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.

Update 57

Hey everybody. It has been a fairly slow day. Earlier today they took out the LA line. This is a wire that goes into the left atrium of his heart to measure what pressures the heart is experiencing. At this time they also changed the bandages that were on the chest tubes. They did this because he had quite a bit of bleeding over night. We were told that the bleeding amount was significant, but not surprising and did not need surgical intervention. They also cleared a blood clot out of one of the chest tubes. At that point they took him off of the sedative to see how he would do. One of the issues with heart surgery is that fluid tends to collect around the lungs. This is not a good thing. This is why they have chest tubes. These tubes go though the skin and into his chest near his heart and lungs. They allow fluid to drain out of the chest. This is also the reason he is on diuretic.  Unfortunately, it is also one of the reasons he is on a fluid restrictive diet. In other words, he can't have much to drink. At first all he was allowed to do was suck water off of a sponge. After a while they let him have a few ml of water in a cup. He is not at all pleased about this. He is very thirsty and even pre surgery loved to drink from his cup. They also had an arterial line in his left hand so that he could not suck his thumb. He was very much not please about this. He was getting so agitated that they were considering putting him back on sedatives. He did manage to fall asleep with some pain meds. When he woke up, they were able to remove the arterial line from his left arm. This was a major improvement as now he can use that arm and even suck the thumb! He is very pleased about this. He even took some time to pass his toy car from one hand to the other and back again just because he could. He is now resting peacefully. He is still on oxygen and a plethora of drugs. Our next major goal is to get the chest tubes out. That should happen in the next few days. They watch the out put and also do chest x-rays to look for fluid build up. Once the tubes are out, then we will work on getting rid of the oxygen. It is possible he will go home on oxygen, but it is possible we will not. His O2 levels are good right now, but since he is on O2, it is hard to say how much that means. 

OOOHHH! We get to try food! Yogurt time! There is a possibility it may come back up on us, but let's hope not!

Thaddeus Update 56

Surgery is done. The echo looks great, function is good, and they took out the breathing tube already. They will watch for bleeding overnight and of course infection. The surgeon assured us that everything went according to plan. We just got to see him. He is pretty out of it, but he certainly reacted when he heard Dede's voice. He will be semi-sedated for the night and possibly tomorrow to help keep him calm and comfortable. We won't be allowed in the room for another hour or more, so we are going to get some dinner while we wait. God is good!

Thaddeus Update 55

The latest update tells us that he MAY be done as early as 5:00. Of course that means he may not, but it sounds like things are going well.

By the way if you want to see some videos that explain the three surgeries that he has had, I found some very good ones. The main difference though is that Thaddeus's right side is under-formed. The videos show the more common hypo-plastic left heart. 

Check out the Children's Hospital of Philadelphia web site http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html



The nurse JUST came in to update us. The repair is done. Now they will warm him up slowly and take him off of the heart lung machine. We have no way of knowing how the body is functioning with the surgery until after he is off of the heart and lung machine. They will assess him and they will also do another echo cardiogram to see how things are working. So as of now, things are progressing the way they expected them to. 

Thaddeus Update 54

The last update was misnumbered. Sorry! Also the study was about kidney damage not liver. Apparently any heart surgery involves a risk of kidney damage. Most of the time it is very minor and temporary. The research is designed to see if some kids are in a higher risk zone or not. So there is no real danger to Thaddeus, but the more data they get the better. 

About noon the surgeon came in to talk to us. He said that he thinks Thaddeus is a good candidate for the surgery today. He seemed very chipper and confident. His emergency surgery was taken care of and he was raring to go on Thaddeus. We just had an update a bit after 2:00. They are through the chest, have Thaddeus on the heart and lung machine, have him cooled down (they lower the body temp during surgery) and are starting on the heart. It will be a few hours yet before we can see him. Apparently they had a relatively OK time getting in the various lines and IVs and such. 

Thaddeus Update 53

Today is the day! Surgery at 7:30! No wait, surgery at 8:00! No, wait, surgery at, well sometime. Our surgeon had an emergency surgery to perform at 5:50 this morning and we are still waiting for him to get done with that one so he can get ready for us. It is now almost 10:00 and we are waiting. Of course since most everything else that Thaddeus has had done was postponed at least once before it was done, this should come as no surprise. In the mean time I do have a few other things to let you know.

Last time I let you know that they had decided that the tonsils and adenoids didn't have to come out. However, they did decide to have a follow up with the Ear Nose and Throat doctor. He took a camera and took a look at Thaddeus's vocal folds just to make sure they were not causing any restriction or difficulty in breathing. They are not. However, the ENT doctor was surprised to see some movement in the previously paralyzed vocal fold! You may remember that at the last heart surgery they cut the nerve that controls that. The fact that there is some movement now means the never may be regrowing. As of now, the movement is not 100% but hopefully may continue to improve. So that was good news. Of course Dede did find out yesterday that there is a small chance that they could hit that nerve again this time around. However, she was assured that this is pretty unlikely. In fact it is more likely that they will hit nerves that allow him to control the diaphragm. If this happens he will have trouble breathing but Dede was told that this is not "life threatening." Not sure how having trouble breathing while your O2 levels are already low is not a big deal, but we haven't been able to ask about that yet. Dede also agreed to allow the hospital to do a research study. They do a lot of those at CHW. The study is to track if there is any kidney damage during the surgery. This was also a new one for us. We had not previously heard that there was any danger to the liver during the procedure.

Oh! They just came and took him to prep him for surgery. Apparently the longest part of this surgery is cutting through the scar tissue and the sternum and making sure not to hit the heart. Each time they go in it is more difficult due to the scaring. Also his sternum is hard now, unlike the first time around. They are going to knock him out now and then spend the bulk of the time getting in, after that it is apparently fairly quick. I've got move rooms now so I will send more later.