Archive for June, 2009

Tired

June 30, 2009

Hello friends!

I apologize, but tonight’s post is going to be super-short! Not because there’s not stuff to share, but because I can barely put together complete sentances. I’m sooooo tired tonight.

Scott started his 24-hour trach plug trial. If he does well (which I fully expect he will!) he will get his trach out tomorrow. That’s good stuff!

We all had a good day! I hope you did, too!

Quiet Sunday

June 29, 2009

Hello All!

Just a quick note to let you know all is well. Scott and I spent a quiet Sunday together. Other than some range of motion exercises, Scott had a pretty easy day. Tomorrow he is back to work! Erm, therapy…

Will talk to you then!

Plugging

June 28, 2009

I forgot to mention that Scott’s 16-hour plugging trial went very well. He was able to keep it in the whole time and maintain good, strong vitals. 

The plan is to do the 24-hour trial on Monday. If that goes well, the trach goes away!

Saturday

June 28, 2009

Scott got quite an early morning work-out today! He was on the tilt table for over an hour. His physical therapist decided to keep him on it while she was building him a new wheelchair. She said as long as he was tolerating it, he might as well benefit from the extra time. And he had his eyes open the whole session.

Later this morning, Scott had OT. Other Stephanie did a lot of oral stimulation with these bubblegum-flavored sponge-on-a-stick thingies. Scott made some great faces!  He was definitely not a fan!

The rest of the day was pretty low-key. Scott & I watched a Married With Children marathon & we had a couple of nice, laid-back visits. 

Hope you had a nice day, too!

Pizza & Beer

June 27, 2009

Scott’s doing great on his plugging! When I left this evening, he had only a few hours to go to complete the 16-hour trial. If that goes well (I don’t have any reason to suspect it won’t) he’ll be doing the 24-h0ur trial either tomorrow or Monday. Then we will see that trach go away for good!

Today was pretty uneventful. Unless you count Scott’s major response to me sticking my fresh coffee under his nose. He moved his lips and mouth and actually tracked the cup with his eyes. Tomorrow, I will bring in pizza & beer!! 😉

Sweet dreams, everyone!

Sigh

June 26, 2009

Hi friends!

I got in early today to catch Emily’s first ST session with Scott. Same ‘ol routine with the exception of having his trach plugged for the whole thing. And the hope that he could tolerate a full 8 hours! She assured me that she would be around every hour to check his oxygen, heart & breath rates.

8:30 came and so did Becca & DJ for Scott’s PT. Someone else was on his tilt table, so he got an in-bed PT session. It still wasn’t easy for him, bed or not. After a good stretch, he was set up on the edge of the bed for the hour-long session. They mostly worked on reaching and grabbing different items and also focus and tracking those same objects with his eyes.

Later that morning, Keyonna & I got Scott into his wheel chair. His eyes had been open all morning and he didn’t have another session until the afternoon, so we went outside. There are some pretty courtyards and gardens on site and we sat in the shade until Scott’s forehead started to bead with sweat. It was that hot even in the shade.

Once we got back inside and settled, I expected Scott to konk out. He stayed awake though and while I tried to read, I couldn’t help but watch him. It occurred to me that he was actually watching his own busy hands work. His gaze would change each time he touched a different thing: the stuffed dog’s fleece bed that was in his lap, his t-shirt, the wet wash cloth I gave him. Those movements seem more purposeful when his eyes are open.

Scott managed to stay awake for most of his OT session, too. But after that he was done! He slept the rest of the day; I only saw his eyes again for a minute here or there. At 4:00, Emily came back and announced that it was time to de-plug Scott. While I’m very happy that he tolerated it, I was a little sad to see it go. I haven’t heard Scott’s voice in weeks and listening to him sigh while he slept was really wonderful.

More Thank Yous

June 25, 2009

I swear I have thank-you notes on my to-do list, but in the mean time, I wanted to thank you all for your continued support. I neglected to thank those of you who donated items to the silent auction at the fund raiser. Carrie, I neglected to thank you for your work handling those funds raised. Thanks to those of you who have donated your time to cover Scott’s shifts. I can’t tell you how HUGE a relief it is to only have to worry about Scott. And thank you, Dr. B., for listening.

Thanks also to those toting around arm bands and t-shirts, conducting spur-of-the-moment fund raisers and playing the pipes near an empty boot. Thanks to our neighbors for helping me to take care of our house, my health and well-being. Thanks to all of you who continue to send notes, emails and cards with your words of encouragement. Thank you for your private donations.

I can’t imagine doing this alone. I am so grateful that we don’t have to.

Carpet for Breakfast

June 25, 2009

So my plan was to get up early to head down to the hospital to make it to Scott’s early morning PT session. Instead I was taking an 8 pound wiener to the vet. Elsa was apparently bored last night so she ate some carpet and chewed up the wooden beads hanging from our living room blinds. 

Had she been her normal perky self I wouldn’t have worried much about it. After all, 50% of her diet is paper. Ok, that might be a bit of an exaggeration, but she eats a lot of stuff she shouldn’t… Instead, she was lethargic & a bit shaky on her feet. I have the “gift” of an overactive imagination, so I decided that I really needed to get her to the vet.

$240.00 later, Elsa had received fluids, been x-rayed, and given canned food – which is essentially a treat. Hmmm… I’m not sure I’m teaching her a lesson here. 😉 The good news is, she is acting like herself again.

And I realize you don’t read this blog for puppy updates, so here’s the latest on our boy:

Scott had another good day. His therapy sessions were good. He was awake for them. Mostly! His RT keeps commenting on how much better Scott’s lungs sound and how well he is doing. Today, his Speech Therapist, Emily, plugged his trach for two different 25 minute sessions. He tolerated it very well. 

For those of you who aren’t familiar with a trach or the weaning process (I sure wasn’t until recently!) this is how it goes:

1. The trach is down-sized. Scott is now at a #4 trach. That really means nothing to me as I don’t know what he started with, size-wise, but has gone down twice. Or is it 3 times now?

2. The trach is fitted with a speaking valve. The speaking valve allows air to still be taken in through the trach, but does not allow air out. Thus, it passes passed the vocal cords and out of the nose or mouth.  Currently Scott has tolerated this during his speech therapy sessions around 20 minutes at a time.

3. The trach is fitted with a plug. A small plastic plug is placed in the trach and does not allow any air to pass in or out. All breathing is through the mouth and nose just as if the trach was not even there. Today Scott tolerated 2 25-minute sessions. Tomorrow they are going to plug as tolerated for a max of 8 hours.

4. The amount of time plugged increases. Once Scott can tolerate 8 hours a day, they try for 16 hours the next. If that is tolerated, they will move to 24 hours. And if that works out okay, the trach goes bye-bye! Yay!

I will be sure to let you know how that goes! Good night to you all

Tuesday

June 24, 2009

Scott had quite a busy day today. Along with his regular therapy, he had a visit with the ENT Doctor and another test.

Scott’s ENT is very happy with how Scott’s lungs, vocal cords & nose look. He is also pleased with the amount of secretions he’s producing. Or, I should say, lack of secretions.  He wrote the order today to start plugging his trach. They are going to start tomorrow and see how long he tolerates it. The next step will be to see if he can tolerate 8 full hours. The following day, they will see if he can tolerate 24 full hours. When that happens, his trach can be safely removed. The doctor says the hole heals up in 2 days on it’s own.

There was another test today and Scott scored a 5 again. Scott’s team believes he is just not ready for this type of aggresive therapy and might need a little more time to heal & rest. That means we are in for some more waiting…

Scott continues to improve daily, however. I don’t want you to think he’s slacking! 😉 His eyes are now open for a few hours every day. His neuro-stimulant drug was cut in half and he is awake more. And today, for the first time, he was able to follow a mirror and picture down with his eyes. And he did it several times with 3 different people. We cheered each time!

Sweet dreams, everyone. Talk soon!

Guest blogger……

June 23, 2009

Hi, blog-world! This is the first, and prolly the last guest blogger. Steph is taking a break from the blog tonight, but she was with Scott today and reports progress. So Scott did go outside today…and his  EYES were OPEN the entire time. Progress, because I (the guest blogger) knows that Scott loves being outside, esp. when it is sunny!  Please keep Scott in your thoughts!    -DK    Steph will be back soon……so don’t worry.