Thaddeus 70

Thaddeus hams it up with his cardiologist.

Thaddeus (aka Yoda) in front of the fish tank at the hospital back in January.  Thaddeus gets ready for the blood draw.

This past Friday, Dede and I met with Thaddeus’ cardiologist to discuss the results of the MRI. Let me go back to January when Thaddeus’ had his last appointment. At that time, the doctors did a catheterization with the possibility of inserting a stent into Thaddeus’ artery going from his heart to his left lung. From the angle that the cath gave them, the artery looked a bit larger than they thought it would be. After they closed the fenestration (the extra hole in the heart that they put there to be an overflow valve of sorts) his oxygen levels climbed up as well. As such, it was decided not to put a stent in at the time. However, the doctors were still concerned because the cath only gives a 2D view of the artery. They wanted to get a 3D view. That was why the MRI was ordered. From the angle the cath gives us, the artery looks about ½ to ⅓ of the size of the one on the right side of the body. The MRI revealed that the artery is ribbon like. When we look at it from the other angle, it appears, I’d guess, about ⅙  or more the size of the artery going to the right lung. The Dr. admitted that he was not shocked at how small it was, but he was supprised. As best they can estimate, 95% of the blood from the heart is going to the right lung and only 5% is going to the left lung because the artery is so small. Obviously, this is very inefficient. What is worse is that the body will try and make up for this by creating new, small, arteries to the lung. This sounds like a good thing, but it isn’t because they will not improve the blood flow to the lungs and will increase the strain on the heart. This will also create complications when Thaddeus gets a heart transplant some day. The next step is to go back in and put in the stent after all, maybe. The maybe comes in because there is limited space in Thaddeus’ chest cavity. When they put the stent in the artery, it is possible that this would compress the airway to the lung. Increasing the blood flow to the lung is not helpful if the air can no longer get to the lung. So, the plan is to go into the artery and inflate a balloon to the size of the stent, while also going down the nose with a camera to see what happens to the airway. If the airway is ok, they will put the stent in. If it compresses the airway too much, they will quit the procedure at that point. If that happens, then we are looking at another open heart surgery to move and/or reduce the aorta to make more room for the artery. The doctor said there was no medical reason to rush this procedure, so we are planning on doing it in June when life is a little less complicated. The hospital had some special guests.

Thaddeus Update 69

Thaddeus gives a thumbs up after waking up from an MRI. It has been a long time since the last Thaddeus update. That is because he has been doing really well. However, the doctor is still concerned about the size of his aortic arch. Last time they went in to possibly add a stent, but decided not to, at least not until they could get a full idea of the total size of his aortic arch. Hence the MRI today. We will find out in a couple of weeks what they found. He was a real trouper and came through with flying colors; and popsicles.

Thaddeus Update 68

HE'S FIVE YEARS OLD! Our little miracle child was born five years ago, today! Who could have predicted how big, active, and healthy he'd be by now! As you know, he had a procedure done in January to close his fenestration. You also know that after that was done his pulse-ox number went from around 85% to 95%. What you don't know is that he went in a month later and his pulse-ox was up at 98%! Fols with both halves of their heart are usually in the 99% to 100% range. This is the highest he has ever been in his entire five years. (Or as Thaddeus put it, a "long, long, long, long, long time ago I was born".) There is still some concern about the size of his left pulmonary artery (lpa) since in January they only got a 2D view. They can see that it is 'tall' enough to be ok, but as far as they know, it could be only a millimeter 'deep'. They would like to get a better image next time he is in to get a 3D picture. However, on the plus side, they are so happy with how he is doing now that they don't feel the need to do that until October! SO, keep up the prayers, they are working!

Quite a few girl friends for such a cutie.  Playland for being such a trooper at the Hospital. Love for his brother. He was trying to act sad. He couldn't keep it up long.  At the hospital with Clifford Matching Outfits!

Thaddeus Update 67

We survived the night.

Thaddeus managed to get a little sleep overnight in small increments, He is suffering some pain from his incision on his chest. This mixed with regular checks by the nurses meant being awake frequently during the night. Despite that, he has been a real trooper. He has been drinking, eating a bit and even let us carry him to the bathroom twice. The only signs of rebellion we have seen came when the third person in a row came to check him out. Thaddeus hid his face behind his bear and wouldn't look at him. When the doctor pulled up Thaddeus' incision, Thaddeus pulled his shirt right back down. However, he did let them pull off the gauze covering the incision. His O2 stats on his finger and toe are holding steady in the 90s which is awesome. The numbers from the sensor that tries to read the O2 by the kidneys has been lower which is a bit of a concern, but that reading may be being affected by his pain from his incision.  He is getting an x-ray right now to check things out. So far, we are on track to head home later today.

Thaddeus Update 66

Thaddeus' procedure went well.

Our saga began last night. Thaddeus was not allowed to eat after midnight, so we kept him up until 11:30 so that he could eat something as late as possible. However, since they wanted us at the hospital by 6:30, that meant getting up at 4 something or another. There were certain drivers on the road this morning that made sure I was wide awake for the drive down. By 7:30, Thaddeus was being prepped for the surgery. They took some blood and Thaddeus wasn't crazy about that, but when he found out there were stickers involved, he perked right up! The surgeon talked about the procedure with us. The big take away was that they really wouldn't know what they were going to do until they had a chance to look around during the catheterization. That is where they insert dye into his bloodstream and then use an x-ray video to see where the blood goes. The surgeon told us that the most likely scenario would be that they would see that the left pulmonary artery is as small as they think it is and that they would put in a stent. He did not think an angioplasty was at all likely. Also, while they were in there, they were going to check and see if the fenestration could be closed. The fenestration is a bypass valve that the doctors put in at the last surgery. It allows some of the blood to go back into the body without passing through the lungs. The downside to this is that it keeps his oxygen saturation level down a bit. The upside is that it keeps the pressure on his pulmonary system lower. This stops fluid from pooling in his chest and around his heart. They would do this by checking the pressure levels in his system and then basically inflating a balloon in the fenestration and watching what happened. Our surgeon thought that if he put in a stent, he would NOT close the fenestration at the same time. However, I have signed many waivers that proclaim that medicine is not an exact science. To prove that fact, most everything that the surgeon predicted would happen, did not. The left pulmonary artery is quite a bit smaller than the right, but it is larger than it was at the last catheterization. Also, the pressure level in his system was just fine. So, they did the balloon trick and then checked his pressure level. It did not change. Hmmmmm, thought our surgeon. He decided to have a consult with the cardiologist. The two of them looked over the numbers. With the fenestration blocked, Thaddeus' pressure was unchanged, his flow was good, and his oxygen saturation jumped from 85% to 95%. (Normal is 99% to 100%. Thaddeus once got up to 90%.) Based on that, the two of them decided that now was NOT the time to do a stent. It is possible that Thaddeus will still have to have one put in in the future, but the longer they wait, the bigger he gets, the better it is. However, it is also possible, they will never need to do it at all. The LPA (Left Pulmonary Artery) is clearly smaller in appearance, but we care about function. As long as the function is in acceptable parameters, the feeling is not to add more hardware than is necessary. Now this part is cool. When they put the fenestration in, they actually put sutures in to close it again. So, while they did cut him open a bit, they were able to basically yank the thread and close the hole. (I am sure it was a bit more complicated than that, but it was not a full bore open heart surgery.) In addition, while they were in there, they found out that Thaddeus had a bit of a hernia probably caused by the drainage tubes from his previous surgery, so they cleaned that up as well. They only real negative of the entire thing was that a different surgeon was needed to close the fenestration and he had an emergency to deal with. As a result, things took longer than anticipated. Thaddeus went in around 8 am and came out around 2 pm. Obviously, they can't tell us what the emergency was, but I got the sense it came out ok, so we didn't mind waiting longer if it made some other parents have a better day.
We will stay the night while they monitor Thaddeus. (We are two rooms down from one of our other visits.) Assuming all goes well, he will get to go home tomorrow!