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!
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