Thaddeus Update 73

Home

We found a playroom while we waited to be discharged.

By Friday morning, Thaddeus was feeling fantastic. He slept until about 7 am, which is good since the nurse told me he was awake until about 2 am. (Dede and I gave up at 11:00). After making a couple of pancakes disappear in record time, we had to wait until rounds before we could be discharged. One of the nurses gave Thaddeus some single use saline containers and showed him how, and helped him, to squirt hospital employees. He would then run away laughing hysterically. It was universally agreed that he didn't need to be in an ICU ward. After waiting for the doctors to "round", we were quickly discharged. Thaddeus had a nice nap in the car on the way home. After we got home and hugs were exchanged, he proceeded to play just as if nothing had happened. When asked what the best part was, he replied: "I got a new Superman blanket." He went on to explain that the second best part was eating two and a half popsicles. On Sunday, I got a special Father's day treat. All eight of us were able to go to the same church at the same service for the first time in I don't know how long. It's good to be home. Thanks for all of the prayers. I'll let you know when the next thing comes up.  TIME TO GO HOME!

Thaddeus Update 72

All is well so far.

I am very happy to report that all things are exceeding expectations at this point. When they inflated the balloons, they were able to use a larger and larger balloon. Each time there was no compression on the airway. As such, they decided to go ahead and put the stent in. As you may recall, the doctor was hoping to be able to get the arch from about 4mm all the way up to 10mm. In fact, she was able to get the stent in at 12mm with no apparent issues. The Dr. watching the airway was careful to stress that he saw no compression on the airway AT THIS TIME. However, there is no particular reason to think that it will be an issue in the future if all is working well now. The stent they put in is able to expand to 18mm, but the doctor didn't think there would be any reason to go above 12 mm for a long time, if ever.  Right now we are waiting for them to let us see him and hang out in his room. They will keep him quiet and still for a while yet, especially since he tends to wake up fidgety and pulling at things that shouldn't be pulled at. Our cardiologist is in the clinic today, so we are also hoping that he will get a chance to pop in and talk.  Thanks for all the prayers. Keep it up.  Oh! They just came to get us to move to his room! Our superhero!

Thaddeus Update 71

Why would I be scared?

Earlier this week, Jeremiah asked Thaddeus if he knew what was coming up on Friday. Thaddeus replied that he was going to the hospital. Jeremiah asked him if he was scared. Thaddeus scoffed and replied "It's just going to the hospital. Why would I be scared?"  So, here we sit in the all too familiar waiting room. Thaddeus has been a trouper, as usual, even though we got him up at 4:15 and he hasn't eaten since last night. As you know, his pulmonary arch is quite small. The doctor told us that it measures around 4mm in diameter. When you look at the MRI results, you can see that the arch is much smaller than the rest of the artery. As a result of this, only about 10-20% of the blood flow to his lungs is going to the left lung. Since the lung isn't getting blood, it isn't functioning at anything like the level they would want. Also, the diaphragm on his left side is creeping up into lung area. Obviously, neither is a good thing long term. So, today, they are going to do a catheterization. They go in through the femoral artery in the thigh and snake it on through to his pulmonary arch. When they are there, they are going to inflate a balloon and stretch out the arch. They'd like to get it to around 10mm if possible. Now, the problem with that is, by stretching the artery to 2.5 times its current size, it is possible that they could compress the airway. There isn't much point in giving the lung blood if it can't get air. As a result, while they do the balloon, a different doctor will be putting a camera up Thaddeus' nose and down into the airway located near the arch. This doctor will be watching to see if expanding the pulmonary arch affects the airway adversely. If they don't see any issues, they will deflate the balloon. There is a very small chance that this will leave the artery large enough and they will call it a day. This is very unlikely and the doctors do not anticipate leaving it like that. They are planning on putting in a stent if all else looks good.  If they see that expanding the arch causes issues elsewhere, especially the airway, they will not put in the stent. If that is the case, they will need to schedule Thaddeus for open heart surgery to move some things around to create more room in that area.     It will be a few more hours before they are done and we can figure out the next step. I'll talk to you after that.

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! 

Thaddeus Update 65

Another procedure. View this email in your browser

The first snow fall!   It has been quite a while since my last Thaddeus Update. Thaddeus has been doing well. He is four now, in pre-school and learning lots. Since the last update, we have been in wait and see mode regarding Thaddeus' heart. The issue has been that his pulmonary artery has not been growing. We have been waiting to see if it would, but at his last appointment it showed no growth. While this is not a danger to him at the moment, it needs to be taken care of before it does cause problems. If the artery is not big enough to handle the flow of blood, his body will start to make new blood vessels from the heart to the lungs to handle the flow. This sounds like it would be a good thing, but it is not. So, on January 5th, we are taking him in to have a cauterization. They will insert a tube into his veins and run it to his heart. They will then give him a radioactive dye that will allow them to trace his blood flow. While they are doing this, they will decide if they want to perform an angioplasty or insert a stent. An angioplasty is where they inflate a balloon in the artery to stretch it out. When they deflate it, the hope is that the artery will stay stretched and will grow to stay that size. This does not involve leaving anything artificial in him, but it is also possible that the artery may simply go back to the size it was. The stent is putting in a tube inside of the artery to force it bigger and keep it that size. The advantage is that it stays there to hold the artery open. The down side is that it leaves something artificial in him, and there have been some problems reported with long term stent usage.(His aorta already has a stent in it.) They will decide which way to go, once they are inside and looking around. In addition, while they are in there, they may also sew up the fenestration that they placed in his heart. This was the overflow hole that they placed in his heart to stop any excess blood, that the heart couldn't pump, from pooling in his chest. In addition, they would like us to get him in for testing to see if he has any developmental issues. It is very common for children with these types of heart problems to have some type of learning issues. From everything we have seen, he is a very smart boy and quick to learn. (Wanting to do everything that Quintin does helps.)  However, we were told the development issues would be subtle, things most parents would not notice. From what I have read, language issues were most common and often were not noticed until the teen years. That’s it for now. More to come.

Thaddeus Update 64

O2 Saturation is up!

Just a quick one to let you all know that Thaddeus had a check up on Monday and his O2 level was up to 87. We are hoping for about 93, but we had been around 83-85 since the last surgery. This number going up is a good sign that we hope continues! This could be because the AVMs in his lungs are finally going away, or it could be that as his lungs are growing (he is catching up to Quintin in weight and height) the part with AVM's are a decreasing percentage of his overall lung capacity. 

For now it just means keeping on with what we have been doing but it is a good sign!

Thaddeus Update 63

Thaddeus is three! View this email in your browser

In honor of Thaddeus' recent third birthday, I decided that it is time for another Thaddeus Update. It's been a year since the last update and medically speaking, not much has changed. Thaddeus is still taking three medications a day but we no longer have to smash them up, mix them with water, and use a syringe to shoot them into his mouth. Now we simply hand him the pills and he pops them into his mouth as easy as can be. This has made med time much easier for all concerned. Well, it doesn't help Charlie since it is her job to fill the pill container. She is just happy that the doses haven't changed in a while. The other big thing that we are keeping an eye on is his oxygen saturation level in his blood. As you may remember, for a normal person, your blood normally holds 95-100% of the blood it can. Just before Thaddeus' last surgery he was around 75% saturation. Shortly after the surgery, he improved to the low to mid 80's. Over time we expected his numbers to rise to the high 80's or low 90's. This has not been the case, however. His numbers have still been in the mid to low 80's. We are realizing that this may be the best he gets. I certainly have learned that despite the fact that our medical team has a great deal of knowledge and experience in general with cardiac children, Thaddeus and his physiology really are unique. His numbers being where they are is not in and of itself a danger to Thaddeus as long as his numbers stay steady. It does mean that we go in for check-ups more often than we would otherwise.Long term, if the numbers don't improve, it will also mean that Thaddeus will continue to tire faster than he would otherwise. That said, it doesn't stop him from chasing, or running from, his brothers all over the house. He is as active as any three year old, he just needs to take more breathers. He continues to grow and develop both physically and mentally. Having five older siblings, he is learning a ton. (Both good and bad.) One of his favorite phrases lately is "That is so hilarious!" Which coming from a three year old, is quite hilarious. Just today, he looked at Sebastian and said "If you say so." He is as sassy, stubborn, and fights with his brothers as much as you would expect a three year old to. We are having some trouble with the potty training but that seems to be related to some gastro-intestinal issues that he has had for years and don't seem to be related to the surgery. So, for now, we are just keeping an eye on his numbers and hanging in there. On a different note, I am going to ask a special favor from all of you. I am very thankful for the prayers so many people offered up, and continue to offer up, for Thaddeus. The favor I ask is that you take a moment to offer a prayer for the father of one of my former students. He was just diagnosed with cancer in many of the bones of his body. His outlook doesn't look good. Please say a prayer for him and for his family. He has always been very supportive of our family and I'd like to return the kindness. Thanks!

Thaddeus' third birthday photo shoot.

Who me? Reading a book. Hanging out.  Just looking adorable.

Thaddeus Update 62

My students some times ask me why God doesn't do miracles anymore. I always tell them that He still does, we just often don't recognize it. For example, two and a half years ago, a technician placed a small device on Dede's belly and from that was able to tell that our unborn baby's heart was not forming correctly. We can explain the science behind it, but if you really think about it, that is amazing. When we met with the doctors at CHW they explained to us the plan. Amazingly, the plan was not to start planning a funeral. Think about the birth. They were able to give Dede a drug to have Thaddeus be born on the day we picked for him to be born. Then they were able to give Thaddeus a drug to trick his heart into thinking he hadn't been born yet so that he could survive the few days between birth and surgery. Then, three different times, they went in and disconnected and  rearranged parts of his heart and inserted extra parts. Just think about that for a moment. They disconnected body parts from his heart and connected them other places. While he was still alive. Then on top of all of those miracles, we ended up with a cardiologist who not only puts up with me, but gets my sense of humor. You can't tell me that is a coincidence! SO does God still perform miracles? Thaddeus is two years old today. He is developing very well physically and mentally. He is active and happy. He even WILLINGLY takes his meds twice a day. Yea, I'd say God still performs miracles. Thaddeus has his two year checkup tomorrow. They will look at his development as well as his health. We expect a good report as his vocabulary is increasing daily and he is forming more sentences. He also loves to play tricks and can be quite clever. His physical development seems to be progressing well also. On the last several checks he was behind about the same amount of time that he has spent in the hospital.  Hopefully this will start to even itself out as time goes on. He also will be evaluated again in March by the cardiologist. We are hopping to lose the two diuretics at that time. The other three meds could very well be  long term. At this point we have no other surgeries or procedures planned. It is possible that he might need to have some procedure or operation done in a maintenance capacity but otherwise there is nothing big until he would need a transplant. Lord willing, that won't be until we have been able to enjoy many more happy birthdays with him. HAPPY BIRTHDAY THADDEUS!

Happy Birthday! Charlie and Thaddeus working out.

Thaddeus is putting a memory card in the computer. He is actually putting it in the right spot! Thaddeus plays chess with his brother.