Thursday, March 31, 2011
Every day Kean is getting better and better.
And he's either sleeping better or getting used to the Oxygen because he's
pulling out his cannula less and less...
which means I'm getting more sleep.
Last night, I think I only got up 9 times.
Not that I'm keeping track or anything.
His lungs sound good, he's happy and he's full of energy.
We go to the doc tomorrow for a follow-up.
I'm certain, she'll be impressed with how good his lungs sound.
I'm guessing we will be off the Oxygen sooner, rather than later.
My mom took the girls to the zoo this morn since it's Spring Break.
She then watched Kean this afternoon, while I took them swimming at the Y with
Aunt Dana and the cousins.
It was so much fun to get out and play.
Monday, March 28, 2011
I went to post today and blogger wouldn't let me add
any pictures. They say I've used up all my space.
So below, I've figured a way to circumvent it
by loading my pics onto flickr.
I'm blindly figuring my way through it.
Meanwhile, Kean is thrilled to be home.
He seems and acts so much better.
His biggest hurdle is still the fact that he goes to sleep
and then de-sats. That's why he's on Oxygen.
His lungs are still too gunky to get deep breaths.
Here's the sheer torture part-- the cannula bugs him, so he pulls it out
pulls it out
pulls it out.
It's not a big deal during the day.
We just pop it back in over and over again.
We just pop it back in over and over again.
But at night....
I now know what it's like to be in Hades.
An alarm sounds each time he pulls it out.
Let's just say I stopped counting after I got up 22 TIMES
the first night home from the hospital.
Last night wasn't any better.
I have not resorted to duct tape --- YET!
I'm soooo open for suggestions.
Here's a bit of our newest decor. The big machine takes room air and makes it into Oxygen. The others, monitor the amount of Oxygen he's getting and his other vitals. Not pictured: the four portable Oxygen tanks.
Free!, a photo by LLB on Flickr.
Did you notice where his Oxygen Cannula is? Clearly, not where it's supposed to be. We play this game all day and all night. he pulls it off (sometimes clear off his cheek stays like in this picture) and I get up and put it back in. In my desperation, I even put socks over his hands.
So far, the biggest loser is my sleep!
Saturday, March 26, 2011
MLK couldn't have said it any better.
We are free at last!
We escaped at 4p.m.-- almost one week to the minute that we were
The two girls escorting Kean down to my car are Candy Stripers. (Not sure how to spell that so it doesn't look like Strippers).
I used to be one of those in Vegas (no, not a Stripper, a Striper)... but had a cute red and white dress.
Guess times have changed.
Kean got out of the wagon and into his car seat and literally giggled.
He was sooo happy to be home and to see his Dad and Sisters.
Hopefully, he'll sleep really well and his Oxygen monitors will behave.
You should see the medical equipment in his room tonight.
It's really not a far cry from what we just left behind.
Thanks everyone again for your love and support.
I'm off to bed!
Friday, March 25, 2011
I talked with Kean's doctor tonight.
She wants him in overnight and will meet me here Saturday morn
to make the decision as to whether I can take him home.
It will be with oxygen-- unless we have some miracle tonight.
Either way, I'm excited about the good chance of going HOME!
Greer ventured back to school today... after missing
Today is the last day of school before the week long Spring Break.
I guess we could say she's easing herself back into the saddle.
Keep your fingers crossed about tomorrow!
Kean's making progress. He looks better and sure acts better.
He LOVED having his sisters visit.
I think, perhaps, he missed the noise.
Our biggest issue is that every time he goes to sleep, his oxygen levels plummet.
His doctor mentioned she might send me home with him on Oxygen.
I'll gladly take that.
But they are also watching his right lung.
He sounds much, much better.
But on an earlier X-ray, it looked as if he has some of his lung collapse or like he had some inflammation debris concentrated in that area.
I took this picture a few minutes ago-- right before his nap.
He put the "E.T." red light foot sensor (that keeps track of his breathing, pulse, heart rate etc.) in his
mouth while I was changing his diaper.
He shorted it out.
So this is while we waited for a new one.
No big deal.
They're only a hundred clam shells each. Yikes.
I should hear from his Doc this evening about the possibility of going home tonight or tomorrow.
Trying not to get my hopes up...
P.S. He went from a prone position to a sitting position three times on his own today.
We've been waiting for this for months!
A round of applause for Kean-- Yeahhhhh!
Thursday, March 24, 2011
Kean's pediatrician came in last night to check him over and talk with me.
In short, we're keeping him hydrated enough-- just barely.
We are keeping track of everything that goes in ... and um, everything that comes out.
His lungs are improving slowly- but enough that the breathing treatments and suctioning
has been spread out to "as needed" or every 8 hours.
The last suctioning pulled up tons of blood and clots. I think
the inside of his nose is now the consistency of hamburger.
Sure wish I could change places with my boy.
He's being a trooper. He's grouchy but hey, who wouldn't be?
The doc said the biggest hurdle we face is getting his oxygen levels under control.
She's willing to send us home with an oxygen tank-- but only if we can get him under a certain level.
So that's today's big hope.
As for Greer, she's doing much better. Her cadaver breath (did you know that's a lovely side effect of taking tonsils out?) is getting less deadly. She's reading and talking and pretty much only in pain at night when she sleeps with her mouth open and her throat dries out.
Now if we can only get her to eat more.
She's lost at least 6 pounds with this-- and she's my one that can't afford to loose an ounce.
Other than that, we are coping and hanging in there.
Thanks again for all the kind notes, support and offers.
Wednesday, March 23, 2011
I have to tell you, Kean seems to be doing so much better.
For one, he's not crying non-stop anymore.
And two, he'll have a few moments here and there where he'll play and actually eat something.
His lungs are still pretty wheezy, so the RT is doing a new procedure to try and break up the gunk.
The machine is a like a low key, vibrating jack hammer.
Kean seems to like it-- he doesn't fight her.
They're doing this procedure every four hours around the clock.
(Notice she's all decked out in lovely yellow-- Kean is in isolation since RSV is contagious).
(Notice she's all decked out in lovely yellow-- Kean is in isolation since RSV is contagious).
As I told you earlier, his IV collapsed, so we are working hard
to keep him hydrated with lots of liquids and food.
How are we doing? Hmm, I'd give us a C.
He can't have milk (too mucusy-- is that a word?).
And he's not real hip on Pedialyte.
Apple Sauce? In moderation.
Frozen Yogurt? Surprise-- a big no!
I brought Greer and Reese up for a quick hello-- but was so busy trying to keep
them from smothering him-- I forgot to take any pictures.
Byron and Holland came up last night.
I don't know who was more excited -- Kean or Holland.
So when are we going home?
That's the $64,000 question or whatever they charge here at St. Luke's.
His lungs still sound pretty nasty
and he's on twice the amount of oxygen he should be on for a baby his size with RSV.
We've turned some good corners but clearly have a few more to go.
Thanks so much for the love and prayers.
Thanks so much for the love and prayers.
Tuesday, March 22, 2011
I do believe the little guy is doing a bit better today.
I stayed at the hospital 'til after midnight to make sure he was really out.
He had an awful day yesterday. Just cried and cried-- really.
From 3p.m. when they were doing his deep lung/nasal suctioning until
after 10:30 when they finished doing it again. It was a long day.
But I had lots of support. Thanks to Ron and Elly for the gourmet dinner
and "spelling" me with Kean.
And Deb for trying to comfort the little tyke.
And for the blessings from Stan and Kyle and then again from
Ron and Matt.
And Teresa for feeding my family last night
and for the too short of a visit with my favorite nurse in the world, Liz!!!
We got through I think the hardest day.
My mom went down early this morning so I could spend time with Greer (Tonsil Girl)
and Reese. They were feeling rather needy.
We're heading down to the hospital with lunch today. I'll then stay with Kean
and she'll take the girls.
Have I ever told you how much I love my mom?
As for Kean, I hear he's much more like himself-- not crying non-stop and eating some.
His IV failed last night-- but we are going to try and nourish him with food and bottles.
I'll know more this afternoon.
THANKS EVERYONE for the support, words of love and kindness.
Monday, March 21, 2011
Guess where we are?
Back at my home away from home:
Hotel St. Luke's Hospital.
Kean's had a cough for a few days and I was hoping to
beat it with breathing treatments at home.
Not to be...
Sunday afternoon, he took a bad turn and here we are.
And I tell ya, we Barker's like to do it up right.
He has RSV and Pneumonia.
He's been running a temp here in the hospital of 104. Ouch!
That's finally under control this morning.
But the poor guy has to get tubes stuck down his nose to his throat to suction out his lungs
every two hours.
He's not liking it much.
On the home front, Greer is doing much better. Except at night.
I think she's sleeping with her mouth open and those tender little tonsils or what is
the space where they used to reside... is drying out.
She keeps waking up in pain.
Which means for the five hours I was home last night to try and get some sleep,
I was up with GiGi.
And then there was that really fun moment when Reese decided to wake me up
to tell me she'd just had a dream about a ladybug.
I tell ya, this parenting thing is not for the faint of heart.
It's really for the sleep deprived.
Thursday, March 17, 2011
Happy St. Patty's Day.
Reese got all excited this morning to find a trail of shamrocks with real, live glitter sprinkles about...
and candy (of course).
So excited in fact, she blurted out that the "Apricot" had come!
I don't think I'll ever again picture Leprechauns as green.
In my mind- they'll from here on out- be a nice shade of orange.
Day three of tonsil world at my house.
And I think it's been the worst so far.
Well, maybe not. At least she's not still throwing up.
But she is in pain and getting her to eat anything today was like getting Reese to hold still
or be quiet for half an hour.
She's not like the rest of us, able to go a few days without much food.
The child weighs about as much as a stuffed animal.
In fact, we joked that when they took out her tonsils, she likely lost a pound or two.
Tuesday, March 15, 2011
Our little Miss Greer went under this morning to get her tonsils and adenoids taken out.
She was super brave and the nurses and doctors were beyond cute with her.
In case you are wondering, she hasn't had chronic ear infections or sore throats...
However, she snores like a 70 year old man.
Holland has even asked for ear plugs - it's that bad.
Holland asked us to have the doctor take the camera into the operating room.
But we did take a picture of her twice the normal sized tonsils.
I know... gross!
The pic was mostly for Holland.
She was disappointed we didn't get to bring the little goodies home with us.
Monday, March 14, 2011
Friday was quite the banner day for the Barker girls.
Greer was given an award at her school for being kind and compassionate.
They had a school assembly to honor the kids.
Of course, Reese was very proud of her big sister...
As was Kean.
He was loudly cheering on Greer in his own cute way.
Then the whole family headed over to one of the local high school gyms for the District Speed Jump Rope Competition.
Holland was one of the reps for her school's 4th grade forward speed jump.
She went up against the top two girls from 15 different schools.
Notice in the picture above, there are five judges counting (they have clickers)
how many jumps she makes in 1 minute.
Holland did great. She made it through all three rounds, to the finals.
She placed in the top ten (only the top six got awards).
But she was fine with her performance and raring to go again next year in the
5th graders competition.
It was fun to see her so focused and so exhausted by the end of the night.
By the way, the competition took a mere 3 hours and 22 minutes.
Not that I was watching the clock.
Wednesday, March 9, 2011
Greer brought her spelling list home from school the other night.
Take a gander at number 15 on the list.
Let me help you, if you can't make it out:
Yup. You read that right.
We asked her several times if she had just by chance copied it down wrong.
But nope. She insisted the word was W-h-o-r-e... you know, like I "wore" my dress to church.
(By the way, the whole church example is a pretty interesting choice considering the word... but that's a topic for another day).
Anyway, before we decided to change the name of her school to "the Galileo Math, Science and Swearing Magnet"... I called her teacher for help.
In between giggles, we got to the bottom of it.
Just so you know, the spelling word is W-h-o-s-e.
Tuesday, March 8, 2011
Right before Kean's therapy, Reese announced she had some work to do.
She told me she has to practice her "training to become a Musketeer".
You know, the ol' kicking, flipping, sliding down walls and riding horses side saddle stuff.
Thankfully, we have no sword play - as of yet.
I thought you'd like to know, Kean had his best therapy session yet.
Besides practicing climbing up stairs and sliding down them (hmmm, sounds kinda like Musketeer training),
the crawling exercises and getting into a sitting position, Maureen showed him that someday his legs will be for standing-- not just playing "this little piggy"...
He's getting stronger and stronger (and cuter and cuter), if I do say so myself.
Monday, March 7, 2011
So my mom turned the big 7-0.
Which is shocking to me... shocking because if she's getting older, that means we (me) are all getting older.
Thankfully, she looks and acts about 50.
We threw a big party for her last night-- big as in about 80 to 100 people in her house.
I think just about everyone there was related in some way or another.
This is my Aunt Jean and my mom's sister, Daleen and brother, Larry.
See, doesn't she look young for 70.
It gives me great hope.
(Thanks mom and dad for the DNA).
The most exciting part of the party - for me anyway- was when she opened my present.
I've been working on it for quite a while.
We put together a list of "70 Things We Love About You..."
It was so fun.
I got responses from all the grandchildren, her children and her brothers, sisters, husband
and 92 year old mother.
Some were hilarious, some were touching and some were inspiring.
I kinda think she liked it-- at least a little bit.
Thursday, March 3, 2011
My Aunt Karyn was one amazing woman.
When she was diagnosed with a rare form of cancer, instead of becoming bitter, discouraged or playing the
'why me' game, she grew stronger, more faithful and more at peace with the life she lived here on earth and the future awaiting her.
She is one of 13 children. I know, crazy-- but crazy good.
Our family is extremely close and I adore having so many aunts, uncles, cousins and 2nd cousins.
All of her living sisters and brothers converged in Afton, Wyoming last week for her funeral-- including my Aunt KLynn who flew in from Russia.
Many of us arrived a few days early to help out and to take care of all of the family flowers.
Several of my Aunties are pretty darn creative
(they used to decorate the Utah Governor's Mansion for the holidays).
Take a look at the casket spray they put together.
I swear, these pictures don't do it justice.
We also prepared the room for the viewing. They had family pictures everywhere.
And I've never seen so many flowers and plants sent from friends, colleagues etc.
My Aunt Karyn sat on the school board and was a substitute teacher. Her husband, my Uncle Bill is the head of the Wyoming National Guard, a city council member,
a retired special ed teacher and wrestling coach.
I think between the two of them, they know just about everyone in Wyoming.
You can't see this very well, but this was one of the most touching arrangements.
The two little bird cages on the left of the picture were from my Aunt Karyn's grandchildren.
The green wind chimes hanging from the larger cage-- there's one for each of her 24 grand kids.
The two birds on the top of the cage have "Grandpa" and "Grandma" written on them.
Then my Aunts had each grandson and granddaughter sign their names on the cage.
A couple of my Aunts made this heart wreath to be from Aunt Karyn's children.
Notice the six different bouquets of flowers to represent each of her six children.
And this was my assignment. Along with my much more talented, Aunt Tamara, we were given this egg box
to fill-- an arrangement from the Walker Family-- Aunt Karyn's siblings, nieces and nephews and mother.
Finally, a couple of my Aunts put the red rose bouquet together from my Uncle Bill to his wife.
This is so not a cute picture of me, but Kean, as always looks adorable.
He did great the entire trip and wanted to so badly be down on the floor rolling around.
Here's my 92 year old Grandmother and her remaining 8 daughters. My Aunt Karyn did not want an open casket for the public. We just had a family private viewing.
I'm pretty sure she'd come haunt me if I put a picture of her in the casket on this blog.
Either way, I wouldn't have. I think casket pictures shouldn't be for public consumption.
But I do want you to know, I came home from her funeral inspired and wanting to be a better person.
I love you Aunt Karyn