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.

These are a bit dark, but I thought they were cute!

Thaddeus Update 61

Hello again. It has been a few days since my last update and I know some of you are in with-drawl, so I am here with your next fix. The past few days have been good but also frustrating, which describes pretty well how Thaddeus has been also! On Friday we moved from the CICU on the third floor, to the recovery area on the 8th floor. This means that they felt he was no longer critical. They do keep a close eye on them on the 8th floor, but each nurse has several patients instead of just one or two. They also check in less often and aren't as quick to come running when an alarm goes off. However, they do have a pager that goes off every time one of the alarms rings. This became an issue because Thaddeus set off alarms quite frequently. Some of the time it was simply a matter of him knocking sensors off. Much of the time it was his pulse ox sensor that was causing the alarms bell to ring. This sensor measures his O2 level in his blood. It is a small sensor with a glowing light that wraps on a finger or a toe. On a normal person the pulse ox should be 98 to 100 percent. Thaddeus' had been in the low 70's to high 60's pre-op. This was the main reason his surgery got moved up. A low number is not critical in and of itself, but it does give the heart more work to do and of course that is an issue.  Before we left CICU, he had ripped off his O2 hose, tape and all. The doctors decided that it was as good a time as any to see what his numbers would do off of the O2.   The problem we ran into was that post-op his O2 numbers ranged from the low 60's to low 80's. He often would hang around 77 which is spot on where they would like him to be, but he wouldn't stay there. So, after only two hours off of the O2, his numbers took a dip and the nurse on duty put the O2 back on. We would have preferred that they give him more of a chance to see what the numbers would do. This then became our frustration for the next several days. People tend to want to reduce things to formulas, flow charts and numbers. If we teach our children this way or with this assignment, they will all learn. If only the government would do this, the economy would improve. If his numbers are this we should do that. However, life doesn't work this way. Each child learns a different way. When we change a law we help part of the economy but not a different aspect of it. In medicine, each child is different, needs different things, and will respond differently to treatment. Now take that reality and spread it out over 10 doctors and 40 nurses with some PA's thrown in as well. Then on top of that, add in two parents. The result was that Thaddeus' O2 level and the number he needed before the alarm bell went off got changed more often than his diaper did. Since there is no exact, one size fits all, way to do this, each doctor had his or her own idea of what was best. In the end it was agreed that Thaddeus should have some O2 for a while. The question did come up if the O2 was doing any good at all since the blood is not taking time to get oxygenated in the lungs due to the "super highways", what good does it do it to send more O2 into the lungs? The docs agreed that in those spots the O2 would do no good, but it would help the other parts of the lung that are currently taking the load. So he is now on 1 liter of O2. How long will he be on the O2? Good question. Wish I knew. After all of that I finally realized that while I was just trying to figure out what was going on and what Thaddeus really needed, I realized that the doctors were in the same boat. It really hit me how unusual it was for Thaddeus to develop the AVMs (super highways for the blood in the lungs) when one of the doctors had to stop to explain it to his medical students and resident because they hadn't heard of it before. The other good but frustrating fact is that the better your child does, the less trained and less authorized to make decisions are the people you interact most with. There is always someone else on top of things and that is perfectly fine and fitting at a teaching institution. It is perfectly logical. However, it is tough to be logical when your baby is in the hospital. That said, the individual people we had were all great. They are a really nice group of people who will do whatever they need to for their patients. In the meantime Thaddeus started to eat and drink again. He started off slowly but then gained speed. He did this by refusing to eat his food and stealing ours instead! We did our best to make sure we got low fat food so we could share, but one night we did break down and get hamburgers. We ate them behind the curtain so he wouldn't see! Our biggest struggle was to get him to take his meds. We tried to sneak them into his drinks. He responded by only drinking plain water most of the time. He also would sip any drink first before he would take a big drink. I am convinced he was checking for meds. When they tried to get him to drink his meds he would get so worked up that he would throw them up. In fact he would start getting worked up and fighting as soon as they scanned his anklet since he figured out that meds were to follow. Keep in mind that in the morning he has 6 different meds he needs to take. We eventually figured out that it worked best to get pills instead of liquid, crush them and give them to him all at once. I can't imagine how nasty that tastes, but it worked. Speaking of figuring things out, when ever they came to check his blood pressure, he would stand with his arm out and wait. Of course he would look at the nurse and say "NO." but he'd wait for them to put it on. The doctors are continuing to do chest x-rays (this kid is going to glow in the dark soon) to make sure fluid doesn't collect around the lungs. They continue to get better and better each time. They will continue to monitor his 02 numbers. In fact, we have a pulse-ox machine at the house to monitor it each day. This number should climb over time, but it will be a slow process. It takes time for the AVMs to go away. Also, there is the pressure release valve that is built in to the connection they just made. When the blood from the lower part of the body goes into the pulmonary artery (now by passing the heart), some of it can pass directly into the heart. This stops blood that the new system isn't ready to handle from pooling elsewhere, but it also allows some of the blue blood to mix with the red blood. Hopefully this will also lesson as the body adjusts to the new arrangement. I get asked a lot if this is his last surgery. This is the last scheduled surgery for the foreseeable future. As of right now, we assume Thaddeus has a heart transplant in his future. There also can be complications that would require surgery, but as for now, we are back in wait and watch mode. We will have weekly blood tests for a while and a lot of follow up visits to Milwaukee. They are still tweaking his meds and of course want to keep an eye on the lungs and heart. This should slow down after a while and hopefully we will lose some meds in about six weeks. The other meds will be long term, if not for life. The other big question that you have been waiting for me to answer is when do we get to go home. Well, I am happy to tell you that I am writing this from HOME! We just came home a couple of hours ago! I can not tell you how impressed with, and proud of, my son I am. This is one tough little guy. I also want to thank all who helped out this past week. Special thanks to my sis and her hubby and Dede's sisters who came to stay with the other kids while we were in the hospital. Neither Dede or I got a lot of sleep this past week, but that was not because we were concerned about the other five. Thanks also for all of the prayers. The Lord has blessed us with Thaddeus and with so many brothers and sisters in Christ to pray for him and us. On that note, picture time!

PLAYING WITH CARS! GOING FOR A WALK PLAYING Wii! (well, sort of) DUPLOS!  QUINTIN HAS HIS BABY BACK!

ALL THEY LET ME DRINK IS WATER OFF A SPONGE! YEA! CHARLIE IS HERE! HAPPY REFORMATION! READING WITH MOM! PLAYING IN THE CRIB

Thaddeus Update 60

The O2 went back in and we are heading up to 8th.

Thaddeus Update 59

Quite a bit has happened since I last sent an update. I'll try to hit the main points and keep it short. During the night, they decided to take out the two remaining chest tubes. They also removed the catheter. In addition they removed the IV lines. This means that the chest was fairly dry. There is still a danger of fluid near the lungs so he will be on a diuretic for upwards of several months. Removing the IV lines means that they are fairly confident that he will drink enough to keep from dehydrating. Now that the chest tubes are out, they are able to think about reducing his O2. Well, they would have been except as they walked into the room on rounds, he grabbed the O2 hose and ripped it off of his face. Did I mention it was tapped on both cheeks? They decided to go with it and are going to monitor his numbers for a few hours and see how he does without O2. Since he was high 60's and low 70's at home pre-surgery, they figured as long as he was 70 he would be OK. This number should go up over the next few weeks to months. Well, right now, he is sitting in Dede's lap watching Finding Nemo and his numbers are around 77. With no O2. We were even able to give him a sponge bath. If that keeps up, he won't need O2. If that dips, he will have to go back on the O2.

Since he is doing so well, they are planning on kicking us out of CICU today and sending us up to the 8th floor where general recovery is. We do not have a timetable for discharge at this point. They are still watching some things and are still tweaking how much of each med to give. He will be on a restricted low fat diet for six weeks. We just got instructions on that. Fortunately, many of the things she suggested we do, we already do. Although, as Wisconsinites, watching the cheese intake will be a challenge! 

Thaddeus Update 58

Waiting for Surgery   Just After Surgery

Losing Tubes and Wires and Getting a Thumb! Sitting Up

Food and such.   When we last visited I mentioned that we were allowed to try and give him some yogurt. You may remember that after the last surgery we were concerned about him having headaches because the pressures in his head would be different after the surgery. This surgery is for the lower part of the body, so instead of being concerned about headaches, we are concerned about gut aches. So eating and drinking become really big things. He has eaten some yogurt but doesn't seem too interested in food. He is on restricted fluids at the moment because they are trying to get fluid to drain out of the area around his lungs. The sooner that happens the sooner the two remaining chest tubes come out. However, they also don't want him getting dehydrated so we are walking a fine line. At first he couldn't get enough to drink, but now he has tapered off a bit. So, they are thinking that they may have to give him some fluids by IV if his drinking doesn't pick up. While they would like him to eat and drink more, it is no surprise that he isn't eating a ton. It has only been a little more than two days since his surgery and a little more than one day since he had morphine and a sedative. Oh yea, he has tubes sticking out of his chest. Thaddeus has had a lot of meds and tubes and wires removed. He is down to monitors, chest tubes, a catheter and some pain meds. They have started him on oral aspirin and cumadin to thin his blood. He is still on O2. Well, the O2 is blowing, sometimes in his nose, sometimes near his nose. His O2 numbers have been very good for him. They won't even think about removing the O2 until the rest of the chest tubes (plurals) are taken out. So for now, we are just waiting, trying to keep him as comfortable as possible as he tries to heal.