schack. Sedan har hans puls också gått upp skrämmande högt. Pulsen stegrade upp högt och sedan ner igen till normal puls under ca 30 minuter, den högsta pulsen de registrerade var på 250 bpm. Detta berodde på att hans magnesium nivå var för lågt, så han har fått medicin för det så att de skall gå upp igen. Detta kan i sin tur bero på att han också har en medicin som kallas Lasix som är vätskedrivande och det gör att han kissar ur sig viktig näring. Den senaste veckan har allt sett bra ut och James fick i måndags flytta till andra sidan av CICU avdelning där det är lugnare och för patienter som gör framsteg. Vi kommer också att ha ett möte med social arbetare och en Sjuksköterska som är ansvarig för att lära föräldrarna att ta hand om barnet när han/hon kommer hem. Så han kommer kanske att komma hem snart. Först kommer han flytta till 8:e våningen där vi kommer att ta hand om honom mer och lära oss allt vi behöver veta om hans vård. När vi sedan lärt oss och känner oss bekväma med allt kan han äntligen flytta hem.

Recovering from Norwood procedure

James has recovered well and he is waking up periodically. They sewed up his chest yesterday and two of the four tubes he had in his chest are removed. He is also getting less and less medicine. The doctor told us that his breathing tube will be removed sometime this weekend. After they remove the tube he will be able to start getting breast milk again. He will either eat it from a bottle or he will get it through a tube in his nose. He is not as swollen anymore and his numbers looks better. He is still doing very well from what all he has gone through and we are hopeful that everything will keep moving this direction. The doctors are saying that his recovery time will be somewhere between 6 to 8 weeks before he can come home if everything goes smoothly. With the most crucial surgery behind us, the Norwood, we are now only focusing on James' recovery and him getting bigger and stronger!

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

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)

Recovering from his first surgery

James has been doing good today and he has recovered well from his surgery. His blood pressure has been a little low so they have added volume to get it higher. He was taken off the medicine that was keeping him paralyzed and sedated. They hope to get the breathing tube out in 2-3 days and will start feeding him and the goal is to do it orally. All the doctors seem pleased and says that he is doing well. Now we just want him to rest, start eating and get stronger and ready for the Norwood procedure. He will have the Norwood procedure sometime between Monday and Thursday next week.

Click to see web site

 

What the Norwood procedure does is to connect the aorta with the pulmonary artery so all blood will be pumped in the aorta supplying blood to the body, secondly a Gore-Tex tube will be attached on the branch of the aorta down to the pulmonary artery to get blood back to the lungs. This way the right side pumps blood to both the body and the lungs. They will also cut all the tissue between the right and the left atrium out so it will be one big chamber.

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.