Monday, September 1, 2014

FAITH

The head counselor from Camp Simcha Special Boys posted this on his Facebook status:
Faith is knowing when to act and when to accept...learning to act on what you should not accept and learn to accept on what you should not act on.
This got me to think about a question so many ask in one way or another....how do you do it? For me/us, it is about taking care of our children. Oh trust me/us it is not how we imagined it to be. Being angry all the time is only going to hurt each other and the kids. We want to give our kids the best we can, making the best memories we can and treasuring each moment. This is our life, it may not be easy all the time...heck most of the time it is not easy, but its our life. It has taken both Brian and I a long time to accept that this is our life and the prognosis of Ian's disease...I never quite looked at it as faith.

Friday, August 29, 2014

AND TIME MOVES ON

Becca's first few days of middle school were great. She said it was good, fun and HOT. I guess that is what happens when you go from a school with AC to one that does not have it in the whole building. From what has come home from the teachers, it should be a good year. She has made a few new friends and seen some of her old ones from Chatsworth. We were proactive before school started and got in touch with the guidance counselor as well as I sent an email to her teachers so they would be aware of our family situation. We felt that it was important for them to know, especially when Ian ended up in the hospital 2 weeks before school started and we weren't sure when he would be home. I was afraid that he would still be in the hospital on the 1st day of school and how she would handle it. We are looking forward to FMS becoming a part of our village. 


Ian's appointment with pulmonary on Wednesday was OK. She made a few changes in his treatments, mainly his mid-day ones. This will hopefully help with some of plugs and thicker secretions he has been having. Another reason he could be getting the plugs and thicker secretions is due to his water intake, if you don't drink enough (or in his case drink enough and get enough extra in the G-tube) then you will be dry. His pulmologist is going to get in touch with his GI doctor to figure out how much water he should be getting. We have a few other options we can do if this does not work. After taking a listen to Ian, Dr. Sterni said that he sounded good but he was not moving much air on his own with out the vent. This was not really a surprise as we knew we would come to this point and my guess is last week did not help this much.

As Ian's appointment was on Wednesday and so was the 1st day of school, he had his 1st day of school on Thursday. He had a great 1st and 2nd day...seeing all of his friends he had not seen since the last day of school last year. Seeing his teacher...and all the other staff at school who he has seen for the past 6 years. It is hard to believe that at the end of this year, it will bring to an end 7 years of us being at Chatsworth. We are looking forward to another year there and Ian have a great 5th grade year. 

I was reading a blog of an acquaintance and some wonderful words of his....the challenge is to savor the moment, and at the very least - to pay attention - because time takes no prisoners, accepts no bribes and if given the chance will rob you of every last opportunity for awareness, if you don't take the time to step up and be present. I know, because it's always a work in progress for me. Sometimes it seems life gets in the way of living - if that makes sense - and the great challenge is to heed the call, and never forget the passage of time is calling to you to stop, look, listen and engage because while we don't think we are - or our kids are - I have photographic proof and most likely you do too - we are livin' in fast forward. And I'd love to rewind real slow....thanks Mark Brodinsky.


Sunday, August 24, 2014

Home with a Busy Week Ahead

Ian has been home for a few days and has been doing well. We have had a few desats with plugs but once we got them out it has been smooth sailing. 

This week is busy...Ian has a pulmonary appointment, we are seeing a new one because our other one moved away. He was supposed to see her last week but being in the hospital sort of made that difficult. We are looking to get a swallowing study scheduled to make sure Ian has not had any changes there. 

Wednesday marks the beginning of school...Becca will be starting middle school, we are nervous, anxious, excited and everything that comes along with it. We are looking forward to a new school, new teachers, new friends...as well as seeing our old friends. Ian has his last year at Chatsworth, it is bitter sweet, at the end of this year, 7 years will come to a close there...they have been a wonderful family to us...seen our family thru so much over the 6 years...he will miss the 1st day of school because of the pulmonary appointment but you do what you have to do.

Here is to a wonderful 2014-2015 school year.

Wednesday, August 20, 2014

Wednesday, August 20th

Well last night and today went the way we all planned it...at 4:30, after playing bingo Ian was discharged from the hospital. ..thank you to everyone for all the support, visits, taking care of Becca and everything else to get us through.

Tuesday, August 19, 2014

Tuesday, August 19th, Day 6

LLast night went well. Everyone slept, well for the most part, it took all of us a little bit to get to sleep. Rounds this morning went as we expected...they are decreasing his pressure support back to 6 (this is his baseline and will make all of his vent settings back to baseline). He will get his trache changed from the cuffed one they had to put in last week to his regular uncuffed one. This will put everything back to normal and he will be back to baseline with everything. The hospital will begin making plans for discharge which we are looking at for tomorrow. So the day has gone as planned and a good night will ensure discharge tomorrow. 

I have done a lot of thinking lately about how it is for Ian living with his disease. To try to understand his frustration as I know we get frustrated with it...I came across a blog a wife wrote about her husband living with ALS...as living with any form of SMA is just like it. 

What is it like to live with ALS? 
 It’s a brave question because the answers are not very pleasant. But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting. As caregivers watch their loved ones struggle with things that used to be easy and automatic, or as we watch others do those things sometimes I wish that everyone could see life from his perspective.
+

If you would like to experience just a tiny corner of an ALS life, I have a list of empathetic experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.
+

    1. Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
    2. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
    3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
    4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
    5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
    6. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
    7. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
    8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
    9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
    10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day. 
+This post originally appeared at bostern.comWe welcome your comments atideas@qz.com.
Take a look compare SMA and ALS...it really is amazing. 

Monday, August 18, 2014

Monday, August 18th, Day 5

The night was good. As for rounds this morning, his x-ray is stable no changes from yesterday which is good as they are making changes to all his settings. They have completely decuffed the trache and will change him back to his regular one tomorrow. As for his vent settings, all are back to his baseline execpt for his pressure support which they will decreased to 8 this afternoon and then to 6 in  the morning. That will put him back at his baseline for everything and looking at possible discharge on Wednesday. They have changed his treatments to every 6 from every 4 working back to every 8.

Brian and I are back to our routine of 24 hours on 24 hours off, trying to give as much time to Becca when we are on our 24 hours off. Tonight we all video chatted, it was good to be able to laugh with each other. Time to get some rest as the morning will be here soon.

Sunday, August 17, 2014

Sunday, August 17th, Day 4 PICU

At today's rounds the doctor said things are clearing up. They still see a small spot in the left side behind his heart on the x-ray.  The plan for today is to work on lowering his vent settings and oxygen back to baseline. The hopes for tomorrow is to change him back to regular trache. If all goes well for next 24 hours after that then possible discharge Tuesday night Wednesday morning.

Around noon they decreased his oxygen to 21%, which is room air. He did well until it was time for to get his bath. We have some ideas of why he has a hard time with them and working thru it but his oxygen did need to go up to 35%. 

The doctor just came into let me know that the rhinovirus came back positive. This is basically what causes the common cold to you and I. It can turn into pneumonia,  it just depends on if the pneumonia is viral or bacterial. As for Ian's treatment it does not change anything.  

Half of his settings are back down to his baseline. Keep up the good work little man.