If all goes well with our little "home regiment" experiment today, Jordan will be going home tomorrow morning. We decided to let Jordan hang out today with no more treatment (e.g. CPAP, oxygen) than she will have at home, and if she handles it okay for 24 hours here at the hospital, she's out the door to finish mending at home. So far, so good.
Okay, fingers crossed. Only 18 hours to go if this "home regiment" experiment works!
09 May 2008
08 May 2008
One Week Down
Jordan is still on the mend. Today the nurse practitioner took Jordan off the High-Flow oxygen, which I was very much in favor of, and Voila! She's doing great. She's almost weaned off the oxygen completely, and if she continues at this rate she'll be home within a few days. Phew! I'm trying not to get too excited, but I am really getting worn down & am ready to be outta here.
The nursing care today has been very good. We had a great nurse during the day, and the same awesome nurse we had last night that was so helpful in getting us moved & sorted out. I did hang out here all day (until 5:15pm), though, a little gun-shy to leave after yesterday's problems. Luckily Avery had pre-school in the morning, and then got to go to nana Noma's for the afternoon. I then met up with her & nana Noma at swimming lessons, and when that was over we rushed to the airport to pick up Devon! Not a minute too soon, either. Devon even sat in the back with her for the ride home, so she was in extra-heaven to have daddy back.
Now, if we can just get Jordan out of here & back home we'd be completely re-assembled. I can't wait!
The nursing care today has been very good. We had a great nurse during the day, and the same awesome nurse we had last night that was so helpful in getting us moved & sorted out. I did hang out here all day (until 5:15pm), though, a little gun-shy to leave after yesterday's problems. Luckily Avery had pre-school in the morning, and then got to go to nana Noma's for the afternoon. I then met up with her & nana Noma at swimming lessons, and when that was over we rushed to the airport to pick up Devon! Not a minute too soon, either. Devon even sat in the back with her for the ride home, so she was in extra-heaven to have daddy back.
Now, if we can just get Jordan out of here & back home we'd be completely re-assembled. I can't wait!
07 May 2008
A Mixed Day
I was tapped awake Wednesday morning by Jordan's pediatrician, and she was happy with what she saw! She's slowing weaning off the high flow oxygen, and she didn't have any major "de-sat" episodes in the night. Her lungs were still gunky, but sounding better overall. And I immediately noticed that she was much more awake & alert, and getting mad at the people poking & prodding her (instead of just laying there & not flinching during things like an IV start or a CPAP treatment). So, things were looking up.
But immediately I saw a problem brewing for the day. Jordan was down the hall away from the nurses station just a little too far for my liking. Now that she was getting her "umph" back, someone needed to keep a close eye on her. She doesn't cry for help, and clearly she can't press the call button. While I was getting dressed for the day she managed to twist (arch) herself into a tricky position, and on top of that managed to get her nose canula poking into her mouth. She was as mad as a hornet, and couldn't alert anyone to her situation. So, I chased down a couple of nurses and showed them how she was in distress, even though she was saturating 100% because the canula was blowing 50% oxygen right down her throat.
I didn't have a good feeling about the day as I left, but what is a mom to do? I needed to pick up Avery from school and spend the day with her. She's been a trooper through all of this, but whether she says it or not, being the "healthy" kid is no picnic either. On Monday she was tantrum-y with me, but trying to make best friends with all the nurses. It makes sense, if they all dote over Jordan they can all dote over Avery as well, right!
So, Avery & I did our errands, including making more Jordan food, getting new books at the library, making fun ladybug craft projects with Child Life, and even sneaked in a trip to OMSI with Heather, Ariana, and Aidan to "play" with the dinosaurs. All the while we were checking in on Jordan, who seemed anxious for some attention herself (after sleeping for the previous 6 days straight). I had planned to spend the night at home with Avery, but mommy instinct prevented that, and instead nana Noma graciously agreed to another sleepover with Avery, while I headed back to the hospital.
I was in tears within minutes of arriving. I don't know what happened with the day-shift nurse, but the night-shift nurse was run ragged by the mother of our new roommate, and things had already fallen apart. First I requested a room change, so Jordan can be seen from the nurses station -- vital for a child that doesn't cry or vocalize discomfort or pain. Then it was time to get sorted out, cleaned up, and back on schedule: her diaper hadn't been changed in hours, her food was an hour late, her medicine was still (after 6 days) on the wrong schedule from the pharmacy (which is particularly important when dealing with seizure meds), her g-tube stoma had dried blood around it, there was a rash on her chest, she didn't have any clothes on, her IV site looked like it had been burnt, and there was blood dried around her nose, down her cheek, and onto the pillow. Yikes! It was too much.
I'm happy to report that once I pointed these things out they were rectified very quickly, including an all-important room change. I can only guess that the mother of the child we were sharing a nurse with was just as demanding, unreasonable, & repetitive with the day nurse as she was with the night nurse, and the nurse couldn't take care of Jordan because of that (although that's hardly a worthy excuse!).
Today the attending came to talk about my issues with Jordan's care yesterday, then Jordan's pediatrician, then the Patient Relations Services representative, too. I am happy with their response to the situation, but a little worried about leaving her here by herself for any amount of time. Which, for $4000/night, I shouldn't have to worry about, right!?!?!
So, to make our case a little stronger, I posted this sign on our door:
Sometimes you just have to take things into your own hands, even when your hands can't be around every minute of the day.
But immediately I saw a problem brewing for the day. Jordan was down the hall away from the nurses station just a little too far for my liking. Now that she was getting her "umph" back, someone needed to keep a close eye on her. She doesn't cry for help, and clearly she can't press the call button. While I was getting dressed for the day she managed to twist (arch) herself into a tricky position, and on top of that managed to get her nose canula poking into her mouth. She was as mad as a hornet, and couldn't alert anyone to her situation. So, I chased down a couple of nurses and showed them how she was in distress, even though she was saturating 100% because the canula was blowing 50% oxygen right down her throat.
I didn't have a good feeling about the day as I left, but what is a mom to do? I needed to pick up Avery from school and spend the day with her. She's been a trooper through all of this, but whether she says it or not, being the "healthy" kid is no picnic either. On Monday she was tantrum-y with me, but trying to make best friends with all the nurses. It makes sense, if they all dote over Jordan they can all dote over Avery as well, right!
So, Avery & I did our errands, including making more Jordan food, getting new books at the library, making fun ladybug craft projects with Child Life, and even sneaked in a trip to OMSI with Heather, Ariana, and Aidan to "play" with the dinosaurs. All the while we were checking in on Jordan, who seemed anxious for some attention herself (after sleeping for the previous 6 days straight). I had planned to spend the night at home with Avery, but mommy instinct prevented that, and instead nana Noma graciously agreed to another sleepover with Avery, while I headed back to the hospital.
I was in tears within minutes of arriving. I don't know what happened with the day-shift nurse, but the night-shift nurse was run ragged by the mother of our new roommate, and things had already fallen apart. First I requested a room change, so Jordan can be seen from the nurses station -- vital for a child that doesn't cry or vocalize discomfort or pain. Then it was time to get sorted out, cleaned up, and back on schedule: her diaper hadn't been changed in hours, her food was an hour late, her medicine was still (after 6 days) on the wrong schedule from the pharmacy (which is particularly important when dealing with seizure meds), her g-tube stoma had dried blood around it, there was a rash on her chest, she didn't have any clothes on, her IV site looked like it had been burnt, and there was blood dried around her nose, down her cheek, and onto the pillow. Yikes! It was too much.
I'm happy to report that once I pointed these things out they were rectified very quickly, including an all-important room change. I can only guess that the mother of the child we were sharing a nurse with was just as demanding, unreasonable, & repetitive with the day nurse as she was with the night nurse, and the nurse couldn't take care of Jordan because of that (although that's hardly a worthy excuse!).
Today the attending came to talk about my issues with Jordan's care yesterday, then Jordan's pediatrician, then the Patient Relations Services representative, too. I am happy with their response to the situation, but a little worried about leaving her here by herself for any amount of time. Which, for $4000/night, I shouldn't have to worry about, right!?!?!
So, to make our case a little stronger, I posted this sign on our door:
I’m the quietest baby in the world
So, please help keep an eye on me!
I don't cry when I need help, but I do arch & get twisted around.
Try calming me down by repositioning me, changing my diaper, or talking to me.
Sometimes you just have to take things into your own hands, even when your hands can't be around every minute of the day.
05 May 2008
Still The Same. . . .
Not much to report today -- alot of the same. Jordan's tired & weak, but holding her own. Her labs are still very normal, all other systems fine, just "juicy Jordan." She's still just coughing & getting suctioned round the clock, and probably will for many days to come.
Easter (Oops, Spring Has Sprung Already)
[Yes, I am wayyyyy far behind, again, with holiday pictures. This time, though, it was Easter -- which happened way back in March! How did it get to be May already?]
For each of the past 4 years, since nana Noma retired and moved to Vancouver, she has thrown an Easter Extravaganza. And each year the party gets bigger, with more & more neighbors taking part in the festivities. And each year the weather has been wonderful -- how does she pick those perfect spring days year after year?
A yearly tradition -- the Easter Bunny Cake. When Avery was just 1 she had us all on the floor laughing as she dove into the cake & just started eating it with her fists while we were trying to take pictures of the girls with the cake. Luckily she has slightly better self control now that she's 4.
First there was food for all
Then a few games to pass the time while the "easter bunnies" got the baskets ready & the eggs hidden
The baskets(photo by Ed Wood)
The Easter Bunnies: Katelyn (blue ears) & Brandy (pink ears)
(photo by Ed Wood)
Waiting in line for the egg hunt to start
(photo by Ed Wood)
(photo by Ed Wood)
What did Ed get in his Easter basket? Oh, those are just the funny videos of us on the Flip
A few favorite shots (photo by Ed Wood)
Baby Kimber
(photo by Ed Wood)
Reyna
Reyna & her brother Noah
and their baby sister Julia
Julia's feet
with daddy Eric's hands
Best friends (almost like sisters) Kate & Avery, both age 4
(photo by Ed Wood)
Kisses for Jordan(photo by Kelly Wood)
All the girls take a listen from "The Daring Book For Girls"(photo by Kelly Wood)
Sisterly love, Avery age 4, Jordan age 2
Devon and his girls
All together(photo by Kelly Wood)
A family shot 2008(photo by Kelly Wood)
A family shot 2007(photo by Kelly Wood)
(photo by Kelly Wood)
Okay, seriously, enough with the posing
Kate & Ed(photo by Kelly Wood)
(photo by Kelly Wood)
(photo by Kelly Wood)
(photo by Kelly Wood)
(photo by Kelly Wood)
(photo by Kelly Wood)
Kyle was a little too old for the Easter Extravaganza, so he hung out in the front & watched the action while showing off a bit with his skateboard(photo by Ed Wood)
(photo by Ed Wood)
(photo by Ed Wood)
(photo by Ed Wood)
I'm not sure why they were following him, but they obviously thought Kyle was pretty neat on that skateboard
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