Meeting with the Surgeon

**I added a place at the top left corner of our blog where you can subscribe to our blog by email so you will get an email when we update it. We'll try to put all info. pertaining to Jake's surgery on the blog so it will be an easy way for people to follow the blog if interested.

Yesterday we had our surgery consult with Dr. Heinle and his and PA at TCH. We have had so many people let us know they were praying specifically for us yesterday and we could feel the cover of prayer. We had a peace going into the meeting and definitely after we left the meeting.

We were there about four hours and spent most of that time with Mary, the PA. She is such a precious person and has known Jake since he was a baby during his first surgery. She's always been Jake's favorite person at TCH and that definitely hasn't changed. She answered many basic questions for us and got us "prepped" for our meeting with Dr. Heinle. She gave us more questions to ask and filled us in on details we needed to know.

Dr. Heinle then came in and we talked to him for a good hour. In a very strange way, seeing he and Mary was like seeing old friends. I think it's because they truly understand Jake's heart and really do know it better than anyone else. We're also much more relaxed with him now since this is Jake's third surgery. Here's the gist of our conversation:

• They are baffled with the way this membrane has returned. The development of these membranes is uncommon (maybe in 5%-10% of AV canal defects) and the fact that it's come back is also rare (maybe 10% after a septal myectomy). The strange thing is the pace of Jake's membrane growth....Jake's is growing much faster than other cases they have. They felt the last surgery was very successful and were convinced that the membrane would not grow back or would grow very slowly. Jake's grew at a rapid rate and really got worse this fall. They don't know why or what is causing this. Because of this, they spent a good deal of time at their surgery meeting last week discussing Jake. Dr. Heinle expressed a bit of frustration because things looked so well just before closing Jake up last time.
  

• Dr. Heinle strongly feels that Jake does not need a valve replacement yet. This is where there was disagreement among the other surgeons, but he, as well as Dr. Steltzer (see yesterday's post) do not think Jake is big enough/old enough to merit valve replacement yet. If Jake's aortic valve was replaced it would ensure multiple surgeries in his future.

• He will perform the same surgery as last time again and attempt to cut enough of the membrane out so that it doesn't grow back. He will be more aggressive this time and will also cut into more of the heart muscle (the septal wall tissue) itself so that the path to and into the aorta is as straight as can be (this is called the left ventricle outflow tract- LVOT).

• The membrane grows at the base of the aortic valve and extends around to the lower base of the mitral valve. It's not known how much of the membrane may be on the underside of the aortic leaflet and this will only be found out for sure during surgery. Even if the membrane is located on the aortic leaflet it's hopeful that Dr. Heinle will be able peel off the leaflet without making the leaflet too thin. There's always the risk of damaging the valve when doing this or it may not be able to be repaired so we do have to be ready for a valve replacement just in case (Jake's too young for a mechanical valve). Mechanical valves do last longer but we don't necessarily want to start on lifelong blood thinners just yet. It's really like trying to operate on a very small piece of tissue paper. It's weird to think that right now Jake's potential human donor valve is in a refrigerator at Texas Children's and will be on standby during the surgery.
  

• There is also a greater risk of a pacemaker this time since he will do a more aggressive resection. This wouldn't be in the end of the world, but we would prefer for Jake not to have one. He would have it his whole life.

• His EKG results (the Holter monitor test) were good!

• I told them the ENT wants Jake to have tubes in his ears. They will not allow those to be put in during heart surgery, but think it's a wonderful idea to prevent ear infections in the future, thus making Jake healthier, all better for his heart. They would rather him wait until April to have them put in and do the heart surgery first. If Jake happens to get an ear infection in the next month before surgery, they would put tubes in and move back his heart surgery. Please pray he stays healthy!!! We don't want a postponement.

Many people have asked us if this next surgery will "fix" Jake or be his last one. There is not a cure for CHD; it is a lifetime journey. Jake was born with a simple CHD, a hole in his heart. When that was patched, the surgeons fully expected him to live 20-30 years before ever needing another repair. They expected him to possible need a new Mitral valve as an adult. Then, he developed the sub-aortic stenosis, another seemingly "easy" CHD. For some reason, Jake has a very stubborn case, and one that they just don't understand. It will be a lifelong journey because it won't ever just go away; he will always be under the care of a cardiologist. Our fervent prayer is that after this next surgery, the obstruction will stop growing or DRAMATICALLY slow down. We'll just have to pray harder about this. Whatever happens, the longer we have the better as it opens up a couple of other options for procedures that have had good success rates or if he's older it may be good to go with a mechanical valve.

We feel very confident after yesterday's meeting. We have the utmost confidence in Dr. Heinle and his staff; they are the best at what they do and will do another phenomenal job operating on Jake. We wish to goodness that there was a surgery that would be a magic fix so that Jake could be "normal" and get to play soccer with his friends and bounce in all the bounce houses his heart desires. However, we are thankful that they are doing what is best for Jake right now and that we have a surgeon who is willing to be cautiously aggressive. Many surgeons might be tempted to rush in and replace the valve which would more than likely get rid of the membrane growth but create a whole new set of challenges.

Once again, we just want to say thank you for all of the prayers. We are humbled and overwhelmed to say the least. Please continue to pray for the surgeons, for Jake's good health leading up to surgery, for Jake's emotional well being during surgery and after, for Ty and I's ability to care for Jake, and for Grace as she will have stay in with Jake before and after surgery and will have to be away from us during the week of surgery quite a bit. Thank you!