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.

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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.

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?