Hello again one and all. Last time I wrote, I mentioned that Thaddeus had some tests done and they indicated that his oxygen levels are going down due to a narrowed pulmonary artery and his body making “highways” through his lungs so that the blood doesn’t get properly oxygenated. This indicated to the doctor that his surgery would need to be sooner rather than later. What I didn’t understand at that time was how much earlier it would have to be. Apparently, once the body starts to make these “highways” in the lungs, there is no reason to think that it is going to stop making them. As such, his oxygen saturation is most likely going to continue to drop to the point where he would have to go back on oxygen and I can’t see him leaving the tube alone. We have noticed at home that he is getting blue around the lips and fingers more than he used to. I had also noticed a tendency for him to like to come over and cuddle with me. I thought he was going to sleep but then after several minuets, he would climb down and go play again. He would repeat this several times. I thought it was an evil plot to make sure I didn’t get any school work done, but I wonder now if it was him taking a breather because he was getting tired from playing. Otherwise he is active and plays happily most of the time, although he is not happy about school starting. I started to walk away from him the other day to go to school to do some work and he looked at me and said “No!” and then walked over to me. We ended up playing for an hour before I had the heart to go to school!
Anyhow, the surgery is now scheduled for Tuesday, October 23rd, at 7:30 AM. The good news is that since we are early in the morning, we should be on time since there won’t be anyone else in front of us. The bad news is that we will have to have Thaddeus to the hospital probably around 5:30 am. Our plan is to have Dede take Thaddeus down on Monday to have his pre-op check done. Then she will come on home and get us packed. Meanwhile I will have parent-teacher meetings after school. Since I won’t be able to do any of the meetings on Tuesday and Wednesday I will try to get some done early and then do the rest Monday night. As soon as I am done we will head down to the Ronald McDonald house, assuming we are able to get a room. (You can only reserve a room up to 5 days before you need it.) That way we will be a lot closer and won’t have to get up at 3:30 or 4:00.
I have an appointment with the cardiologist on September 24th to go over the surgery, but as far as I understand now this is what is going to happen. My apologies if I get any of it wrong.
During the surgery, they will do several things. If you remember, in a normal heart the oxygen rich (red) blood and the oxygen depleted blood (blue) are kept separate. The right side pumps the blue blood to the lungs and the left side pumps it to the body. Thaddeus’ right side of his heart doesn’t pump, nor does the heart keep the blue and red blood separate. This is why his oxygen numbers are always lower. The blood that gets sent to his body is both the blue and the red, instead of just the red. His second surgery disconnected the artery on the top of his heart (the Superior vena cava) from his heart (the right atrium). They then rerouted it to connect to the Pulmonary artery which takes the blood to the lungs. Normally the blood would go into the heart and be pumped to the lungs. Now it just falls there due to gravity and also due to the fact that the other side of the heart is pushing more blood behind it. However, the Inferior vena cava (the artery that comes from the bottom part of the body and comes into the heart) is still bringing blue blood into the heart that then gets shot out to the body without getting oxygenated. It also doesn’t get the enzyme that it picks up in the liver to stop the “highways” from developing in the lungs to the lungs. So, in this surgery they will disconnect the artery (Inferior vena cava) from the right atrium and will also route it directly towards the lungs using the pulmonary artery. However, one of the issues Thaddeus is having is that the Pulmonary artery is narrowed and is not handling the amount of blood flow it should already, even before we increase the blood flow. So, they are going to insert a tube into the artery to make it larger to let the blood flow faster. Even this may not be enough to make his body handle all of the increased blood flow. If it cannot handle it, then the blood tends to pool in places it has no business being. So, they will also insert what can best be described as a pressure release valve (at least as I understand it). This will allow blood to escape directly to the heart if the artery cannot handle getting it all to the lungs. The bad part of that is that it will be blue blood and then will mix with the red blood as it does now; thereby keeping his oxygen numbers lower than we would prefer. This is not life threatening but is a bit of a bummer. However, this is much better than letting the blood pool in other places. Eventually his body will grow and adjust in order to handle the pressure and the valve will become obsolete. At that point the doctor will go back in and “cap off” the valve.
I don’t yet know exactly what will all happen once the surgery is done. I know they are planning to keep him sedated for a few days. This is normal procedure since they are so active and squirmy at this stage. Considering he tried to pull out his breathing tube at 6 months, this makes sense. I think it also gives the body a chance to adjust to the change in pressures before he has to fully feel the effects. I know this was the case after the second surgery, so I imagine it is even worse this time around. I also understand that he will be back on more medications after the surgery to help his heart out and thin the blood ect. I don’t know how long he will need to be on these drugs. I know one of them will be a diuretic because one of the complications of these surgeries is water collecting around the lungs. I would think that that drug could be discontinued eventually, while the blood thinners may continue longer. (The aspirin at least is life long I believe.) As far as I understand, they will let him come out of the semi-sedated state possibly after a few days. After that it all depends on how he does. They told us to plan for 10-14 days in the hospital. This of course assumes no infections (We are quite familiar with that by now.) or other complications.
We asked if there is any problem with having to do the surgery now, instead of later like we had originally planed. Apparently, many hospitals perform the surgery at 18 months automatically as long as the child meets a minimum weight. CHW simply likes to wait as long as possible and let the child’s body tell them when it is time to have surgery rather than stick to a certain age. In this case, his body is telling us it is ready now so we will go now. He will be just over 20 months at the time of surgery.
Oddly enough Dede and I are defying stereotypes this time around. She is being very pragmatic about it. She knows it will help him feel better and is the best thing for him and she is ready to go. I am getting there but having a bit more trouble with it. When I watch him play and hear him laugh, it is hard for me to think of him being sedated, still and confined to his bed again. However, we are both trusting in God to keep him in his tender loving care and taking comfort in the knowledge that Thaddeus’ faith gained through his baptism guarantee us a happy ending no matter what happens.
Now I know this one got pretty long, so I will reward your patience with a huge does of cuteness.
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Almost as much as he loves his thumb!
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The boys! Yes there is one with Charlie and I as well, but this isn't about her is it!
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It doesn't get any cuter than this!
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