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.

One week in recovery

It has been one week since James surgery and he is doing well. We hope that we will be out of here this weekend. He was on oxygen until yesterday and he had his last chest tube removed on Monday. After they removed the second chest tube he became more like himself and started smiling and staying awake more. He is graduating from safe at home today, which is the program we have been in from his homecoming until after the Glen surgery. They have been on an 24 hour call if we needed them, they also check in with us once a week to see his weight and saturations. We had a binder where we logged his weight, his saturation, and his feeds every day. We do not have to do this anymore and that is a big relief. So think about James at 1pm. He is doing his first graduation of some sort then.

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.

Surgery has started

James was taken back for surgery at 9:30 am and we received an update at 10:22 that the incision has been made. All we can do now is wait for updates and hope that everything will go as planned. The surgery will take 4-5 hours and we will be updated every hour. The hospital had 2 new babies born yesterday, so our case was moved up. We had to be here at 6:30 this morning. Keep us in your thoughts.

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

New surgery date

We are home again, we were discharged from the hospital around 10 am this morning and we have slowly gotten back in the groove. The doctors said that everything looked good in James heart, no blockage, not much leakage, good pressure in the heart, and he were impressed by the size James has grown into. We have rescheduled James Glenn procedure and the new date for his surgery is August 6th, we will go in on the 5th for preparation for operation. We were really looking forward to have this surgery, but if he wasn't ready we just have to wait for him.

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

Gaining weight

We have finally gained some weight since the flu and James is 12 lbs 3 oz now (5.54 kg). He he has finished 3 whole bottles on his own now, but had a slow day today. James heart catheter has been moved to July 7 th now since he has been sick. So we will hope that we can stay away from sickness and get our second major surgery done soon. After the Glenn surgery James should have some more energy and hopefully we can get rid of the tube.

 

Home

On Sunday evening James was discharged from the hospital. He is doing good and his food had been increased to 27 kcal/fl oz (27 kcal/30 ml). We are staying with that number for now to make sure he can tolarate it. Tomorrow we are going to our cardiolgy appointment and see that everything looks good. We will weigh him, check his oxygen, and have an ultrasound on his heart.

Mother's day stories

3'imperfect' pregnancy = a perfect Mother's day

Here are some stories that were made for mothers day from our hospital. They called Lindsey and asked if she wanted to share her story to them. Just click on the link above and read it. Happy Mother's Day to all mothers.

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.

Swabbing

The nurses swabbed James nose last night to see if he had any viruses in his body and unfortunetly he does. He has the flu, parainfluenza type three. We are so glad that he is admitted and we can only hope that he will be strong and get over this quick. We are keeping him hydrated by only feeding him 70 ml pedialyte every three hours. If he keeps it down he will get back on formula today. We are just hoping that will happen and get back to his normal feedings.

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.

Bottoms up

Saturday evening James finished his first full bottle. We didn't have to use his nose tube at all. This is a big milestone and we are really excited. If he can continue to progress, we can remove his tube. His eating is still not very consistent, so it might be a while. He is eating 65 ml formula every 3 hours, which is pretty low for his age. But his formula is pretty heavy concentrated and gives him extra calories. He also gets soy oil three times a day. He is still gaining weight and he weighed 10 lbs and 9 ounces yesterday. We might not write many posts in a while since nothing too exciting is going on. Next step will be a heart catheter on June 8th, to see if James is ready for his Glenn procedure, and if he is ready, the surgery might be in the end of June. We will defininitly write about that. Thank you all for following our Journey.

Botten upp

På lördag kväll så lyckades James få i sig en hel flaska med ersättning själv. Han behövde inte använda slangen i näsan. Det var en glädjande framgång av honom kan han fortsätta äta hela måltider så kan vi snart ta ur slangen ur näsan, men det ska egentligen mycket till. Det går ganska mycket fram och tillbaka i hans ätande. Han får i sig 65 ml ersättning var 3:e timme och det är en ganska liten mängd med tanke på hans ålder, men hans ersättning är ganska kraftigt koncentrerad och ger honom extra kalorier. Han får också soja olja tre gånger om dagen. Han har stadigt gått upp i vikt och vägde igår 4,8 kg. Det händer inte så mycket annat spännande med James, så det blir nog inte så många inlägg nu framöver. Men nästa inbokade ingrepp är den 8:e Juni. Då ska de in med en hjärt kateter och kolla om James är redo för sin Glenn operation. Är han det så kan han opereras redan i slutet av Juni. Då kommer det komma fler inlägg. Nu kan vi bara hoppas att allt kommer fortsätta att flyta på och se till att han växer. Tack alla ni som följer oss på våran resa.

10 pounds

Yesterday was James 8 weeks birthday and he have reached a massive weight of 10 pounds (4.55 kg). He is doing good and things are moving along. His mom and dad is getting used to the feedings and medications. His brothers are enjoying having little James at home with them.

James´ heart

James heart

Here is a picture the nurse draw of James heart. This is roughly what it looks like now with the Sano tube in his heart.



Helg uppdatering

Nu är det helg och James har varit hemma i 12 dagar. Sedan James kom hem har han ökat 400 gram i vikt. Vi har hunnit med 3 läkarbesök och haft 2 besök av hemsköterska som har kollat till James. I torsdags hade James ett ultraljud på sitt hjärta och kardiologen sa att det såg bra ut. Hans högra hjärthalva pumpar starkt, blodet strömmar fint i hans sano rör, och om jag inte tidigare nämnt det så har de upptäckt att James hjärta har ett litet läckage i tricuspidalis klaffen, men det har varit ganska lite så läkarna är inte oroliga över det, men de håller ett öga på det. Det var fortfarande i den milda graden under ultraljudet, så det var goda nyheter. I måndags så var vi till James barnläkare och kollade vikt, längd och blev vaccinerad. Han var 55 cm och är något mindre än genomsnittet. Han har en del att ta igen efter allt han gått igenom. Läkarna har också ökar hans dagliga mat intag med 40 ml per dygn. I övrigt så ser allt bra ut och han är som vilken liten bäbis som helst.

James Johan
7 veckor

7 weeks old

James is 7 weeks old today and he has been at home for a week now. Everything has gone really well and James is gaining weight. He weighed 4.36 kg this morning at home and yesterday he weighed 9 pounds and 8 ounces at the doctors office and he was 22 inches long. Yesterday was the first visit at the pediatric doctor and James got some vaccines. The doctor thought he looked good and we just need to get James to eat alittle better so we can get the tube out. We had a visit from the cardiac nurse today and on thursday we are going to se our cardiologist and do an echocardiogram on James' heart to see that everything still looks good.

Homecoming

Well, he is home. James came home on Monday. Our 48 hour rooming in went very well and we stayed up all night to get ready for his homecoming. We left the hospital at 6 pm on Monday evening and we went straight home. Mommy, Daddy, Drew, Lucas and Farmor (swedish grandma) was there when he was discharged. We are so happy to have our little James at home.


Leaving the hospital

The boys are home, one is really tired

First meal at home

Getting changed

Snart utskrivning

Under de senaste 28 timmarna har vi vakat över James utan monitorer. Han har tidigare haft monitorer som mätt hans puls, blodtryck, syrehalt i blodet och andning. Nu är det vi själva som kollar det. Vi kollar hans syre i blodet dagligen, vi väger honom, vi ger han medicin 5 gånger om dagen där han har 8 olika mediciner. Alla går igenom hans slang i näsan. Vi har även ett matnings schema som är var tredje timma. Han äter 60 ml per måltid och han orkar inte äta allt själv så resten måste in genom slangen. Så fort han klarar äta allt själv så kan vi ta ur slangen. Vi fick träna att sätta i slangen på James och det var ganska svårt. Det tog 5 försök för mig att få i den. James var inte så glad på sin far då. Vi ska alltså vara här i 48 timmar för att få känna hur det kommer att vara att ta hand om James utan sjuksköterskorna där, men dom finns om vi behöver dom. På måndag är det meningen att James ska bli utskriven och ska få komma hem. Han är en riktig viking och har verkligen visat hur stark han är. Det senaste som hänt är att hans nyliga kromosom test kom tillbaka normalt, vilket var en stor lättnad. Han har stadigt ökat i vikt och vägde idag 3840 gram 30 gram ökning från igår, vilket är exakt den viktökning läkarna vill se. Nu längtar vi bara tills vi får ta med James hem.

Rooming in

We are now at the hospital doing our 48 hour "rooming in". We are practicing the care for James, that we have learned so far. We are about 14 hour in and he is not wearing any leads that measures his oxygen levels, respiratory rate, pulse or blood pressure. We have weighed him this morning, we checked his oxygen level, we give him medicines 5  times a day and he has eight different medicines he takes at different times. We also have a strict feeding schedule, every three hours he gets 60 ml breast milk with added 30 kcal per 30 ml. The nurses do come in and check on him from time to time. We were nervous at first, but now it feels better to look at him to see how he is doing instead of relying on the monitors. We both had to change his feeding tube before we started our rooming in. It was not the easiest task, but we both could get it through. His weight was 3810 grams today and he is doing good. We also took him for a walk in the hallway in his stroller this afternoon. Now it is time to get some sleep to finish this trial.


James Johan (5 weeks and 3 days old)



Daddy's boys

 

 

A Mommy's touch

Another move

James moved out of the cardiac ICU today. He has been doing really good and he is gaining weight. Yesterday was James one month old birthday. He looks great and he might be coming home soon. We have to go through a safe at home program and our test will be a 48 hour stay at the hospital where we take care of him without any help from the nurses. He is also doing great on his bottle feedings. He drank 30 ml at noon today (1 ounce) which is half of his regular meal. The whole family is coming to see James today. It will be so awesome to see Lucas meet his little brother for the first time. We can't wait to bring him home.

Moving along

James is still doing well, he is slowly gaining weight and his magnesium levels are going up. We are going to have a meeting with our social worker and nurse practitioner that is responsible for the safe at home program on Tuesday. After the meeting James will most likely move up to the 8th floor where we will start to care for James more, we will get use to be his primary care taker. We will learn from the nurses, but we will do the work. As for example, we will feed him, we will change his nose tube, we will give his medicine and all the basic things we need to know about our boy's needs. This will be exciting, but also a big change. If everything goes well he might be coming home with us after a week there. It has felt like we only have borrowed James and we are ready to feel like he is our son.

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.

Parkland & Children's

Here are some pictures from our hospitals, as you can see Parkland Hospital and Children's Medical Center are really close to each other. James was born at  Parkland and immediately taken to Children's through a basement connection where he had his first procedure.

Weekend update

I haven't had much to write about this week since James has been doing really well. After they removed his tubes we have been able to hold him again and he has started getting breast milk through a tube in his nose with some added calories to gain weight. There has been some changes during the weekend, he is still doing good but we have had our concerns. When I came in to his room on Friday morning they had changed his bed to an incubated bed. This is just so he will get it more comfortable and less noise around him. His weight has not increased the way they were hoping. They had a blanket over the top so it would stay dark. On that night when my wife was in his room they had to make room for another patient in our room and when they came, my wife overheard their report to the nurse. The patient was a three year old boy that had been running a fever and he had been doing pretty bad a few days. They did not know what was wrong with him... we were really worried as our 17 day old son that just had a huge surgery only 9 days ago would get sick from him. My wife got upset, but she was able to talk to the nurses and they immediately moved James to another room. Good thing they had put James in an incubator that morning so he was well protected from air bourn viruses. It doesn't stop here, at 3 am Saturday morning we received a call from our nurse practitioner that were on duty. They said James is fine, but they wanted to let us know that he had just been having some heart racing episodes. They had been given him a bath and he had obviously been agitated and his heart started making small half beats and then his pulse started going up. The nurse later explained that he had small intervals of his heart raising and that it had lasted up to ten seconds at a time. The highest beats per minutes recorded was at 250 bpm. This had been going on for almost 30 minutes, the heart raising and then back to normal heart rhythm. I didn't know you could get your heart to beat that fast. They told us that we didn't need to worry and they had it under control, they just wanted us to know what had happened. We later found out that the reason for this episode could be because of electrolytes levels had decreased, he is on a medication called Lasix that help him get rid of fluids, when the fluids leaves his body they also bring the electrolytes with them. So the doctors decided to give him extra magnesium to help this issue. He haven't had any other episodes since and we are just trying to bulk up now. On Saturday he weighed 3185 gram. This is good, we have gained a little weight back. The speech therapist has also been visiting James, I know what you are thinking, he isn't talking quite yet, the speech therapists are actually working with his feeding. They are helping James to get introduced to the bottle and helping us fed him the proper way. He will easily get tiered so we can only give him a little milk at the time. He did very well today and they will probably let us feed him some milk on Sunday. The Cardiac Intensive Care Unit has been very full, but we were moved back to our room as soon as it was cleaned out. As soon as they have another room available on the other side of the CICU James will be moved there. That would feel like a step forward. We are on our toes and hoping James will keep staying strong. Also, thank you all nice people that follow our journey and thank you for all the little thing you do for us, we appreciate you.

Breathing tube removal

The doctors were planning on removing James' breathing tube this weekend, but that didn't happen. Everything has been moving smooth and in the right direction this whole time, but this weekend he got aggravated a couple of times due to baths and lowered sedation so his pulse dropped too low to be comfortable and his oxygen levels got low. The heart team decided to connect him to a pacemaker to get his heart in a higher beat. We feel like this was a major step back, but the doctors and nurses assured us that it was normal after these major procedures. They also told us that some patients feel very uncomfortable when they lower the medicines and get distressed with the breathing tube. Their new plan was to get him quickly off the sedation and then remove the breathing tubes when he is fully awake. Finally this afternoon around 5 pm they removed his breathing tube. He has been breathing fine and has also started to suck on his pacifier. We are back on track and hoping that we won't have any major interruptions in James recovery.

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

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.

Moving forward

They removed James breathing tube at 4:50 pm this afternoon and he has been without any breathing help for over two hours now and he is doing great. We heard him screaming and crying... the best sound in the world! He can even suck on a pacifier for a few seconds now.

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.

A big thank you!

Thank you all for the love and support. We appreciate all the gifts and fundraisers you all have given us. We would like to thank friends and family, Eubanks Intermediate staff, students, and EIS Care Committee for all wonderful gifts and donations, my colleagues at General Motors that made a fundraiser for us, and Sisters by Heart (a HLHS organization) for the care package. All help is greatly appreciated and we can't thank you enough. We know this is going to be a rough road both emotionally and financially. So again, thank you from the bottom of our hearts.

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.

James Johan Persson

James Johan Persson

Time: 11:50am

Date: February 24th, 2015

Weight: 3050 gram / 6 pounds 11 and a half ounces

Length: 51 cm / 20 inches

Surgery

We met with the cardiologist today and she confirmed that James will be going in to surgery tomorrow. She explained what the two options are, either they will just put bands around the pulmonary arteries or they will perform the full Norwood operation. It all depends on how he will do until tomorrow morning, the Doctor will make the call then. We will meet with Dr. Forbess tomorrow morning and the surgery will take place tomorrow afternoon. He will be the second surgery of the day and he will be prepped and rolled in to surgery around 11 am.

First Visit

We are finally able to see him, me and Lindsey are in the room with him now. He was ready to take visitors shortly after 5pm. His heart cath went well and Dr. Nugent, the neonatologist came out and talked to me while describing how everything went. He does have some lung damage, but we can just hope that the new tissue in his lungs will grow strong. It went as smooth as he had hoped and James heart had actually provided more oxygen then expected. His decompression vein had done some good after all, so the Doctors could take their time and be thorough. Now we just have to wait and see how he will recover after the procedure. The next step will be to see how his blood will flow and he will need some pulmonary artery bands put around them so the blood will slow down a little. One more thing, I just have to say that he is a very handsome boy. We love you James!

He has arrived

James Johan Persson is born. He was born at 11:50 am today. He was 51 centimeters which is around 20 inches and weighed 3050 grams, it is around 6 pounds and 11 and a half ounces. He was nice and pink in his skin and he screamed as soon as he was born. His oxygen levels were better than expected, around 80% and was rushed over to Children's Medical Center. He is now in the cath lab getting the heart cath done. They are making a hole between his right and left side of the heart and then blowing up the hole with a ballon. Everything looks good so far.

The 38th week

We are now less than a week away from meeting our little boy. We have an appointment with Dr. Santiago later today and this will be the last appointment before the 24th.

This is how much we have grown...

the belly, and...

the beard.

Reality of Heart Children in Sweden

If you want to see what the Children's heart center in Lund, Sweden looks like you can watch this documentary series. Episode 5 has several English speaking parents so have a look. Just push this link.

http://www.svtplay.se/rakt-in-i-hjartat

Dokumentär serie

Har ni missat dokumentär serien som gått på SVT så rekommenderar jag att ni går in på SVT play och tittar, eller klickar på länken nedan och kollar direkt. Där får vi träffa många barn med hjärtproblen bl.a HLHS och följa deras resa. Om ni tittar så möter ni Wille, han är ett exempel på en pojke med HLHS och har lyckats bra, det är vad vi hoppas på för James. Tre operationer senare och han blir starkare och piggare för varje dag som går. Det är ingen lätt resa dom har haft, men se på dom idag. Jag hoppas vi kommer dit.

http://www.svtplay.se/rakt-in-i-hjartat

Support James' Heart

We have been asked if there is anywhere to donate money for us. We have created our own donation site for any of you that want to help us. We do not know what is going to happen or what kind of help we will need, but we truly appreciate everything you do for us. Thank you everyone.

http://www.youcaring.com/medical-fundraiser/support-james-heart/301709

You can push this link or the picture on the right side to came to the donation page.

Parkland Hospital (English)

We only have two more doctor visits until we go in for the big day! This past Wednesday, February 4th, we went for a weekly checkup with Dr. Santiago to see that everything was OK, and it was. We are still scheduled for a February 24th delivery. Lindsey was actually 2 lbs lighter than last week, but she has gained enough weight so it is normal. They also let us know that everyone that wants to be around newborns should be vaccinated for whopping cough (Tdap vaccination), so I need to take care of that. And for all of you that are planning to be here with us, please get the vaccine too so you can see our baby boy. After the visit with the doctor, we headed over to Parkland Hospital; this is where James will be born. It is located right by Children´s Medical Center, but you have to take the elevator down to the basement to get there. The hospital is pretty old and it is a little run down, but I have heard that they have very good doctors and nurses there. This is where our local service men and women (police officers, fire fighters, etc.) are sent in emergency situations, and is also a trauma hospital where they deal with high risk emergencies. Now that we know exactly where to go when the time comes, we can feel it getting closer…excited, but also very nervous.

Parkland Hospital (Swedish)

Nu har vi två läkarbesök kvar tills vi skall in till förlossning. Vi var till Dr. Santiago igen i Onsdags, 4:e Februari och kollade så allt var som det skulle, och det var det. Lindsey var faktiskt ett kilo lättare än förra veckan, men hon har gått upp tillräckligt med vikt så det är normalt. Jag fick veta att dom vill att man skall vara vaccinerad mot kikhosta när man är runt nyfödda barn, så det måste jag fixa innan det är dags. Efter läkarbesöket hade vi även bokat in en rundvandring av Parkland Hospital som är sjukhuset där James skall födas. Det ligger alldeles intill Children´s Medical Center, men man måste ner ett par våningar till källaren för att ta sig under jorden in dit. Sjukhuset ser ganska gammalt ut och är lite slitet, men jag har hört att det är väldigt bra läkare där. Bl.a så skickar polisen och brandkåren dit sina anställda om dom blir skadade i tjänst. Dom skall tydligen vara ett slags trauma sjukhus som är specialiserade på akuta olyckor med extra hög risk. Så nu har vi fått se vart vi skall vara och hur vi skall ta oss dit när det är dags. Det börjar kännas att det närmar sig, jag ser fram emot dagen med skräckblandad förtjusning.

Rakt in i hjärtat

http://www.svtplay.se/video/2630792/rakt-in-i-hjartat/rakt-in-i-hjartat-sasong-1-avsnitt-4

Följ denna intressanta dokumentär på SVT play där vi träffar familjer som handskas med hjärt problem.

Children's Medical Center Dallas

Due Date

Wednesday January, 28th, 2015, we were back at Children´s Medical Center for new ultrasounds and meetings with the cardiologist. We met with two other cardiologists that were already involved in our child’s heart. After meeting with the cardiologists we met with Dr. Nugent a neonatologist that will perform the first procedure on James. We had a long talk with him and he explained how he would go in through a vessel in the groin to put in a heart catheter. He will open up the intact atrial septum so oxygenated blood will come through to the right side. Then they will put the pulmonary artery bands on to slow down the blood flow. They won´t be able to see how much damage the lungs have and how the heart is working until they have done the heart cath. When this procedure is done James will be in NICU and get rest and plenty of nutrition to get big and strong for the Noorwood surgery. Dr. Nugent was pretty straight forward and let us know that his lungs could be damaged and if they don’t get developed enough they will let us know what they can do and it might mean that he is not strong enough for the Surgery. This is a very serious case, but we must stay optimistic. The doctors at UT Southwestern and Children´s Medical Center had a meeting over lunch and they had discussed our case and came up with a date where they would all be available. February 24^th, 2015 looks like be the due date for James. We met with Dr. Santiago at UT Southwestern who is a high risk OBGYN. She will be delivering our baby. We discussed when and how James will be born. A C-section will easier for the team to get ready for, but regular induced childbirth will be better for my wife. Our baby will be just as safe either way, so we are almost positive that we will induce the childbirth on the 24th. We also had an ultrasound to see how James was doing. He is growing and everything looked great, his weight was estimated to be 5 lbs and 13 oz. According to the new plan James will be delivered at Parkland Hospital in the morning by Dr. Santiago. Doctor Nugent’s team will be in the next room to take over, prepare him for heart catheter and connect all necessary machines. Security will stand by, holding doors and elevators for us to get James to Children´s Medical Center as soon as possible. The goal is 20 minutes, so we will be in a rush. We finally have a date, my wife will be 39 weeks and 2 days pregnant. It is getting close, keep your fingers crossed and thank you for all the prayers.

Förlossningsdatum

 I onsdags, den 28:e Januari var vi tillbaka till Children´s Medical Center och gjorde nya ultraljud och träffade Kardiologen. Vi träffade två andra kardiologer som redan varit insatta i vårat barns hjärta. Efter det hade vi ett långt samtal med Dr. Nugent som är specialist läkare på nyfödda barn s.k. neonatalogi. Han kommer att genomföra första ingreppet på James som kommer att vara en hjärtkateterisering, man gör ett ingrepp i ljumskvecket och går genom ett kärl till hjärtat med en katater som ska göra ett hål. Hålet skall göras mellan höger och vänster förmak, så att syrerrikt blod kan komma in till höger sida. De kommer sedan att lägga band på lungartärerna för att strypa till blodtillförseln något. När de har gjort ingreppet så kan de lättare se hur pass skadade lungorna har blivit och om blodflödet fungerar tillräckligt bra. Vi måste sedan bara vänta tills han är stor och stark nog för Norwood operationen och se till att han får ordentligt med vila och näring. Dr. Nugent var väldigt rak på sak och sa som det var. Är hans lungor skadade och inte blir bättre i rimlig tid så kommer dom att berätta det för oss och det är den värsta tänkbara utgången, för då kommer inte en operation vara möjlig för James. Han sa också att detta är ett mycket alvarligt fall men vi måste vara optimistiska men också beredda på ytterligare konsekvenser. Efter vårat besök på Children´s Medical Center så åkte vi till UT Southwestern där våran förlossningsläkare har sin praktik. Hon är specialiserad på förlossningar på spädbarn med exta hög risk. Hon har bl.a förlöst fyrlingar. Vi gjorde ett ultraljud för att se om James växer som han ska. De uppskattade hans vikt till 5 pounds och 13 ounces vilket är 2636 gram. Allt ser bra ut och han växer som han ska. Vi diskuterade när vi ska förlösa och hur. Läkarna var inne på kejsarsnitt, men sa att barnet mår lika bra om han kommer den naturliga vägen vilket är bättre för min fru. Så vi är nästan hundra på att vi kommer att låta James komma den naturliga vägen. De måste bara vara beredda med läkarteamet så fort han kommer. Alla läkarna hade ett möte under dagen och diskuterade vårt spädbarn och det såg ut som den 24:e Februari kommer att bli datumet för våran James. Han kommer att förlösas på förmiddagen på Parkland Hospital av Dr. Santiago, sedan kommer ett helt läkarteam stå redo i rummet intill och förbereda honom för hjärtkateteriseringen och koppla upp honom på alla nödvändiga maskiner. Sen kommer han att rullas över till Children´s Medical Center där ingreppet kommer att ske. Vakter kommer att stå efter vägen och hålla korridorer tomma och hissdörrar öppna. Det är brottom, de sa att det kommer att ta ca 20 minuter att få honom redo. Äntligen har vi fått ett datum! Min fru kommer då att vara 39 veckor och 2 dagar in i gradviditeten. Det börjar närma sig, håll tummarna.

The Decision

On Wednesday, December 31st, 2014 we went for an echocardiogram and consultation with Dr. Kavita Sharma, a cardiologist at Children’s Medical Center Dallas. We had our appointment at 8 in the morning and it lasted until 11:30. We ended up meeting with 5 people during our visit: the echo specialist, cardiologist, nurse practitioner safe-at-home planner, hospital coordinator, and social worker. We started with an hour long echocardiogram that was finished up by our cardiologist. They seemed very detailed during the echo. After that, we met with Dr. Sharma so that she could explain our baby’s situation and surgical plan. We were very impressed with all of the details she shared and she was very easy to talk to and understand. She was extremely knowledgeable about HLHS and the specific condition of our son. Dr. Sharma was comforting but at the same time, she let us know the seriousness of the situation. We soon realized that our baby’s situation was a lot more critical than we had been told. The decompression vein we thought was a huge plus for our baby will not make a huge difference once he is born. This only formed due to the amount of pressure in the heart and lungs. Because of the pressure build up, an intact atrial septum, and not having a left ventricle, the heart and lungs will be under a lot of stress when he is born. Also, this has caused the pulmonary veins to thicken and swell. In conclusion, we learned that his situation is a bit more complicated than just a normal diagnosis of HLHS. We realize now that we can’t rely just on success rates because our situation is very unique. It was really hard hearing all of these details, but we were grateful to hear the actuality of our son’s condition. Dr. Sharma also answered the question that had been on our minds since meeting with Dr. Mendeloff and Dr. Forbess…should we do the Norwood procedure right away or should we do the pulmonary artery bands with the Norwood procedure done a few days later? We feel very confident after hearing her detailed explanation of the bands that waiting to have the Norwood would give our son more strength to handle open heart surgery. Our scheduler also had us meet with the safe-at-home nurse. She would be the person that would train us on how to care for our baby once he leaves the hospital. They showed us the binder we will receive that contains 10 sections on how to care for him, information about his specific condition, and logs for feedings and weight gain, etc. A hospital social worker then came to talk to us about sibling support and help we can receive while he is in the Cardiac ICU. We were told his stay should be around 6-8 weeks based on his condition. My husband and I would like to mention how wonderful the office staff was at Children’s also. They helped entertain our 16 month old son, Lucas, while we met with everyone. They gave him toys, showed him the model trains, and even blew bubbles with him. He left there with a huge smile on his face and waved bye to all of the sweet ladies there! The whole fetal cardiology team was on top of every detail…we were so impressed that they had set up all of these meetings when we had just scheduled the appointment 2 days before! With all this being said, we’ve made our decision. Our son, James will be cared for at Children’s Medical Center Dallas. We have total faith in them! A huge weight has been lifted off our shoulders.

Beslutet

Onsdagen den 31:a December, 2014 hade vi bokat in ett ekokardiogram och rådgivning med Dr. Kavita Sharma, en kardiolog vid Children´s Medical Center Dallas. Vi hade vårt möte klockan 8 på morgonen och det varade till 11:30. Under den tiden så han vi med att träffa 5 olika medlemmar av hjärt teamet: ultraljuds specialist, kadiolog, sjuksköterska som är ansvarig för hem rehabilitering, program koordinator och social arbetare. Vi började med ca en timme långt ultraljud som avslutades av kardiologen. Dom var väldigt detaljerade under ultraljudet och beskrev vad som såg.  Efter det så  träffade vi Dr. Sharma som förklarade hur vår bäbis hjärta fungerade och hans behandligsplan. Vi blev väldigt imponerade av de detaljer hon förklarade för oss,  hon var lätt att prata med och enkel att förstå. Hon var extremt kunnig inom området HLHS och det specifika tillståndet våran son befinner sig i. Dr. Sharma var betryggande, men samtidigt förklarade hon hur pass allvarlig situation vår son befinner sig i. Vi har förstått att tillsåndet vår son kommer att befinna sig i när han tar sitt första andetag är mycket mer kritiskt än vi tidigare trott. Venen som går från vänster sida (decompression vein) in till höger sida som vi trodde var ett stort plus kommer inte att betyda mycket så fort han har förlösts. Den har endast tillkommit genom det enorma tryck i hjärta och lungor. På grund av trycket, en stängd förmak och ingen vänster kammare så kommer hjärtat och lungorna var under extrem stress när han kommit ut. Detta har även gjort så att lung venerna har blivit tjocka och svullna. Vi har nu insett att situationen med våran sons hjärta är mer komplicerad än bara diagnosen HLHS. Vi har även lärt oss att vi kan inte stirra blint på statistik för vår situation är helt unik. Det var tufft att höra alla dessa detaljer, men vi är väldigt tacksamma för deras uppriktighet. Dr. Sharma svarade också på alla frågor vi hade angående aggresiv behandling eller ta små steg innan Norwood operationen och låta bäbisen återhämta sig emellan... de frågor vi hade efter våra möten med Dr. Mendeloff och Dr. Forbess. Vi känner oss mycket mer bekväma med Children's Medical Center och deras teams tillvägagångssätt och tror att om vi väntar 5-10 dagar med Norwood operationen kommer det att ge honom mer styrka för att kunna genomgå en öppen hjärtoperation. Vår schema planerare för dagen hade också ordnat ett möte med en sjuksköterska som gick igenom rehabilitering i hemmet med oss. Hon kommer att träna oss på hur vi skall sköta våran bäbis när han änligen får komma hem till oss. Hon visade en pärm som hade 10 sektioner, den innehöll information om hur vi skall ta hand om honom, information om has specifika hjärtproblem, behandlingar han har genogått och en log där man skall hålla koll på mängd mat han äter samt viktökning etc. Efter det kom en social arbetare in och gick igenom vilken hjälp vi kan få ifrån dem under tiden vår pojke ligger inne på intensivavdelningen. Vi fick höra att han kommer att bli kvar där mellan 6-8 veckor efter operationen, beroende på hans tillsånd. Vi vill också passa på att nämna att all personal på Children's Medical Center var alldeles underbara, de fick oss att känna oss mycket varmt välkommna. De hjälpte oss också att passa våran 16 månaders son Lucas medan vi träffade all personal där. Det var ett verkligt tight team som hade stenkoll på allt. De gjorde ett jätte jobb med att boka in alla dessa möten och undersökningar på nyårsafton bara 2 dagar efter vi ringt och försökt få en tid. Med allt detta sagt, vi har fattat vårt beslut. Våran son, James kommer att bli omhändertagen av personalen på Children's Medical Center Dallas. Vi har fullt förtroende för dom! En stor vikt har lyfts från våra axlar.

Medical City Children's Hospital (English)

On Friday December 12th, 2014 we met with Dr. Eric Mendeloff at Medical city children’s hospital in Dallas for yet another consultation. Medical city is the hospital we were initially referred to and where we met with the cardiologist. This hospital is a little smaller than Children’s medical center. We met with Dr. Mendeloff and he started describing the condition of our baby’s heart and how the surgery would be performed. He wanted to use a more aggressive approach to the surgery and perform the Norwood surgery 4-5 hours after our son is born. It would most likely be on a Monday and the whole team would be ready for the procedure. This is the more traditional way of doing it, as we have read on the internet. Since our son’s atrial septum is closed he wanted to go in and open that up as soon as possible and at the same time continue to perform the Norwood procedure. Dr. Mendeloff is a very experienced surgeon and have performed approximately 250 Norwood procedures under his career. He performs about 25 a year and has only lost one patient with similar problems as our son. He said that he had recently performed 2 successful surgeries similar to our son, with an intact atrial septum. We received a very good impression from Dr. Mendeloff and we liked the hospital. Now we will research our options and decide what surgeon to go with. Difficult decision ahead!

Medical City Children's Hospital (Swedish)

Fredagen den 12 December besökte vi Dr. Eric Mendeloff på Medical city childrens hospital i Dallas för ytterligare rådgivning. Medical city är sjukhuset där vi ursprungligen skulle göra allt på, det var här det började. Vår kardiolog har sitt kontor här och hon samarbetar med Dr. Mendeloff. Sjukhuset är lite mindre än det vi besökte dagen innan. Vi träffade Dr. Mendeloff och han beskrev hur Norwood operationen skulle gå till. Han ville använda ett ganska aggressivt tillvägagångssätt och operera våran son ca 4-5 timmar efter han har förlösts. Det är det mer traditionella tillvägagångssättet, enligt det vi har läst om HLHS behandling. Eftersom skiljeväggen är stängd så måste den öppnas så snabbt som möjligt och det vill därför Dr. Mendeloff göra samtidigt som han genomför Norwood operationen. Det kommer förmodligen att ske på en måndag morgon och hela teamet kommer att stå redo för operation. Han är en mycket erfaren thoraxkirurg och har genomfört närmare 250 Norwood operationer under sin karriär. Han gör ca 25 st om året och han har bara förlorat en patient som har liknande defekter som vår son under de senaste åren. Vi fick ett mycket gott intryck av Dr. Medeloff och vi gillade sjukhuset. Nu vet vi vilka alternativ vi har för operation, så nu måste vi bestämma oss för vilken kirurg vi ska välja till våran son. Svårt beslut!

Children's Medical Center Dallas (English)

We have now met with another surgeon that specializes in congenital heart diseases. This visit took place on Thursday December 11^th, 2014. The surgeon was Dr. Joseph Forbess at Dallas children’s medical center. Dr. Forbess went to Harvard University, did his residency at Duke University and has worked at Boston children’s hospital, which is the leading hospital in pediatric congenital heart diseases. He performs an average of 20 Norwood procedures per year and has a success rate at approximately 95.3% during his last years. Since our son has a few more complex defects his surgery will be more critical. Dr. Forbess explained the different steps he wanted to take with our son’s heart. First he wanted to put in a heart catheter and make an opening in the atrial septum so that oxygenated blood can come from the lungs and be pumped out into the body. When this opening is done the blood flow comes very quickly and to slow down the blood flow he wanted to put on bands on the pulmonary arteries. This procedure has been done in very critical HLHS patients and is used as an extra precaution.  After this he wanted to wait 5-10 days to let our son stabilize and rest and then have the full Norwood surgery. This means three surgeries in his first 2 weeks of life. Dr. Forbess is the first doctor that has mentioned this, is this a good or a bad thing?

Children's Medical Center Dallas (Swedish)

Nu har vi besökt ytterligare en kirurg som specialicerar sig på hjärtat. Detta besök ägde rum under torsdagen den 11 december, 2014. Det var Dr. Joseph Forbess på Dallas childrens hospital som vi hade bokat in rådgivning med. Han har gått på Harvard University och har jobbat på Boston childrens hospital tidigare som är landets kanske bästa sjukhus när det gäller hjärtoperationer på små barn. Han genomför ca 20 Norwood operationer per år och hans lyckade operationer ligger på ca 95,3% under de senaste åren. Eftersom våran son har ett par extra små defekter så ligger risken lite högre för honom. Dr. Fobess förklarade hur han ville gå tillväga med våran sons operationer. Han ville först och främst sätta in en kateter och gå in och göra en öppning i förmaksskiljeväggen så att syresatt blod från lungorna kan komma in och pumpa ut syrerikt blod. När han gör det så kan blodet komma för fort, så att därför vill han också gå in och sätta några band runt lungartärerna för att sakta ner blodtillförseln. Dessa band kallas “bilateral pulmonary artery bands” för att sätta ett namn på det. Sedan vill han vänta med Norwood operationen 5-10 dagar så att vår son kan vila och återhämta sig. Detta kommer att betyda 3 operationer hans första 2 veckor i livet. Detta kan stabilisera honom ett par dagar så han är stark för den mer allvarliga operationen vilket är positivt. Det är dock en ganska ny försiktighets åtgärd som främst har använts vid väldigt kritiska patienter med HLHS, men det har visats sig göra operationen mer säker. Dr. Forbess är den första som har nämnt detta för oss, är det bra eller dåligt?