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
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.
- Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
- 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.
- 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.
- Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
- 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.
- 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.
- 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?
- Go to bed and stay in one position for as long as you possibly can, moving nothing.
- 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.
- Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day.
Monday, August 18, 2014
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
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
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
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
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 okay...as 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 point...it 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 4AM...now 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.