Here we are a year later and little Joe is scheduled to have a repair surgery to take care of the failed repair of last year. Update is written by my daughter in the Caringbridge site for Joe (babyjoe).
So…Here We Go Again!
Tomorrow morning at 8am, Joe will be back at the University of Minnesota in the care of Dr. St. Louis and Dr. Bass. One year, 2 weeks and 1 day after his first surgery. How? Why? Here is some “back story”.
At last entry, Joe was recovering from his cleft palate repair. While it was a very difficult recovery, he healed beautifully and you would never know he even had a gaping hole in the roof of his mouth!! He now has 14 going on 16 teeth and they are in the appropriate place
In May, Joe had a 6 month follow-up check and echo at the cardiology clinic at the U. At that time, the echocardiographer had a hard time getting decent pressure readings from the repaired vein. He said it could have been that Joe was pretty wiggly, but Dr. Bass wanted to get Joe in to the Cath Lab again for some good, true readings. Keep in mind that Joe has NO syptoms, shows no signs that there are any problems. So, July 23 we were back at the U for a day in the Cath Lab. To say the results were disappointing is an understatement. Not only for us, but for the cardiac team as well. The vein that was repaired and moved in October was completely closed and Joe’s right lung was only functioning at about 1-4%. The photo attached to this entry is a scan from that appointment. It shows his right lung and the pulmonary vein that was repaired. TThere are 2 veins leaving the hilum (?). The repaired vein is the one on the right. It should continue to the right and go slightly up to the left side of the heart. Instead it just dies off. We knew at the time of surgery that there was a chance that this would happen, but to happen so soon is just sad. We left the appointment not really knowing what the next step would be. We thought that there was a good chance that Joe would just live his life with one lung – the doctors said he could live a normal long life with one lung – just no olympic track team for him!
Dr. St. Louis, Dr. Bass and the rest of the cardiology department had many long discussions about Joe and what the options are. Dr. Bass called us while we were on vacation in New York City in September and said he would like to meet to discuss what they had decided. We went in and were told that Dr. St. Louis would like another shot at gaining function in his right lung. When I asked Dr. Bass what he would do – he said he would like to see more function in that lung and that he (Joe) deserves this chance. That takes us to tomorrow…
The plan is to go through Joe’s right chest wall and access the pulmonary vein where it originates (I believe this is the hilum) and is wider and use some sort of graft (a gortex tube or a chryo vein) to bridge over to the right side of the heart. While this is not the correct side of the heart, the immediate goal is to gain lung function and this should achieve this goal. The advantage to doing this procedure is to get from that vein to the heart is only about 5mm. Joe does not need to go on by-pass because they do not need to work inside his heart. If this works, Joe should have greater lung function. If the graft closes off (and it could) then we are no worse off than we are now. If it remains open they will go back in 2-3 years and move the vein from the right side to the left side of the heart. Short term, the heart should not be adversely affected by the blood flow being rerouted to the right side. This is a creative solution to a very complex problem. As Dr. St. Louis said, with Joe’s anatomy – we need to think outside the box.
Please send your good thoughts and prayers our way. For Joe to come through this with flying colors. For his doctors to be successful in their quest.
Thank you to Kari Pankey for the update!
I will check in with you tomorrow post surgery.
This is written on 11/05/2009