To Bill Miller, I know you don't want attention focused on you here on Steve's blog, but I just want to say thank you (and thank you Carol too). And I know that Steve would want to thank you also. Your thorough and thoughtful comment came at the perfect time, offering meaningful encouragement and inspiration. I know that MaryAnn read your comment to Steve yesterday and he was very interested. He wasn't feeling well so she is going to read it to him again today. And Joe, Steve's dad, has your contact info and is going to be reaching out to you. (BTW, to answer your question, the doctor said that Steve's airway was healing fine, no complications there.)
Unfortunately, Steve was in bed all day yesterday, he had a fever of 101 and he said that he had leg pains. He got to see Kylie briefly. Kylie was shy, which is not uncommon for her, but she did yell "I love you" to him from the doorway.
Steve had another scary episode on Friday night, his trach became clogged when the techs where turning him.The rushed the crash cart down to revive him. MaryAnn was informed by another patient that this was the second time that Steve was without air long enough to require these measures. No wonder why he sleeps better when someone stays with him at night.
April left yesterday, but Kris is coming today and will stay with Steve overnight. When I spoke with MaryAnn at 9:30 today, she said that Steve was still sleeping. We hope that he is going to feel good enough to get into the chair today.
As for the homefront, building will start on the house tomorrow. Joe asked for me to note that I may send out a request for "All Hands on Deck" for anyone willing and able to help move the construction along.
And Joe sent an email out to his contacts within government agencies, trying to find software that will help Steve communicate better. Among the many helpful responses that Joe received was an email from Steven Hawking's office. Talk about calling in the big guns! Pretty cool huh?
Let's all pray for a better day for Steve. Thank you everyone. I am continually moved by your loyalty and love.
Sunday, June 8, 2008
Friday, June 6, 2008
6.6.08
Steve had another outing today, this time to the new Adam Sandler movie. Unfortunately the whole experience revealed the massive physical and emotional challenges of Steven's current condition out in the world.
His lungs needed to be suctioned three times, and now this intense exercise had to be done in a movie theater/mall setting. His hands were cold, but his head felt like he was on fire, making him sweaty and uncomfortable. And some people stared as he maneuvered his chair. The toll of this new life is overwhelming. So what started as an exciting venture ended up just making Steve deeply sad and upset.
Tomorrow, Steve will see Kyle (April's 3 1/2 year old daughter) for the first time since the accident. Steve has been a huge part of Kylie's life for the two years that Steve and April have been dating. Kyle has been dying to see Steve; she misses him very much. I pray that the day will be full of smiles. I pray that tomorrow is the day that it starts to get easier. And I take comfort in knowing that April is staying with Steve tonight. I know that means that at the very least, Steve will start his day with a big smile. Thank you April.
His lungs needed to be suctioned three times, and now this intense exercise had to be done in a movie theater/mall setting. His hands were cold, but his head felt like he was on fire, making him sweaty and uncomfortable. And some people stared as he maneuvered his chair. The toll of this new life is overwhelming. So what started as an exciting venture ended up just making Steve deeply sad and upset.
Tomorrow, Steve will see Kyle (April's 3 1/2 year old daughter) for the first time since the accident. Steve has been a huge part of Kylie's life for the two years that Steve and April have been dating. Kyle has been dying to see Steve; she misses him very much. I pray that the day will be full of smiles. I pray that tomorrow is the day that it starts to get easier. And I take comfort in knowing that April is staying with Steve tonight. I know that means that at the very least, Steve will start his day with a big smile. Thank you April.
Thursday, June 5, 2008
6.5.08
The results of the test yesterday showed that when Steve swallows, liquids are still going down his airway instead of his esophagus. So yesterday wasn't Steven's day. But maybe tomorrow will be. Or maybe one day next month. It's still early. This long process requires all the patience and hope in the world.
Thank you to everyone who purchased a Steve O shirt! Steve's fund made $2,100 from all of your generous contributions on the T-shirts. Courtney placed the order and she should have the shirts the end of next week. Thank you Courtney! Also, there is going to be a Car Show and Yard Sale Fundraiser at Hazel Green High School on June 14. (psst, Kris, if you email me the flyer, I'll post it. xo)
Thank you to everyone who purchased a Steve O shirt! Steve's fund made $2,100 from all of your generous contributions on the T-shirts. Courtney placed the order and she should have the shirts the end of next week. Thank you Courtney! Also, there is going to be a Car Show and Yard Sale Fundraiser at Hazel Green High School on June 14. (psst, Kris, if you email me the flyer, I'll post it. xo)
Wednesday, June 4, 2008
6.4.08
Hey all. I have to be brief. I just bugged some eight-year-old to give me computer time in the family room here so that I could get one more post in before I leave.
Steve had his outing to Best Buy today. It went really well. Steve went with two other patients on trachs. The van ride was a little bumpy, but it all went smoothly. Steve was able to pick up some new albums, Three Doors Down, Kid Rock and the Foo Fighters. I am a little bummed we won't be able to listen to the new Foo together. Truth is I am just sad to be leaving. Saying goodbye to Steve is so, so hard, as some of you are very aware.
Steve slept really well last night I am so happy to say. He has his swallow test in under an hour. I have to shove off for the airport at 2. And I have a connection, so I won't be back in NY til late. I'll give you all an update as soon as I can.
Steve had his outing to Best Buy today. It went really well. Steve went with two other patients on trachs. The van ride was a little bumpy, but it all went smoothly. Steve was able to pick up some new albums, Three Doors Down, Kid Rock and the Foo Fighters. I am a little bummed we won't be able to listen to the new Foo together. Truth is I am just sad to be leaving. Saying goodbye to Steve is so, so hard, as some of you are very aware.
Steve slept really well last night I am so happy to say. He has his swallow test in under an hour. I have to shove off for the airport at 2. And I have a connection, so I won't be back in NY til late. I'll give you all an update as soon as I can.
Tuesday, June 3, 2008
6.3.08
Steve was upset yesterday afternoon. He has so much on his mind, a million thoughts and concerns. We tell him to be positive and patient and to take one day at a time. It's so tough.
He fell asleep around 8 and slept well for the first half of the night. But he was up intermittently starting from about 3 AM on. At about five this morning, they took his temp and he had a fever of 101. Damn, he had been doing so well on the fever front. But by eight, it was 98.4. They took a ton of cultures, and my fingers are crossed that it was just an isolated thing and not the sign of an infection. Oh and to even the Mozart out, we listened to a live Ozzy Osbourne album this morning. We talked about shows we've been too and Steve smiled at Ozzy chatting up the audience.
He had PT this morning. Katie put electrodes onto his leg muscles and the muscles contracted. That doesn't mean that he can feel anything, but it does mean that his muscles are responsive—which is a positive sign. Also, he's making progress with his neck exercises. He can move his head slightly left and right, and you can see his neck muscles working. That's a huge improvement.
It's hard for Steve to feel good about these small milestones, when he so desperately wants the basic functions of breathing, talking, and, eating. He does have a swallowing test scheduled for tomorrow afternoon. So please, please continue your endless prayers, and sending your hopes and energy toward these vital functions.
He fell asleep around 8 and slept well for the first half of the night. But he was up intermittently starting from about 3 AM on. At about five this morning, they took his temp and he had a fever of 101. Damn, he had been doing so well on the fever front. But by eight, it was 98.4. They took a ton of cultures, and my fingers are crossed that it was just an isolated thing and not the sign of an infection. Oh and to even the Mozart out, we listened to a live Ozzy Osbourne album this morning. We talked about shows we've been too and Steve smiled at Ozzy chatting up the audience.
He had PT this morning. Katie put electrodes onto his leg muscles and the muscles contracted. That doesn't mean that he can feel anything, but it does mean that his muscles are responsive—which is a positive sign. Also, he's making progress with his neck exercises. He can move his head slightly left and right, and you can see his neck muscles working. That's a huge improvement.
It's hard for Steve to feel good about these small milestones, when he so desperately wants the basic functions of breathing, talking, and, eating. He does have a swallowing test scheduled for tomorrow afternoon. So please, please continue your endless prayers, and sending your hopes and energy toward these vital functions.
Monday, June 2, 2008
6.2.08
Steve's asleep, comfortably relaxing in his chair. I recently read an article about how Mozart reduces stress hormones, promotes healing and stimulates growth hormones—so MaryAnn and I went out and bought him a couple of CDs. I know what you're thinking, Steve…Mozart? But it put him right to sleep. And sleep is good. You have to be open to anything.
April stayed with Steve last night. They watched a movie and then got some shuteye. But at one point during the night, Steve lungs needed to be suctioned, and because no one was bagging him (manually pumping oxygen into his trach) between suctioning, he blacking out for a few minutes. Very, very scary.
Steve had physical therapy (PT), followed by occupational therapy (OT). During OT Steve asked if that instead of playing a game—if he could work his arms. So he worked with them in a sling for a little while, and then focused on his seeing if there was any sensation with massage. Though he couldn't feel anything in his arms, you never know what tomorrow may bring. Steve's working to stay positive and hopeful toward every tomorrow.
Please keep the comments coming. Your voices from beyond these walls are so encouraging to Steve. Thanks everyone!
April stayed with Steve last night. They watched a movie and then got some shuteye. But at one point during the night, Steve lungs needed to be suctioned, and because no one was bagging him (manually pumping oxygen into his trach) between suctioning, he blacking out for a few minutes. Very, very scary.
Steve had physical therapy (PT), followed by occupational therapy (OT). During OT Steve asked if that instead of playing a game—if he could work his arms. So he worked with them in a sling for a little while, and then focused on his seeing if there was any sensation with massage. Though he couldn't feel anything in his arms, you never know what tomorrow may bring. Steve's working to stay positive and hopeful toward every tomorrow.
Please keep the comments coming. Your voices from beyond these walls are so encouraging to Steve. Thanks everyone!
Sunday, June 1, 2008
6.1.08
Steve had a pretty relaxed day today. He slept well last night since Kris slept in his room. He admitted to me this morning that he sleeps better when someone is with him. He got to stay in bed past noon then he got into the chair. A little after 2, Kris had to hit the road, which was tough on Steve. But shortly thereafter, April arrived and we went downstairs to the family room with a pool table, large screen TV and some windows. It's actually the room leading to outside, but it was too warm to venture out at that point.
A little over an hour later, we came back to the room. Steve started to not feel well, so he got back into bed around 5ish. April has had him smiling plenty. She really is like sunshine to him. It's pretty awesome.
I've been reading Steve some excerpts from a book I found in the library here called The Miracle Man. It's written by a man who had a C1-C2 break from a plane crash—and then went on to make some really miraculous recoveries. I told Steve that it's hard to be know what to say since I am not in his situation, so it just might be my job to bring him the voices that offer encouragement because they have been in the same place.
So overall, Steve had been feeling okay. Sometimes, he starts to feel warm in the afternoon, but once he is in bed and resting, he seems to feel better. His calendar for this coming week is pretty full between the hours of 10 and 3. He has physical therapy and occupational therapy, and then some educational sessions in his room in the afternoons. More soon. Thanks for you continued support and loyalty everyone!
A little over an hour later, we came back to the room. Steve started to not feel well, so he got back into bed around 5ish. April has had him smiling plenty. She really is like sunshine to him. It's pretty awesome.
I've been reading Steve some excerpts from a book I found in the library here called The Miracle Man. It's written by a man who had a C1-C2 break from a plane crash—and then went on to make some really miraculous recoveries. I told Steve that it's hard to be know what to say since I am not in his situation, so it just might be my job to bring him the voices that offer encouragement because they have been in the same place.
So overall, Steve had been feeling okay. Sometimes, he starts to feel warm in the afternoon, but once he is in bed and resting, he seems to feel better. His calendar for this coming week is pretty full between the hours of 10 and 3. He has physical therapy and occupational therapy, and then some educational sessions in his room in the afternoons. More soon. Thanks for you continued support and loyalty everyone!
Subscribe to:
Posts (Atom)
