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

The current and the upcoming (Part 1)

By Jay

My Lord… the issue with not blogging for a week is that I don't know where to start telling you what I need to tell you.

Let me start by saying that Austin has been doing really well for the most part. He hasn't had such a good day today, although it started out great. He has been taking major steps towards getting some of his strength back. He's been sitting up a lot better, and that alone helps with so many things. He has also been scooting around when giving the chance, and it seems like physically, he has accelerated more over the last week than for months before, it seems. Today was the first day in a while where he had some concrete heart issues. It started out with palpitations, which he can describe rather well by now, over dizziness, shortness of breath, and so on. But that was only for this afternoon, and he hasn't needed any medications to "fix" it yet. It just hasn't been a great day. Otherwise, he has been feeling great, doing great in therapy, and being much happier than he has been.

We had a great weekend at home. Lee had promised Cameron to take her to see the new Chipmunks movie, and he spontaneously decided to take Austin and Amy along. They had an amazing time there, from what I heard. I didn't get to go, because I wasn't feeling well, but it was great just to hear the stories when they got back! I was nervous about Austin going into "public" like that, but all my concerns were for nothing. I heard he got the giggles over the chipmunks, and he had quite a few comments to offer. ;-)

The guys had a football afternoon at our house on Sunday, and they said they were "warming up for superbowl Sunday." When was this planned at our house??? Well, it was. And it's going to happen! God be with me ;-)

Alright, dear readers, I thought I could write a blog post, but I'm not feeling well at all. My back is hurting, and I'm feeling dizzy for some reason, so for the remainder of this post, I will paste some Facebook status updates of the past few days in here, just so you know of some of the things that came up. I will get to other details when I can. I'm sorry…

 

Jan 19^th:

I had my first PT session for my back this morning. I left Austin with Amy and explained to him where I was going. Fortunately, he knows very well what that means. He said "Bye, see you later" when I left. I'm so stoked he reacted like that! When I came back, we exchanged PT stories. :-) This reminds me of "normal" life! – Jay

 

Jan 19^th:

Jordan is here, spending time with Austin. He is letting him listen to some "new" music, and Austin is into it 100% (likes it a LOT!, keeps saying "turn it up!"). Jordan says they're rockin, and Austin confirms "yea, rockin." (practicing the rocknroll hand sign, Jordan appears to be a good teacher). They are too funny! I'm so thankful for his friends who still come see him regularly and make him smile like this! :) - J.

Comment: Just as I posted this, Austin's friend D. comes in. I quote: "Oh, I see I'm coming at the right time. Let's get this party started." Oh my, I think I might go take my old self to the family room with my book and leave these boys alone for a while ;-) - J.

 

Jan 20^th:

Dr. B. to Austin: Austin, would you like to outside to talk with me today?

Austin: Ya, I *think* I wanna go to the beach. Can you take me and Mom? You think, ya?

Dr. B.: I think we probably won't do that today, but maybe you guys can go when you go home this weekend? You'll be a lot closer to the beach. How about that?

Austin: Yea, Mom, you think? DO you think?

(Thank you, son...)

Me: yes, I think we could talk to Lee and Amy and if the weather hold up, we could probably do that.

Austin: that's good think!

( I think he might have a new favorite word) ;-)

 

Jan 20^th:

I listened to Jesus Culture's "Revelation song" this morning while getting ready, and just now (after coming back from PT) I caught Austin going "holy holy holy"... it wasn't loud, but he was singing it! In tune, mind you! I turned around and looked at him, and he stopped. I asked if he was singing, and he said "uhm I don't know." Yes he was... he tried ;-) - J.

 

Jan 23^rd:

Doctors in Boston are scientists. They experiment. They are thinking of possible "experimental" options for Austin's heart. Drugs are one thing, surgery is another... I'm overwhelmed. Explanation coming up sometime soon. I can't even fathom it yet... - J. (>> I WILL give you more details on this soon!)

Energy!

By Jay

I can finally sit here and type this by myself again. My back doesn't allow me to sit in one position for very long amounts of time yet, but things have changed. After the MOST painful back adjustment I've ever had, it started getting better. I can feel the slipped disc in my back, and it doesn't feel great. There is nothing that can be done, except for surgery, and I am still trying to avoid that. But just the adjustment of the vertebra made a world of a difference. It has been getting better each day, I am not taking pain killers anymore, and I can move a lot better. I'm really giving God all the credit for this, because this could have ended really badly. I know I will eventually need that surgery, but not now. Now I need to take care of my son (even if I'm still not allowed to lift, and probably will always need a lot of help.) Now I'm doing physical therapy twice a week. Miraculously, something opened for this week, and I will have my first appointment this Thursday. From now on, every Tuesday and Thursday, when Austin is doing PT, I will be doing PT as well. The only difference is that my PT will be at a different place. I found a place right here in town that I will be able to go to. I think God really had his hands in this… I will have to take care of myself and do WHAT OLD LADIES DO…. Right, Lee? I might be in back pain, but I can still read… ;-)

Just the fact that I'm not in as much pain anymore gives me so much more energy and motivation again. You don't appreciate your body and what it feels like NOT to be in pain until you go through a time with severe pain. When then finally stops, (or gets better), you learn not to take your health for granted at all. It makes me really happy to be able to move and not feel like I'm going to die. Ironically, I think Austin is going through the same phenomenon. He has been THE most active. I don't even know where all his energy comes from, but yesterday at PT, he started scooting around on the mat there. Noone asked him to do that. He turned himself around from his back to his front, pushed himself up onto his elbows, and he started scooting forward. He didn't make it too far before he was out of breath and had to stop, but he tried it again today. He made it even further. When we asked him what that was about, he said "I wanna move!" and today he said "I wanna go!" Most apparently he's got the urge to move around. Alrighty then!

Amazingly, his heart is keeping up with it quite well. With as much effort as he put into the scooting, I was a tad bit concerned. Today he pushed it hard enough to where he gave himself a bit of tachycardia (really fast heart beat). I didn't see this ending well. He stopped, took a break, and then picked it up again. And his heart sustained him! I just don't know where all this energy comes from suddenly! But I'm definitely not complaining. This is about the best thing that can happen to him right now. The exercise is excellent for his heart. Even if he were to have a little "fallout" while he's doing it (his heart is definitely not used to it, so it would not be surprising if he had the occasional issue), it will still benefit him. The crazy thing is that by scooting like that, he is skipping about 50 steps. He is not even strong enough to completely sit up for more than about 5 minutes, but yet he is pushing himself to crawl like that. This is hard work! He's working like a dog too, and after PT, he fell asleep and was so drowsy for the rest of the day that he could barely do any other therapy, just out of sheer exhaustion. He has had several long naps today, and I really hope that he will be able to sleep tonight, because he is awake now (at 9.30, whereas he often falls asleep around 8) and playing with his IPad ;-) However, this is awesome. PT right now is about THE most important thing for him. And if he's got the urge to move, we will do nothing but support him! I still wonder where this is coming from suddenly… but I am very happy with it. If he keeps up this rate of energy, he will get A LOT better in practically no time! (I'm not trying to set my heart on it, but I'm trying to be hopeful at the same time.)

His vitals have been looking really good over the last couple of days. That might be the reason right there why he is so motivated and energetic. That also affects his breathing and everything else in a positive way. He's been less congested, and therefore his O2 sats have been looking much friendlier too. The exercise will help him increase that even more. This is a positive cycle for once! It sort of started last weekend. Although I was not feeling well and he was overly concerned about it, he had a great time with Camy on Sunday. They took him out to the park and said he really tried to get involved and played with Cameron a bunch. She has always been a motivator for him, and maybe that day was a deciding factor in this. According to his circumstance, he is really doing well. Maybe he has understood that the more physically fit he gets, the better it will be for his heart. Who knows, but I love watching him go! I really pray it will stay this way!

I THANK GOD for giving us some better days. We all needed them badly!

And it must be contagious

By Lee

Welllllll you know how it is with the old people… we all have our little boo boo's here and there…. And sometimes we get them all at the same time. That's just how it is with old people. By the way, this is an early weekend-post, and I wouldn't be surprised if there wasn't another one for the weekend. Just a heads up. I am however surprised that I can sit here and type. What's going on, you may ask? Well, ya know, it is what it is with old people… lol

I would start with ME, but I won't, cause that's not that significant. Let's start with the oldest of the old people. Mrs. Jay. I hope she gets my humor in this, because I can already hear her sermon about calling her "old" on the blog… (Silent giggles.) Alright, the situation is nothing to giggle about actually. I'm just trying to make it sound not AS depressing… is it working? Mrs. Jay had her back adjusted today by this chiropractor that the neuro surgeon sent her to. Apparently that was one of the most painful things to her since she had babies, as she put it. Not cool. They put her on tons of pain meds to help her out, the pain meds knocked her out, she's been sleeping most of the day and was actually admitted to that clinic/hospital she went to, just for the night, just because she's on so many heavy pain killers. On the positive side of things, it looks like they managed to put her vertebras back in place, at least enough to where it should reduce her pain level, once the soreness of all this goes away. They are basically saying that here soon she should feel a lot better. The slipped disc is still where it is, and there is not much they can do to actually fix that. They just said that she can probably help herself a lot with physical therapy etc, and surgery can be put off. There is hoping.

I saw her early this evening, and she looked pretty rough but said that she was already feeling quite a bit better, but admitted that she wasn't sure if her back is starting to be in less pain or if the pain killers that she's getting are just "really really good." Mrs. Jay on dope is quite a bit of fun, I noticed. (I will get a slapping for that one as well as soon as she can move again.) Bottom line, what they had planned on doing seems to have been successful, now we just have to wait a little bit to see the effects, and to see if it has the desired outcome. For now she's just hurting, and that's it. She just wants to and needs to sleep. Her friend Cassie was staying with her for the most part and she will also make sure she'll get Jay back to Austin (>> their second home) by tomorrow.

Needless to say, we're not taking them to their *first* home this weekend. Jay needs to recover, and I don't think she's up for a 30 minute drive. I'm not sure if Austin is either. He had some bad issues last night with his vitals. They were extremely low again, and he needed a bunch of medications. That kinda went away again, as we are used to this up and down rollercoaster by now, but he slept like a twisted noodle and woke up in pain too. And guess what, his back is hurting too. At least more than normal. On top of that, he's still coughing (I know, I sound like a broken record, but this congestion is just NOT going anywhere, and what can I say…) so he says his chest is sore and so on. He's weak and sleepy, and a rather unhappy camper with his Momma being sick, him being sick, and everyone wanting him to get better and try crazy things like therapy… He doesn't usually mind that, but if he's not feeling well, he's everything but enthused about going all over the place and having to do what people ask him to do. He wants to stay in bed and be grumpy, or else wants Amy to spoil him and give him back rubs or something. He's not that grumpy then.

I think he's about ready to have a "normal" day for once where his Mom is feeling fine and HE is feeling fine, and everything goes over smoothly with no issues or exceptional situations. HA, and me too! Cause speaking of back rubs, you move that up a few inches towards the neck area and turn it into something I need really badly too. I've been having a headache again for almost a week now, on and off, but today I went back to the doctor. He wanted to do a few more tests, but all I wanted was some medication that will help me get through this phase. I'm not looking to get hooked on pain meds by any means, I'm just looking to get rid of this headache and function like I need to. The doc thinks that something the equivalent of Tylenol 500 should be enough, unless we do further testing and find out why my head hurts. We've been there, done that. I can tell you why my head hurts. Oh don't get me started here… what I'm basically saying is that a lot of things at once have been hitting me and it tends to hurt my head. That's all.

I find it ironic that we're all having our aches and pains at the same time. We should open a field hospital and all pile up in there and call it the "pain wing." Leanne gave me an hour-long neck massage earlier, and she is really good at that, but it helped for about a minute. She claimed my neck was rock hard of tension. Maybe that's cause I walk around with a permanent cringe in my neck when my head hurts. There's no winning in this. The doc actually wound up giving me something else for the "migraine," as he decided to define it, but it's something that I don't wanna take either. It's seizure medication and supposed to help with migraines >> huh??!. Bah it's all pointless.

But this weekend, I tell you, it's all about relaxing and getting over all our pains (I don't have to work, there can be miracles!). It seems to be contagious or something. I told Amy to watch out, there seems to be a bug going around…. She might wind up with a hand cramp or something if she stays around us anymore. ;-) I think we need a little bit of all-round prayer for that pain-bug to go away.

My plan is to take Austin out for a while this weekend, beach or something cool, but that's given that my head will let me walk around and that he is stable and not in so much pain either. If I fall out, there are others who could take him, but most of them are kinda scared with him as instable has he has been (i.e. last night). Amy is gonna be off tomorrow, so we're gonna handle him. IF any of that works, it could be a decent weekend. IF Jay's back will finally feel better, it will be even better.

Yea yea, this is how it is with the old people. The very old have back problems, the not so very old have issues with back, chest, oh and heart…. Oh the heart issues… and the little bit older folks have headaches and are about to get themselves another neck massages while watching the Whoso's Friday night online while they were supposed to be there (being they are a few minutes from here.) But the pain bug happened… Hope they don't get it. Gee whiz… it must be contagious!

Worries…

By Jay

I just asked Amy if she would like to blog, and she said "nooooooooooo, but I'll type it for you." She makes me laugh…. So I'm letting her type this again so I don't have to sit in this chair for too long.

There is quite a bit of suspense in our lives right now. My back is really getting the best of me. I have some days in between that are better, but then there are some, like yesterday, that are unbearable. I woke up in the morning in such severe pain that I literally could not get up. Amy started getting Austin ready, since she has been staying with us to help me here, and she asked if I needed help, but I thought that if I just laid there for a while, it would be ok. But no, it wasn't. We wound up calling a doctor, because I was hurting so badly that I was in tears. The doctor gave me shots into my back, which hurt tremendously, but helped after a little while. Austin was in the room and watching it all, and of course he was very concerned. He's having a hard time handling me being in pain.

It goes beyond me being in pain. As Dr. B. described, I am his foundation where he gets his security. I'm always there for him, I'm always strong for him (not really, but I try.) He can always "lean" on me. I take care of him with everything. Now suddenly I can't do that. I can barely help him with anything, and instead of being there for him, I can barely handle myself and need doctors to take care of me. For Austin, that is a big deal! It takes away all his security that he has, and it shows. Amy took him to therapy yesterday, and he kept asking her if "Mom is ok?" Amy couldn't even really say anything one way or another, because obviously I'm NOT ok. I stayed in the room and tried to slowly get moving, while he was doing all his therapy. He was very quiet all day, in fact, Amy said you could call it apathetic, and he was very listless and barely participated in anything.

It was very different just the day before. He was enthused about everything and tried very hard to do what was expected of him. And then yesterday was the complete opposite. He barely even wanted to talk to Dr. B. She asked him if he was worried about Mom, and he quietly nodded his head. I wish it was different, and I hate doing this to him. Of course I'm not "doing" it per se, I wish it wasn't there. I just hate not being able to give him the security that he needs. I really hope and pray that it's gonna change soon.

I went to see a neuro-surgeon about this today. He reviewed all my Xrays and MRI scans and examined my back again, and he said we could wait with surgery. That's the good news. There is a little bit of hope that a chiropractor can do a little bit of work adjusting the vertebra, and the slipped disc can somewhat stay in place. Sooner or later I will need surgery, there is practically no doubt about that. However, I am supposed to see this chiropractor specialist on Friday. He works with the neuro-surgeon, and he is supposed to be able to adjust my back. But here's the bad news. First off, I was already forewarned that adjusting my back will be extremely painful for me, but if successful, it should be a lot better afterwards. But what really concerns me is that I was also warned that if they are too stiff to adjust or get "caught" on each other, I will practically instantly need surgery. In the event that I do need surgery, I will have to stay flat on my back for quite a while, I'm talking weeks. If I wind up NOT needing surgery, I will still have to be extremely cautious of what I do, won't be allowed to do any heavy lifting or straining, will have to do physical therapy twice a week, and will probably get a series of shots for my back. None of this sounds pleasant, but obviously the current situation is not pleasant either and can't stay that way. I'm very insecure about how this is going to go and what would be the best option. If I try without surgery, nothing changes, and I will eventually need it anyway, then I'm wasting time. But if I do have surgery now, I will be out for so long, and then I will also lose much of my flexibility in my back. It's a mess.

Needless to say, it's been quite emotionally straining for me too. Being in pain is not a piece of cake. I do understand Austin so much better now, and I feel horrible for all the back pain he is having. In fact, he has been having more back pain too, since he can't move like he should. His back is getting worse too, and that doesn't add to the general well-being. I think the worst part for me though (besides the actual pain) is that I feel rather useless, and that I see these drastic effects on Austin… I wish it was something that didn't affect me this badly. Thankfully, we've had Amy here who has been helping us with everything, and literally helps me put my pants on, because I can barely bend over forward.

Other than that, Austin has been fighting with this bad congestion that he's had again since Monday. However, his doctors said that if it was caused by something still stuck in his lungs, he would most likely have pneumonia by now. Not a good thought, but comforting to know that it's not that but just our same old demise (not like that's any better…) He has just been acting so strange, and I know it's because of me. He is still so "emotionally instable" and this is not helping at all. I'm worried about what happens if I don't recover quickly from this and the effects it might have on him. My back is being counter-productive to HIS well-being, how ironic…

I'm scared as heck of Friday, I mean, who is looking forward to being put through a bunch of pain? But I'm going to do this in hopes to get better. That's the second thing I'm worried about. Please PLEASE pray that it is all gonna go well and this doctor can help me and not make things worse! Please also pray for my nerves, because the nervousness about it all is getting to me. Please also pray for strength for Austin to handle this alright, for him not to feel so insecure now, and for his issues to go away too.

On top of everything, Lee has been fighting with bad headaches again, most likely caused by all the stress he is going through with his company right now. It has gotten really bad for him, so prayers on that are also appreciated. I feel like we're all falling apart, because as much as we've been worried about Austin's health, now I'm starting to fall out too. We can't afford that if we want Austin to get better… I have to be there for him. And I have to get healthy again, ASAP!