The Current and the Upcoming (Part 2) – Typing at the hospital

By Jay

Note: I started writing this yesterday. I am finally finishing up tonight. We're home now, and it's a quiet evening.

Original post:

As I'm sitting here at the hospital and we're just waiting, I might as well use my time wisely and start typing up a post. Yes, you've read correctly – the hospital. No panic, it's nothing drastic. I will get to that in a moment, but I am also planning on telling you about the conference with the doctors in Boston and a few other news. So, bare with me, I don't know how long I'll be able to keep up this typing, but I'm determined not to post this until it is complete.

To start off, let me explain why we're here. Austin was doing PT and I was about getting ready to go to my own PT session. I was about to say goodbye to him, and he was on the floor, lifting himself up and doing some exercises with his therapist Mark. I can't even really tell you how it happened, but all I know is that his arm slipped off somehow when he was pushing up, he cringed, but seemed to be ok. We didn't even check the PICC line because it did NOT look like that area was even affected. We talked for a moment, and right as Mark wanted to help Austin turn over to get to another exercise, he noticed blood on his shirt. Well, it went down from there.

We had a doctor look at it, but since it didn't stop bleeding, he suggested going straight to the hospital where they had specialists and a cath lab and everything else… It wasn't bleeding terribly much, but just a tad too much for comfort. When we got to the hospital, they tried adjusting the line in his arm. He didn't care for that, and it didn't help to stop the bleeding. Another doc came and looked it and suggested it needed to come out. Austin was rather calm until that point, because we had all acted like everything was fine in front of him. I think I was more nervous than him at first, but when they started messing with it and then mentioning "pulling" it, it wasn't good. They had him all covered in sterile sheets already and that made him uncomfortable, but something about the situation didn't settle right. He didn't want it "pulled." He told them not to hurt him, and they said it would only hurt just a little bit and they would be careful, but it was a bit too late. We tried to correct the unwise use of language by telling him that it's coming out and it would be better afterwards, but the damage was about done. Once he got nervous, he got nervous. There was no stopping it. The nurses there tried to take care of it, but he had a pretty bad panic attack and nothing else worked out anymore. It took a good while for him to calm down after that, still with a bleeding PICC line, mind you.

Anyhow, Dr. T. eventually came in, and it wound up to where he personally had to pull the line, because Austin wouldn't let anyone else touch him. Yes, it's difficult sometimes, but it is what it is. He has gotten A LOT better about it, but once he's nervous, it's tough. Dr. T. also mentioned at that occasion that he had planned to schedule an ECHO soon and suggested that we do that today, being that he needed to have a look at the artery in Austin's arm, just to be on the safe side. I thought we might as well get that out of the way, and so we have to wait.

By now (a few hours later), everything is done. The artery is fine, THANK GOD, and we don't have results on the ECHO yet. Right now, we have to wait for our release papers and for one last look at his arm. It was hurting earlier when we were waiting for the ECHO, and his arm is turning purple. I still wonder what happened… we were right there and didn't notice anything crazy…. I had brought Austin's IPad and that was an absolute life saver today! In between, he got busy with it and it distracted him from being in the hospital, from being in a bit of pain, and it kept him calm. He randomly fell asleep in between, and I have to say that overall he handled pretty well. The one thing, yes, but afterwards he was doing fine, and during the ECHO, he was SO much calmer than the last time he had one.

In any case, Dr. T. decided that for now we would go without the line. We'll just have to try. The last thing he wanted to do now was to send Austin back into the cath lab to put in another line. We don't use it THAT often. It's good to have, often enough, but we'll just have to deal now. I'm praying it'll be alright and not cause any issues. For those cases that he does need his meds, he will need larger IV's, that's the basic gist of it. It's not nearly as good as having a port to his heart, but --------- it is how it is now. After all, it's not too horrible to have that thing gone… if you wanna look at it from a positive point of view. Phew, trying to be hopeful and not let it worry me.

 

There is enough to worry about as it is. Really, it's all going pretty well, besides those situations like today. We didn't need to go about this route… but we did. Besides that though, Austin continues to do alright. It's all in relative terms, but my definition of it is that he is improving compared to only a few weeks ago. Every step in a positive direction is much appreciated, even if we are not nearly where we would like to be, and his heart issues are not leaving him alone yet.

That is exactly what Dr. T. had addressed the other day. He brought up the fact that Austin's condition is still rather serious, and although we're seeing good progress, everything is shaky and can go back to zero in a heartbeat. I mean that in a very literal way. He is fine, but instable. Most likely, that will never change again. I don't like using words like "never," because Austin has proven us wrong too many times. Realistically speaking though, his heart can only hold this up for so long. I saw a paper a few days ago that was part of Austin's medical file. It said something about "terminal stage" on there. I asked Dr. T. about that, because I wasn't aware of the fact we're speaking in those terms. I know we WERE not too long ago, but Austin got better instead of worse. I didn't understand. Dr. T. explained that in this case and circumstance, some technicalities are calling for a description of stage, and they it says "terminal" if 1) the condition is severe, like Austin's, and 2) the patient has a life expectancy of less than a year. I just about fell out of my chair when he said that. I was quite appalled by that. He said that they have to put "something," and with most patients who are in Austin's condition, yes, they will not live more than a year, with the advanced heart failure and overall condition of his heart and body. At the same time, he said that Austin falls out of every category in the book, so it is hard to tell with him anyhow. BUT they have to put something on paper, and that was the only "category" that describes his condition accurately. Needless to say, that was hard to stomach for me and still is. I was ignorant enough to think we were past that. I'm tired of hearing the word "terminal" in combination with my son.

 

And here is how the conference with Boston comes into play.

Dr. T. has been constantly conferencing with the cardiologists in Boston. He has permission from me to forward his medical files to them. They are still the ones providing Austin's heart medications that have been keeping him alive. However, we all know that they are not working as well as they should be anymore, or Austin's heart has just gotten weaker. They also provided the PICC treatments that Austin recently received (that I'm starting to believe helped a little bit after all.) They are all just solutions to decelerate the process of his heart giving in.

I can give you the long version now or the short one, and I have decided to go with the short one. (It will still be long, but less complicated.) As you probably know, the cause of all evils with Austin's heart is a condition named "hypertrophic cardiomyopathy," or HCM. He does NOT have an "ordinary" form of HCM. It is considered HCM because a lot of the symptoms are similar to identical, but Austin's is a special case. His left ventricle (the heard chamber) is the most affected, but by now, his entire heart is. HCM is a condition where the heart muscle is thickened and therefore decreases the pumping capability of the chambers, but in Austin's case, it is not really the muscle itself. It's an entire part of the heart that is thicker than it should be, and it's disabling many of the functions. The heart "tissue" in that area is scarred and stiff. I can't even really explain that in simple terms. It is basically as if his heart is having a constant muscle spasm. When muscles are sore, they don't support body parts as well. Compare it to that. But in Austin's heart, it's not just the muscle itself. His left ventricle basically "overworked" itself for his entire life until he got sick because it gave in. It is the least functioning part of his heart, but one of the most important ones.

In any case, when we conference with the doctors in Boston, (me, Dr. T., Dr. M., and Amy), they talked about an experimental method of surgery to fix some of these problems with HCM. There are types of surgeries that are well-tested and work for some HCM patients, but it wouldn't work for Austin because he's got such a strange form of it. What the doctors were basically saying is that they have pondered his case for a while, and a team of doctors think that they could *try* doing surgery to reverse some of the effects of the heart failure by reconstructing some of his heart tissue with a sort of artificial tissue that can bond with his. Scary, isn't it??? I think so.

Yes, trust me, this is the short version. If I told you the long one, your brains would already be smoking. It took me about 2 hours to truly understand what these doctors' plan is. Wait, let me re-word that. It's a "proposal," not a plan yet.

 

In a really good case, there is a chance that they could improve Austin's heart function by about 20% (which is quite great, considering that his heart is functioning at about 70% of where a healthy heart would be, and that's at "good" times.) He could possibly live without his heart drugs (and switch to some that are a lot easier and cheaper too.) I wouldn't have to worry about affording his super expensive drugs anymore, but much more importantly, it could improve his quality of life by miles! In theory, that would also substantially extend his life expectancy. He will always have a pace maker, but he could be living almost up to par of a healthy heart without all the trouble.

In the worst case, he wouldn't make it through surgery and die. To say it quite frankly. Of course I am aware of the fact that the risk for that is immense, being that Austin's weak heart doesn't care for surgery very much these days.

A few other negative factors are random things. We would have to go to Boston. We would probably be in Boston for quite a while. They would have to take Austin completely off the heart drugs for an entire week before surgery. It could be done laparoscopically, but the risk of it not working and having to open it up is pretty high. So basically, we can assume that it would wind up being open heart surgery. Things could go wrong during surgery that could cause other complications. He could have complications after surgery. The list doesn't end. We know his history. It doesn't appear like a "sane" thing to do. Besides all the actual risks of it, I am having an emotional issue with putting him through all this again. Granted, if it all worked out, it would be a matter of weeks, and his life could be so much better. But it leaves a bitter taste, because we all know it would be everything but easy for him. This would be his 6^th heart surgery since 2007, and probably the most extensive one. The thought alone almost makes me want to throw up.

On the other hand, this could potentially make life so much better for Austin and eliminate so many problems. Another awesome factor is that being that this is a "straight scientific experiment," (yes, that's exactly what it is), we don't have to pay for it. I would basically sign my son over to science, and it's considered research. That's an awfully nice way to put it, while I could think of so many negative ways what to call it. I have to correct myself, it's not a positive thing, just the fact I don't have to pay for it. Of course being that it would be an experiment, there is no real telling if it could be successful. It is just a theory. Should I trust the scientists and their "educated guess?" I could tell you the prior testing procedures on this, but I really won't… I don't wanna think about it. Because there are little to none. Only in hypothetical scenarios and the logical conclusions of such.

Well, they could practically cure my son. Or they could kill him. That's quite a decision. I'm shocked they even came up with this idea. One thing is for sure: It will require a LOT of prayers on my behalf and a lot of guidance on what to do. I am drawn 50/50, I have no idea whatsoever what I will wind up deciding.

Please respect the fact that I am not asking anyone for opinions. To put it bluntly, I would prefer NOT to hear other people's opinion on it. I am asking the people whom I want to ask. Please refrain from commenting with "advice" on this matter. I know that it is all meant well, but please let me make my own decision without outside influence. This is going to be an extremely tough decision for me. I don't have to decide today, and not tomorrow either. I have all the time in the world. At least I have time while Austin is breathing next to me. I'm not trying to put this off, of course, because every day for Austin is a race against time, BUT it's a decision that needs to be thoroughly pondered and cannot be made in the blink of an eye.

I am asking God what I need to do. I cannot make this decision by myself, and no human being will be able to help me. It will take a little bit of time and many many prayers. If you would like to contribute to the decision, please just pray that God will make it obvious to me what I should do. That is the best thing anyone can do for me right now. I am VERY torn, the thought of getting rid of most of the heart problems has me ecstatic, but the thought of risking it all and losing the battle makes me want to forget this ever came up. I will not and cannot act against God's will on this. I have to find out what God's will is first. This could be our chance. Or our demise….

 

To round this up (it is about 24 hours later now), there are a few other things I want to share with you.

First: My back is holding up. I still have MANY issues, but I can live with them for now. No pain killers needed. I just feel like I just aged 20 years… we have been doing great with all the help we're getting from our friends. They truly are lifesavers!

Second: We're going to try to come up with more things to do for Austin, The movie theater last week opened our eyes a little bit (or mine). As long as he is having a decent day, we are going to start doing more things that we would do/HE would do if he was healthy. He is not having such issues with public places or crowds anymore, and we will take it one step at a time, as long as he handles it, and start taking him out more. We have to keep it at a responsible level, but he needs to see more things. He is learning quickly and picking up on a LOT, but also, he is so sick as it is. He has seen so many days in hospitals and clinics. He needs to LIVE while he can. We couldn't do it for so long, because he was so leery with strangers or strange situations. We're getting over that. And we will take advantage of it.

Third: We're gonna have a wedding to go to soon! Lee and Leanne are planning on getting married in May. The plans are fully in the making. And guess who will be the BEST MAN? ;-)

Fourth: Lee and I have been talking about a more regular schedule for blog posts. Everything has been a little messy lately, and that affects our ability to blog. We've been trying so hard to post about twice a week, but are thinking about going to once a week for now. Of course we will continue posting on facebook, even though we are cutting down on that as well. It's enough if your news feed is being cluttered by our posts in times of trouble ;-)

Fifth: We have a "new" admin-member. His name is Mitch, and he is helping out our other two admins, who are extremely busy at the time. Angel is practically taking a break from Admin duties all together, at least for this ongoing semester ("due to acute overtasked-ness," as she put it). She is working as a web designer now and still going to school, so I can't say I blame her! Ben can't always be here and take care of things either. Mitch is one of Lee's friends, who knows Austin rather well too, and has helped before with little things here and there behind the scenes. Just don't be shocked if you send an Email to Admin, and a guy named Mitch responds. It is all legit ;-)

I won't make this post any longer. We might post this weekend, but I am not sure yet. For now, we will announce on Facebook if there is a post.

Enjoy your weekend everyone!

Jay