Friday, August 29, 2014


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 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 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 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
Take a look compare SMA and 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.

Saturday, August 16, 2014

Saturday, August 16th, day 3 PICU

The night was good and we all slept well. Due to Ian's incident on Friday afternoon they decided not to do his cough assist part of his treatments just for his 8pm. He handled all of his treatments back on at midnight well.

Rounds this morning were good. His x-ray from this morning showed improvement on the right side, not much on the left side. They are still treating him as if it is pneumonia so he is going to be on a 10-day course of the antibiotics. They decreased his vent settings this morning but not his oxygen. They are going to start decreasing his steroids, which were started by camp doctors on Sunday night.  Because of his incident yesterday they made him NPO (nothing by mouth) since the night was good they put him back on a regular diet. Ian was very happy about that and had chicken tenders and fries for breakfast/lunch. They spoke with Dr. Tunkel, Ian's ENT doctor, who scoped him last week at appointment he felt the trache length was good so they are not going to change that. They are going to keep the cuffed trache in for a few more days to help him and then will work on decreasing the cuff.

Ian had lots of visitors today which was nice as it helped to keep him awake. Thanks everyone who came to visit today. Sorry it got a little to busy in the room and we got in trouble.

The respiratory therapists who did his 8pm treatments said his right and left lower sounds clear and upper left sounds coarse. We will have to see how he is in the morning since we were told earlier today left lower is diminished.  They are talking deflating the cuff tomorrow to see how he does and perhaps Monday or Tuesday changing him back to his normal one.  They did not change his vent settings since this morning or his O2 but if makes improvements hopefully they will decrease the vent settings and his O2.

We also wanted to thank everyone who has offered to take Becca and who has had her....thank you for being a part of our village.

Remember treasure dream live it can change in a minute.

Friday, August 15, 2014

Friday, August 15th, PICU Day 2

Thursday night was good except for Ian decided to stay up until 3am.  At rounds this morning they decided to increased his vent settings again because they did not see much of a difference in his xray from yesterday. In addition they heard some decrease sounds on his left side along with what they already hearing on his right. They kept him on 40% oxygen.

Becca and I came down for a visit. Which was nice. Becca helped Ian build some legos. The child life specialist came to visit and she made her own version of bingo for the kids, they had a great time. Brian left to take Becca home and then to a friends house for dinner.

Around 5pm, Ian went in to distress again.  Nothing like Wednesday night but enough. So the docs changed his trache to what is called aga cuffed trache. This will close off the "leak" he has around his normal trache and allow more air to go directly into his lungs. We hope this is a temporary trache because with the cuffed traches people usually lose their voices. He has not completely lost his voice with this change but it is a little harder to understand him.  The rest of the day was better as he us stable again. They did have to increase his vent settings again but not his oxygen.

It is now 11:30pm and he is getting another treatment. I have told him that at midnight the TV is going off...I am not the most liked mommy right now. Oh well not the 1st time and won't be the last. Hoping for a quiet night.

Thursday, August 14, 2014

911, ER, PICU Day 1

There are no words to express last night. Yesterday started off just like any day, we all went where we needed to be. According to our day nurse it was a rough day, extra treatments, suctioning a little bit more then normal as well as on and off of oxygen due to decreases saturation levels. She pulled him thru and when she left at the end of her shift we hoped he was over whatever was going on. The night continued and Ian was good, was off oxygen, ate dinner. Nana, Pop, Josh and Devin came to visit after dinner. I went to my Girl Scout meeting, all was good when I left the house. 

Around 9pm, I got a text from Brian that I needed to come home. So home I went, not really sure what was going on. When I got home, Brian was doing Ian's nightly treatments. Ian was working a little harder to breath, I honestly can't remember of he was on oxygen at that point. Everything we were seeing we have seen before and worked thru with no problems. We continued to do his treatments (vest, cough assist and suctioning). Made it thru them all and move onto the next step of giving his nightly medicines. Again, pretty much all good, Ian was still working a little harder. Finished everything up and started getting some things together for the next day.  Ian did his clucking to get my attention, he needed to be suctioned. So I started, got nothing, he said there was something there, his numbers started to drop, down they went. At this point he was on oxygen but we turned it up to 5 liters. Pulled out the ambu bags to see if we could help break things up, we didn't break anything up because there was nothing to break up, however when we were bagging him up went his saturation levels. As soon as we would stop bagging him, down the went, they were steadily declining into the 80's and 70's. This is not a place you want to be. Brian went across the street to get our wonderful personal respiratory therapists (he is not really our personal one but having Mr. Mark live across the street and be a respiratory therapist is a huge plus in our book). Mr. Mark assessed Ian, tried all his tricks, which we had done already...listened to Ian and didn't hear good things. At this point it is around 9:45, and in walks Ian's night nurse hearing me ask Ian if he wants me to call 911 to take him to the hospital. Ian said no which did not surprise me, I told him we would see what we could do to manage him at home. I had already been in contact with his Gilchrist nurse. We walked thru everything with her and she was getting in touch with Dr. Hutton, Gilchrist MD. Thru all of this Ian was still struggling for breaths while on 10 liters of oxygen. His numbers were just above 90, none of this was good. I told Ian we had no choice but had to call 911, managing him at home was just not going to happen. 911 was called, while I was on the phone with them Mr. Mark and our nurse were working on Ian and trying to keep him calm...Brian, Becca and I...well...Brian was somewhere breaking down. Becca was in her room with the door closed (my guess is trying to pretend this was not happening) and I was trying to hold it together while on the phone with 911 giving them the information they needed. 

It seemed like an eternity waiting for the emergency team to get here. I went into mommy mode...Becca's mommy...needed to figure out who was going to come stay with her...thank you to our wonderful neighbor, who put her personal loss aside and came over to sit in Becca's room with her and Joey while the paramedics were working on Ian and getting everything ready to transport him. Thank you to Mackenzie and Erika for coming to sleep here with Becca so both Brian and I could go to the hospital. I went into talk to Becca to make sure she was soon as I told her we called 911, she started to cry, pulled herself together and said ok, I understand. Have to love my girl. Mommy mode was over...well Becca's mommy...she was taken care of. 

Now time to have my breakdown....paramedics were here working on Ian. The nurse was helping giving them information and trying to help me collect myself...the paramedics asked me to go get Ian's protable vent ready for him so once they got him downstairs they could get him on it and out the door...I did this while stamping my feet and yelling....I HATE THIS FUCKING DISEASE...I HATE THIS FUCKING DISEASE. Tantrum was over...vent was together...Brian was getting meds and other things together which needed to come with us...I have not idea what time it is at this seems like this whole process took hours, I know it did not. From the time it took to get Ian downstairs, out of the house and into the ambulance, his saturation levels we down to 71, his lips and skin around his mouth were ash and blue...not something you want to see on your child. I rode in the ambulance with Ian and Brian followed in the car...I have not idea how long the drive was to Hopkins, well actually I do from driving it so much but it felt much longer then normal. The paramedics were wonderful, keeping me calm, Ian fell asleep on the ride which was good because sleep for the rest of the night was hard to come by. 

In the ER, they got him stable, took x-rays, did blood cultures, did a trache culture, all the usual stuff. Nana, Pop, Aunt Susan and her friend Ester came down and we all rotated being in the room with Ian. Once Ian was stable, I would say some where around 1AM, they had all left and it was just Brian and I there with Ian. We tried to get a little bit of sleep while we waiting for the doctors to come in and let us know what the plan was...finally they came in to let us know they were admitting him up to the PICU (good thing because if you thought we were taking him home you were wrong, as Brian has said this is not our first rodeo). Now it was time to wait for a bed to be ready and for the PICU team to be ready for him....well that did take forever. We did not get to a room until it was time for everyone there to start gathering their information, poking and prodding Ian some more, and he had been sleeping. I think everyone finally left the room for us to try to get some sleep around 5AM. 

When I posted this status update on Facebook last night, we were not even into thinking we needed to call 911, nor was Ian really having major issue..yet...Rough day/night and nope we don't always do it so gracefully. I posted it because it was just a rough day and I wanted to say we don't always handle it well and aren't always strong.

The 1st x-rays came back with a spot, which they were not able to tell exactly what it was so they sent him to radiology for another one to try to determine if the spot is a plug, pneumonia or collapse. The 2nd x-ray showed things clearer but still they were still unsure if a plug or pneumonia. Ian's white blood cell count was elevated so they are thinking pneumonia, however Ian is not running a temperature...well Ian never runs a temperature. They started him on antibiotics. He was on and off of oxygen today and when I left the hospital tonight he was on 40% oxygen.They are keeping a close eye on him as things could get worse before they get better. His vent settings were increased, with the plan to be able to decrease him back down to his baseline. He has been sleeping on and off all day.

I am home with Becca tonight, hoping to get some sleep and hoping that Brian and Ian will get sleep as well, especially since Ian has been sleeping on and off most of the day.

Sorry for the in depth post....I needed to be able to put it all into words...

Sleep well boys...your girls will sleep well here.

Monday, August 11, 2014

Three Weeks, Two Weeks, Two Weeks

Three weeks - Becca to Camp Louise took a lot of work.  All her anxiety, worries, fears... some of them normal for children, most of them not but for her all part of her daily life.  So many people worked with us to prepare her for these 3 weeks at sleep away camp. And what an experience it was for her, for the first time in a long time she got to be "normal" and not our "normal" but what most consider "normal".  Becca spent 3 weeks doing what other 11 year olds do,  meeting new friends, playing with them, listening to music, making things in arts and crafts all while NOT helping with treatments, wondering what nurse is coming today/night to take care of her brother, listening to machines go off (all part of her "normal"). She gained so much from her time at camp, most of what she/we have yet to learn but are looking forward to learning over time.  She left one child and came back another. Until next summer....Camp Louise....21719.

Two weeks -  Ian's time at Camp Simcha Special, one of the most magical places around. This was his 2nd year going, and it was just as wonderful as the 1st. He did things he has never done as well as things we never thought he would do again all the while getting all the care he needed and much more. He got to go swimming (he used to be a fish but has since become afraid of the water), he played baseball, he made a candle...all things "normal" kids do at camp. He had color war...oh wait he got to do things not "normal" kids do at camp, a helicopter ride, welcoming all the bike riders from Bike4Chai cross the finish line....he left one child and came back another. Until next summer....Camp Simcha Special.....12737.

Two weeks - Brian and my time without children....a very special we will cherish over the year and will begin planning for ....Until next summer....where will we go.

While at camp one of the post from the director of Camp Louise: "The Middah for that week was finding contentment with what you have. Some people think it is hard to change how you think and feel, but brain scientists have proven that it is actually not hard. Just by repeating a phrase or an idea over and over again, we can re-write our brains to believe and feel differently. No matter what you have or what you get, try repeating the phrase, 'I have enough' over and over again. You'll soon come to believe it and feel more content with what you have." 

Thank you to everyone who helped make the last three weeks, two weeks, two weeks possible and reminding us to treasure, dream and live.