Thaddeus Update 52

We are back again. Previously on the “Thaddeus Update” the ENT (Ear, Nose, and Throat) Dr. had looked at Thaddeus and decided his tonsils and adenoids looked fine. However, armed with an x-ray, he decided that they were swollen. This led to the decision that surgery to remove the tonsils and adenoids might be warranted. The deciding factor would be a sleep study. Depending on what this found, the tonsils would come out or stay in before the cardiac surgery on the 23rd of October. This is an issue because they have noticed that Thaddeus’ breathing can be a bit obstructed or labored. (The kid snores.) The issue is that this puts extra pressure on the heart and blood vessels. Normally not a big issue, in Thaddeus’ case, they thought this might delay recovery from the cardiac surgery, hence the need to do this before the cardiac surgery. Well, after one false alarm, the sleep study center was able to get us in early. (Dede got a call at 3:00 and needed to be in Milwaukee with Thaddeus by 7:00 but she did it!) As we look at all the miracles that God has performed for Thaddeus through this whole adventure, don’t forget this one. Thaddeus left all of the probes alone and actually slept. There was something like eight on his head and two on his arms and one or two on his face. I did not think for a moment that he would leave them on. Anyhow, this was on Tuesday the 18th and we were set to meet with the Cardiologist on the following Monday. We were told that the results of the sleep study usually take seven to ten days to be received. Dede and I both called people to plead for a rush so that our cardiologist would have the information when we met with him. Thankfully this did happen. So on Monday we found out that based on the sleep study, Thaddeus will NOT have his tonsils and adenoids out. (At least not now.) So we were able to cancel that surgery which had been scheduled for the 2nd of October. This is good because we were concerned about him having two surgeries in one month. They are planning on scoping out his throat next week to see how the vocal cord is doing and if they can determine anything regarding his breathing. We then spent some time talking about the cardiac surgery and the aftermath. It is still set for the 23rd of October. As usual, our discussions were peppered with talk about probabilities and likelihoods since medicine is not an exact science. Oh yea, that and pee. Always with the pee with those folks. (Long time readers will know what I mean.) They expect that Thaddeus will spend about 10 days in the hospital baring any setbacks like infection etc.  He may or may not have the breathing tube in when we see him. Usually they do not, but with his vocal cord issues, and the problems we had last time, he may still have it in. He may also have to go home on oxygen for a few months. Some children see dramatic increases in their O2 saturations almost immediately after surgery, but Thaddeus will likely take a few months to show any major improvement.  He will also be on about five different medications in addition to the O2. Some of these will be only for a few months (diuretic for example, again with the pee), some may be for years if not for life (aspirin and Coumadin for blood thinners). He will also be on a very restrictive diet for a while. Essentially it is as close as possible as we can get to a NO fat diet and still get him to eat. This is temporary and is actually to help reduce fluid buildup and pressure in the vessels. As I understand it, one of the big issues post op will be how the body handles the new volume of blood flowing through. Will the lungs be able to handle the increase? How will the artery be able to handle the pressure? And so on. If you remember from the last update, this is why they will put a pressure release valve that lets blood go to the heart and skip the lungs if the lungs can’t handle all the blood right away. Anyhow, the less the body has to deal with other things, like moving fat around, the more it can focus just on the blood. However, research says that fat is important in children for brain development, so this will be a shorter term thing. When we first get home, they will be adjusting his blood thinners to make sure they are at the optimal amount. As such, for the first few weeks we will need to do weekly blood draws. Fortunately we can have the blood drawn in town and they will send the blood to CHW for us. Longer term we will have to wait and see. In some cases they go back in and cap off the pressure release valve. This could be in a few years, or in 10 years, or maybe never. We will have to continue to monitor him as well. I have also been reading a paper that discusses the research that has been done on cardiac children indicating that they tend to have higher incidences of learning disabilities and behavior problems. The degree of problem ranges significantly, and there are many factors involved. So I have some encouragement to read more regularly to Thaddeus. The cool thing about that is I may start with one child, but usually end up with at least three listening. As I watch Thaddeus critically, I am coming more to terms with the surgery being moved up. His color is off more often than it used to be, and he is taking frequent breaks when active. If we are walking he will either stop and put his hands up to be carried or simply plop where he is and refuse to move. When you do pick him up, he will cuddle in like he is going to go to sleep, but he doesn’t close his eyes and after a few minutes, wants to get down and go some more.  He will play for a while, and then want to stop and cuddle for a while he rests. It seems pretty clear that his body is ready for this surgery. On the lighter side of things, I have two stories from our last doctor visit. When the nurse pulled out the machine to get his pulse and O2 level, he stood still and stuck out his finger and waited for her. Of course after about a minute he decided that was enough and pulled it off. When the cardiologist pulled out the stethoscope to take a listen, Thaddeus put one arm across his chest and one across his belly and said “NO.” He did then stand nicely and let the doctor get a listen. (See the pic below.) Remember to unsubscribe or subscribe click on the links below. To read previous Thaddeus Updates go to Thaddeusupdates.blogspot.com

Thaddeus gets his lungs listened to.  All Clean!

Who says visits to the doctor aren't fun? Thaddeus Loves Music!

Thaddeus Update 51

Rosenthal INC

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. The whole gang! Almost as much as he loves his thumb! He loves his papa! The boys! Yes there is one with Charlie and I as well, but this isn't about her is it! It doesn't get any cuter than this!