warning explicit pictures

I Just kidding.  There will no explicit pictures here.

So for the last few months I have become increasingly aware of certain things that are changing. I am not sure what to think about it but since I can't do anything about it I have decided to make a warning about it.
At the entrance to our driveway is a beware of dog sign. We have a small dog that really is more likely to be confused with a hamster than a dog. I mention it because I think it might be in everyone's best interest if I change the sign to " beware of naked man" instead.
After a month of hospitals and increased sightings of me in my birthday suit or my derriere hanging out of our shower chair we only want to warn you that you may see more of me than originally planned. I am fine with it and will always welcome you to our home.

After a little reflection I think I should add that inappropriate attire is only appropriate for me.

Yummy!

Jon has had his tracheostomy for a week now, and I think the verdict is in. It is AWESOME!! He can breathe with ease, which is giving him some energy again. He can speak with better air flow than before, so he sounds even better. And perhaps most importantly... HE CAN EAT WHATEVER HE WANTS! Woohoo!!!! Bring on the steak! (OK, so perhaps the breathing is most important. Whatever.) 

Jon went down to X-ray this afternoon so they could make sure he was swallowing safely. He had to eat different consistencies of food with barium (which was completely disgusting), so it is a really good thing he can eat what he wants now. If he had to do that and the reward was never eating again. Not cool. I got to administer the torture by feeding him, hence the awesome 101 Dalmatians lead vest I'm wearing.

Jon did have a very minor respiratory event last night, but it will likely mean staying in the ICU for an extra day. Hopefully he'll be home on Thursday.

In X-ray, getting ready for the barium swallow test.

A post I was hoping not to write for a while

Well it has been a doosey of a week. (Doosie? Doosy?) Last Thursday and Friday Jon was having a bit more trouble breathing than normal. He needed the big mask you see in this photo in order to feel comfortable, and even then it wasn't perfect.

Jon's last masked selfie! Taken this morning.

Normally he uses the nasal pillow you see in this photo. (My friend Debbie thinks this outfit makes his nose look big.) This hasn't been a bad deal. Not too intrusive and he could still talk and eat. 

Looking good in his fancy candy cane jammies.

Before his gallbladder (hear after referred to as that damn gallbladder) decided to go wonky in August, he looked like this. (Although slightly less dopey. This is a picture from the ER when he was getting his kidney stones taken care of.) So handsome!

Blissfully medicated while passing a kidney stone.

That damn gallbladder probably set Jon back at least 6 months. The progression of ALS is relatively constant...it does't really speed up or slow down. It is just relentless. However, when other trauma to the body happens, the ALS trajectory dives at the same time. Even though he is back to his previous progression, he just couldn't recover to where he was before that damn gallbladder went bad.

Which brings us to today. It turns out that Jon did indeed have pneumonia last week. He simply doesn't have the diaphragm strength to cough well and get gunk out of his lungs. So there it sat... in a nice, warm, moist (eeeewwww) environment just begging to get infected and become pneumonia. And even though they are clearing up the pneumonia, he still doesn't have the strength to clear his lungs.

So today Jon will be having a tracheostomy placed (a breathing tube in his throat for a ventilator). I'm not gonna lie... the last couple of days have been tough. Sunday I cried myself into a ridiculous headache. (Thank you, Becca, for the ibuprofen and chocolate...cleared it right up. As an aside, I find the best friendships are built on a solid foundation of chocolate.) 

But here we are. We knew this day was coming. Jon does have ALS, after all. And he made the decision months ago that a tracheostomy is the right choice for him (and I completely agree). We had hoped this wasn't going to happen for a long time, but we don't always get what we want. And that's OK.

While this is an emotional transition for us, I believe it will be a great physical change for Jon. He won't have to deal with all the stuff on his face, and we'll be able to suction the gunk out of his lungs. The downsides, of course, are that talking and eating will be difficult to impossible. But again, the ALS had already largely taken those things.

Our kids are thrilled. They're just excited for dad to look like Frankenstein. Just in time for Halloween!

More on Happiness

My sister-in-law, Julie shared this story with me about her son Danny. I just loved it and asked if I could share. 

So last night I was at Faith Formation with Danny and the speaker was talking about angels, really knowing God, and true joy and happiness.  Being happy all the time regardless of things (money, a nice home, nice car, fancy clothes, etc.).  Then she asked if anyone new of anybody who was "truly happy all the time".

Danny's hand was the first one up so of course she called on him.  His answer was:

"My Uncle Jon.  He is always happy and in a good mood.  He has ALS and he's really sick but he is still always happy and smiles!".

Then she asked him why he thinks he is so happy when he is so sick.  His answer was:

"Probably because he is always with his family and he goes to church all the time!".

WAY TO BE THE LIGHT JON!

What does a handshake say?

So a bit about me.  I have a weird thing about handshakes. I believe you can tell a lot about a person based on the type of handshake they have. I had the opportunity to work with lots of youth over the years. My goal in working with them was to make sure that they became positive members of society. Not my only goal but an important one. So as youth came into the program one of the most important things I did first was to shake their hands. I'll be honest here And say that I purposely crushed many a hand. Now I think I can say I have never physically hurt any of the kids. Well except for that one older boy who wanted to wrestle with me. I took him down in front of his parents (with their permission) and managed to hit his head on the lamp table. Totally an accident and I was a little worried because as a good friend said "one good crack to the head and you got yourself a mentally Challenged individual. ". So our friend actually said retard but Anne said that I can't say retard so here is me not saying retard. Well I did not hurt him that badly. He only had a small cut on his head. It was only a little blood. I mean he was totally fine. I didn't make him any worse than he already was. I think.  Anyway I always made a point to shake their hands a bit strong. Why you say. Because I believe that a handshake says a lot about who you are?And I want them to make a good impression.
So there are many kinds of handshakes.

 First is the dead fish shake. Basically it is when you grab a hand that is totally limp. No muscle tone. You squeeze their hand and there is nothing. Like holding a dead fish. Gross!!!I also put the shake only my fingertips shake as part of this. I might be wrong but giving only fingers for a handshake went out of style a long time ago. We are past kissing hands as a form of greeting? Right? So use your entire hand! When I get a handshake like this I think, "ewe, and now I have to wash my hands." It tells me that your not confident or you are bored and I am not interesting enough to you. I prefer to think that you are not a confident person rather than me not being interesting.

Okay handshake number 2 is the I'm trying but either I am shy and can't look you in the eyes or I'm embarrassed or no one has ever shown me how to properly shake a hand. It is just a bit better than the dead fish shake. At least you managed to put your entire hand into the shake. Now add more pressure and look me in the eyes.

Number 3 is the over the top shake. I have to say that I am guilty of crushing a hand or two in my life, but it was only ever done out of love. This is the shake that makes people not want to shake your hand because they don't want to visit the ER. Perhaps your over confident or its your best friend and that's how you treat your friends or in my case out of love for my fellow man, just remember not every one likes this. There is a time and place for this type of handshake. If I ever broke fingers or hands I apologize but I did it for your own good.

The last type of handshake is the right one. It happens when you look the person in the eyes, extend your hand, firmly grasp the other hand and give enough pressure to let them know you're there. Now remember don't make it a staring contest and for heavens  sake smile.

So why is this important to me? It's important because I think making a good impression is important. I had the privilege of teaching teenagers for the past 10 years. Truly some of my favorite memories. Whenever I greeted any of the youth I always gave a good handshake. I would grasp their hand, look them in the eyes and say hi, how are you, and I am happy to see you. If they ever gave a mediocre shake I might have on occasion squoze, (I know squoze is not a word but I really like it) their hands a bit hard. The reaction I got was always positive. Every time I saw them they always put their best effort into shaking hands. I like to think that from the one simple effort I could see confidence grow, create a beginning of a trusting relationship, and teach them a little bit about respectful behavior.
Some may say that I put too much into a simple handshake and read too much into it, but I like to think that the kids felt good about coming and actually  made a bit of a game out of trying to squeeze my hand till all feeling departs and my fingers are permanently fused together.

It's good that I have ALS because I really can't shake hands anymore. I now prefer to fist bump. When I can't do a fist bump I will move on to the head butt. If you don't like the head butt idea a good pat on my shoulder works or a kiss on the cheek. If by chance you miss my butt slaps or the occasional goose remember ( only sporting events got the slaps and never to minors) I can't actually  move my hands so you will have to help me.

positives for my hospital stay

So I spent the last week or so in the icu at HCMC. I didnt really expect to enjoy my stay, yet there were definate pluses to it.
1.Being naked- so while i did have a gown on i was totally going commando.  oh the joy of not being tied into clothes that don't fit or just being free  ...well you get the idea.  Just so you know Anne makes me wear clothes almost every day. But I think a little naked time is important for every one.  Just keep it private.
2. Catheter- Okay two big minuses. One for going in and one for coming out.  The positive is not having to get up and go to the bathroom. Not that I could actually get up.
3. Food- Let me say hospital food overall is tasteless and cold. However a big thumbs up to my dietician who put a vanilla shake for every meal. That and fresh strawberries with pudding really kept me going.
4.Pain meds- If the definition of an addict is someone who asks for pain meds when he just wants to sleep or when he doesn't want to be part of the conversation, then I am an addict. Big plus for pain meds especially the IV ones.

So I have to say thanks to all my friends and family.  I appreciate all the thoughts and prayers and also ensuring that my family was properly fed and watered.

Your reward is to not have to wipe my rear.  Unless you really want to. I have very little modesty left.  It's like being on a OB ward except I'm not giving birth.

Getting Worse Before Getting Better

I am so glad that I can report that Jon seems to be doing a little better this evening (Monday), after a bad night and morning. I'm afraid time is a haze. Did I let you know that the drain for his gallbladder worked beautifully? It immediately relieved his pain, and his white blood cell count is back to normal.

However, being in bed for days is doing a number on his respiratory system. He has had some crud in his lungs and he spent most of the day yesterday trying to cough and use suction to get it out. He was very uncomfortable and during most of this time he was using the BiPap (breathing) machine he uses at home. He didn't use the BiPap at all while he was up in his wheelchair for a few hours.

After I got back to the hospital last night (Sunday), Jon was still pretty uncomfortable and a bit distressed. Then at about 11:00 last night he had a significant event. His vitals crashed and he wasn't able to breathe. It was quite serious, but getting him on a hospital BiPap machine with a full face mask brought him around. 

He was quite uncomfortable all night and had a hard time getting used to that mask. This morning he tried using his own bipap machine again because it is much more comfortable. After not too long, he had another episode. This time all of the equipment was already in the room and he recovered quickly. 

The Drs really don't know why these episodes happened, but they are speculating that the crud in his lungs created a plug and prevented him from breathing. He has now been on the mask all day and is doing much better. His vital signs look better than they have looked in days, and he isn't coughing like he was before. I don't know if the crud is going away, or if he just isn't getting it up, but he really does seem a lot better this evening. They are still hearing decreased breathing activity on his right side.

The real concern is that if he can't get rid of the crud in his lungs on his own, eventually they will have to intubate him to help him breathe and suction his lungs. I've spoken to the attending pulmonologist as well as the pulmonologist from the ALS clinic and they agree that even if they intubate him, he may be able to come of the ventilator with a little time. Our fear, of course, is that due to the ALS, once he goes on a ventilator he won't be able to come off. I was relieved to hear that might not be the case.

We are still praying that his lungs will clear, and this afternoon and evening seem promising.

** Note from Tuesday morning... The Drs were just in and really do believe he is on the mend! Over the next few days they will wean Jon back to his home BiPap machine, and hopefully he will even wean back to just using the machine at night. Very good news!!

Seriously?!?!?

Jon officially has the WORST luck when it comes to health issues. As it turns out, when you have ALS other normal medical problems don't stop. (This is from the email update I sent to family, so it may be more detailed than you are interested in! I decided not to edit, so this was his status as of Friday morning)

For the past few months, Jon has had intermittent stomach aches. They have lasted 2-3 hours and then he's been fine. He had a kidney stone a few weeks ago, and we assumed that explained the pain. He's had 2 more bouts of the pain since then.

Wednesday night he started hurting again. The pain was manageable through the night, but did continue into the morning. We still went to his ALS appointment, and he got increasingly uncomfortable throughout the day. They decided that they needed an internist to look at him, as the pain was clearly not ALS related so they made an appointment for him in urgent care. 

Around 2:00 the pain got intense, just as he was heading to urgent care. They were a bit slow, so I asked if the ER could deal with his pain better (imagine a lot of moaning and writhing...totally not Jon), and they did transfer him. After taking much too long getting the IV in, I asked them to just give him a shot in the meantime. They did and then got IV pain meds going as well. They diagnosed relatively quickly that he has sludge/stones/infection in his gallbladder...normal gallbladder problems for those who have them.

The trick is managing the gallbladder with the ALS. At the moment they are managing the pain meds with the fact that they depress his already weak diaphragm. So managing his pain is making his O2 fall. For now they seem to have found a good balance, but if his saturation drops below 90% consistently, they are discussing intubating him. The concern, of course, is that he would never come off. I will encourage them to let him feel a little more pain before that happens.

Surgery is scheduled for 2:00, but they are putting in a tube to drain the gallbladder, rather than remove it. I'm glad the surgeons (who of course know Jon) are being cautious. An otherwise healthy adult could handle simple complications, but again, they don't want Jon to end up on a ventilator already. The drain may actually solve the problem, but it will definitely make the surgery to remove the gallbladder safer if it is necessary in a few weeks. That and the antibiotics he is on to manage the infection.

When Jon had his feeding tube placed, recovery was definitely a little difficult for him. I am anticipating Jon being at the hospital through the weekend. Since he has a BiPap machine for breathing while he's laying down, they have him in the ICU, which I'm so grateful for. I think he is probably getting more attention because of that.

To be continued...

Constant State of Temporary

Years ago Jon and I realized that we had a bad habit of living in a constant state of temporary. Of never really settling in where we were because we always knew we'd be doing something else in the future... Jon wasn't in his "forever job" ... we weren't living in our "forever house" ... all of the kids will be out of diapers soon (that's just an example. My kids are, indeed, all out of diapers) You can imagine the problems with this way of thinking. We didn't establish roots to feels settled. We didn't make our house the home that it could be. Perhaps most importantly, it led to a lack of personal progression.

At some point we identified the problem, named it (thanks Jeffrey) and made a concerted effort to change it. And we did change it. We started living in whatever circumstance we were in as though it was our forever circumstance - knowing that when and if things changed, we would embrace it. This little tweak in how we viewed the world was life changing.

Well, I think we are back in that place. Back in a constant state of temporary. Except it's different this time. For one, we know better. But also, our temporary situation is more clearly defined. Seriously. What are we doing? Waiting for Jon to die? This is insane.

So we've been talking. It's time to settle back in. Have you read Sheryl Sandberg's post on Option B? You should. No more constant state of temporary for us. Now it's time for Jon and I to kick the Sh%@ out of option B. Or as my friend Debbie is more comfortable saying... It is time for us to aggressively go after option B. So that's what we are going to do.

A Little Proud but Mostly Scared

 So as I get more and more unable to do the little things in life I am forced to rely on my kids more and more. Well the latest help has been in the form of driving. My oldest son is now 15 and has passed his drivers test and for the last few weeks has been on the road driving with Anne. So first let me say I am proud that he passed his test and is learning to drive. 

Now let me also say I am a bit scared as well. Not so much for me but for the rest of our state who has to share the road with him. Jacob is an amazingly intelligent kid who is oblivious to everything around him.  For example we have lived in Minnesota for 15 years and for the last 6 in a house that is less than 2 miles and three turns from church. He still needs directions to get to church. He is also the kid who I always knew when I asked him to mow the lawn that I would never get straight lines and there would always be these patches of grass that always seemed to be longer than the rest of the lawn. 

So with that said I actually feel confident that he is doing a good job. He is actually very cautious. Getting him to drive the speed limit is very difficult. He also tends to go to far to the right on the road because he's scared of the cars coming towards him in the other direction. And I am not yet confident in his parking skills. 

With all that going on I am very excited for him and his new found freedoms. I just think I should warn the people of Minnesota and north branch in particular that there is a new driver on the road and if you happen to be behind a car or van that is going a bit to slow and seems to be leaning right a bit, back up!!!!!  Or maybe go around him. Or pull over and wait 10 or 15 minutes for him to get to where he is going. Just keep him in your prayers or maybe I'll keep all of you in my prayers. That might be a better idea.