Denise sang "Happy Birthday" to Gracie!
Today was Gracie's birthday, and this afternoon the respiratory therapist called to say that he had put a speaking valve in Denise's tracheostomy, and Denise wanted to sing "Happy Birthday" to Gracie. At first the plan was to hand the phone to Gracie, but she was still napping at day care. So I had them call back on our house phone and leave a message on the answering machine. Now we can play it over & over for the kids (Gracie loves it, Jacob doesn't recognize that it's mommy's voice). Maybe I should digitize it so you all can download it as an MP3 file. Hmm...
Again, Denise was upset today. She had been crying when I arrived, and indicated that she hates not having tissues or the ability to reach enough to wipe her eyes. She can't sleep. She's always in pain (yet refusing pain meds much of the time when asked). She misses the kids. She doesn't feel like she's getting better. She doesn't think the nurses can clean her up fast enough. I recognize that they're trying (and Denise is not on 1:1 care, so she has to share a nurse with another patient). But I also recognize that when you've messed yourself or have vomit on you, you want it taken care of PDQ. It's those times that I wish I had the skill & authorization to go ahead & do some clean-up myself (and save the more important technical stuff for the nurses). Today I was allowed to stay during the clean-up. It's incredible how they can give a bath & change sheets with someone still in the bed.
Anyway, I acknowledged Denises' frustration. I also tried to be positive, and there was already plenty to be positive about in the morning (and I bet that being able to speak and sing lifted her spirits, too).
Yesterday she was off the vent for almost 6 hours at a time, several times. She was off 18 hours yesterday! Now that's a two-edged sword. Today they took her off the vent at 4:00 in the morning. No wonder she can't sleep.
Her white count was down to 8.2. This hopefully indicates that the current infection is subsiding. That said, how many times have I heard that before? Also, her fever spiked lower last night (101) than the past few nights. Again, how many times have I heard that before?
She got a new PICC line today. Hopefully she won't pull this one out (probably won't, as she's not getting Ativan very frequently anymore).
Tonight I just found out that she was off the vent for an 8-hour stretch, and was sitting up. They put a phone to her ear and let me talk with her. Talk *at* her. They put her back on some dobutamine, and changed out the antibiotic again. I couldn't get any specifics over the phone, but I'll find out in the morning.
On the home front, the kids & I just got back from celebrating Gracie's birthday at Disneyland. A parent from my school works for Disney and signed us in for free this afternoon. Her & her son (one of my students) were our personal guides and provided us with lots of trivia that added to our enjoyment. We got there about 4:30, and left when the park closed at 8:00. It was wonderful... it wasn't very crowded. Since it was her birthday, she got to go to city hall and get a birthday sticker (and all the workers in the park wished her a happy birthday and talked to her). They also have a birthday phone that plays a birthday greeting from a Disney character. She met Snow White by the castle, we rode the carousel, the Dumbo ride, the Pooh ride, and the Peter Pan ride. When we went on the Storybook Land boat ride, she got to sit on the engine cowling with the guide and be the "co-captain" of the boat. We watched the Princess Parade and Ariel from "Little Mermaid" waved at Gracie. And there was ice cream. Now that I think of it, Gracie had no idea what Disneyland is... she only knew that she wanted to go, and some of the characters from Disney movies were there. I told her before we left that it was a theme park. She asked if she could go on the big slide, if I could push her for a long time on the swings, wanted to know if she should bring her swim suit, or the sand toys for the sand area. She also got out the leash for the dog. So her image associated with the word "park" is forever shattered. Now she may never want to go to the park by our house ever again. Jacob enjoyed the trip as well, screaching with glee quite a few times, though he certainly didn't "get it" as much as Gracie did. He operated the lever on the Dumbo ride with his foot so that we could fly up & down, though... his first step toward being a great aviator, perhaps. Gracie got the pink Dumbo. That was a big deal for her. There's a whole new way to enjoy that place when you go with your little kids. To the super school mom & son that blessed us with this trip, thank you, thank you, thank you! Today was one of the most pleasant days we've had in months!
Again, Denise was upset today. She had been crying when I arrived, and indicated that she hates not having tissues or the ability to reach enough to wipe her eyes. She can't sleep. She's always in pain (yet refusing pain meds much of the time when asked). She misses the kids. She doesn't feel like she's getting better. She doesn't think the nurses can clean her up fast enough. I recognize that they're trying (and Denise is not on 1:1 care, so she has to share a nurse with another patient). But I also recognize that when you've messed yourself or have vomit on you, you want it taken care of PDQ. It's those times that I wish I had the skill & authorization to go ahead & do some clean-up myself (and save the more important technical stuff for the nurses). Today I was allowed to stay during the clean-up. It's incredible how they can give a bath & change sheets with someone still in the bed.
Anyway, I acknowledged Denises' frustration. I also tried to be positive, and there was already plenty to be positive about in the morning (and I bet that being able to speak and sing lifted her spirits, too).
Yesterday she was off the vent for almost 6 hours at a time, several times. She was off 18 hours yesterday! Now that's a two-edged sword. Today they took her off the vent at 4:00 in the morning. No wonder she can't sleep.
Her white count was down to 8.2. This hopefully indicates that the current infection is subsiding. That said, how many times have I heard that before? Also, her fever spiked lower last night (101) than the past few nights. Again, how many times have I heard that before?
She got a new PICC line today. Hopefully she won't pull this one out (probably won't, as she's not getting Ativan very frequently anymore).
Tonight I just found out that she was off the vent for an 8-hour stretch, and was sitting up. They put a phone to her ear and let me talk with her. Talk *at* her. They put her back on some dobutamine, and changed out the antibiotic again. I couldn't get any specifics over the phone, but I'll find out in the morning.
On the home front, the kids & I just got back from celebrating Gracie's birthday at Disneyland. A parent from my school works for Disney and signed us in for free this afternoon. Her & her son (one of my students) were our personal guides and provided us with lots of trivia that added to our enjoyment. We got there about 4:30, and left when the park closed at 8:00. It was wonderful... it wasn't very crowded. Since it was her birthday, she got to go to city hall and get a birthday sticker (and all the workers in the park wished her a happy birthday and talked to her). They also have a birthday phone that plays a birthday greeting from a Disney character. She met Snow White by the castle, we rode the carousel, the Dumbo ride, the Pooh ride, and the Peter Pan ride. When we went on the Storybook Land boat ride, she got to sit on the engine cowling with the guide and be the "co-captain" of the boat. We watched the Princess Parade and Ariel from "Little Mermaid" waved at Gracie. And there was ice cream. Now that I think of it, Gracie had no idea what Disneyland is... she only knew that she wanted to go, and some of the characters from Disney movies were there. I told her before we left that it was a theme park. She asked if she could go on the big slide, if I could push her for a long time on the swings, wanted to know if she should bring her swim suit, or the sand toys for the sand area. She also got out the leash for the dog. So her image associated with the word "park" is forever shattered. Now she may never want to go to the park by our house ever again. Jacob enjoyed the trip as well, screaching with glee quite a few times, though he certainly didn't "get it" as much as Gracie did. He operated the lever on the Dumbo ride with his foot so that we could fly up & down, though... his first step toward being a great aviator, perhaps. Gracie got the pink Dumbo. That was a big deal for her. There's a whole new way to enjoy that place when you go with your little kids. To the super school mom & son that blessed us with this trip, thank you, thank you, thank you! Today was one of the most pleasant days we've had in months!
posted by Phil and Denise Williams at 10:49 PM
5 Comments:
Mr. Williams,
We hate to hear that Denise is feeling miserable however....We do feel that it is a blessing that she is awake and alert enough at this point to complain!! I like to think it means she is getting better!! Thank you Lord for a good day!
Phil & Denise, Gracie & Jacob -
The power of your faith is as amazing as your strength.
So glad that she is improving. Asking God to let the improvement stay steady and progressive. God Bless. It sounds like Gracie got a birthday present you all will never forget. Praise God.
I just sat and cried and cried at this last post. For two reasons...not getting good restful sleep is enough to drive anyone to depression. And not being there for Gracie's birthday and first trip to Disney would be such a blow when you feel so down. Denise...I am pulling for you each and every day. I'm glad I have specific things to pray for you...we'll keep praying!
Hey Phil, this is great. WHen someone is strong enough to complain and get frustrated, that is a VERY good sign! Hang in there, and be encouraged.
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