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



 

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