Good Day After Christmas! And Happy Boxing Day to my Canadian Friends!
Hope your Christmas was 'wunnaful' in every way.
As one of Santa's elves, I had to sneak up to the hospital very early and deliver a few things for the pancreatic kid.
(Or would she be the NON~pancreatic kid now)? Hmmm ?
hehehe
So sneak I did- Even going in the back way to her floor just in case her door was open and she was awake.
She was asleep.
And so her little gifts from Father Christmas were placed under her little tree. This tree, an added little bit of Christmas, sent by Sweet BethieBaby.
(Casey's one nurse -Sean- said she could keep that little tree as long as she had no roomies). Furthermore, the rootball is completely wrapped in plastic, which has been undisturbed since it was delivered. I shall worry about watering it when I get that tree back here. Sorry, but I would rather sacrifice the tree instead of compromising the child...
Not sure if you have seen the pics I had added to my last blog.
If not, here are a few.
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First, one does need more 'festive' dressings.
And we each had our Santa hats too;
Although she couldn't wear hers for long- Too hot...
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Then of course, one needs a bushel of presents!
hehehe
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And a bunch of cards too!
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Even Miss Punk got a new pull toy.
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She LOVED it!
hehehe
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And was very very thankful to Santa Paws
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She still loves her now unstuffed SpongeBob
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& makes it her daily plan to wake me in the "wee~wee~hours" to go outside,
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As soon as we get back inside,
She steals my nice warm spot in the bed!
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Pretending to be SO innocent!
hehehe
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And we each had our Santa hats too;
Although she couldn't wear hers for long- Too hot...
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Then of course, one needs a bushel of presents!
hehehe
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And a bunch of cards too!
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(Desperate times calling for desperate measures, and outlets being at a premium, I stole that little table from her invisible roomie)! hehehe
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Even Miss Punk got a new pull toy.
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She LOVED it!
hehehe
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And was very very thankful to Santa Paws
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She still loves her now unstuffed SpongeBob
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.
.
.
.
.
& makes it her daily plan to wake me in the "wee~wee~hours" to go outside,
.
As soon as we get back inside,
She steals my nice warm spot in the bed!
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Pretending to be SO innocent!
hehehe
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Speaking of 'spots';
Casey found a bit of a damp spot near to her central line.
It was leaking.
.Casey found a bit of a damp spot near to her central line.
It was leaking.
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The nurse had never seen any central lines that did this- She changed the dressing, and inspected Casey's sutures. All seemed well enough, but she needed to check with her doctor too. He said it was really not a problem, that sometimes the central line will be a bit sluggish etc etc etc. And not to worry about it.
I came back to the hotel a little after noon to catch up on some sleep. (I had been awake since 9:30pm on Christmas Eve). But couldn't even rest.
At about 3, I had the worst feeling that something wasn't right. knowing that my intuition has never failed me, I took Punk outside, and went straight back up to the hospital. The cardio lab had just finished putting a PICC Line in Caseys arn. So now, instead of the central line (which cardiology was not able to remove), she will be using the PICC Line. Her nurse was going to remove the central line in short order then. Certainly this was not catastrophic, but still I just knew something hadn't been "right" either.
Casey's blood won't thin down- Since her TP/AIT Transplant, she is on a 24 hour bag of Heparin, plus gets Coumadin every day too. She is now also on aspirin therapy as well. Darn stubborn blood...
Her nurse never did come back. And since I haven't heard anything to the contrary, I am thinking that the central line did get removed last night after I had left.
Casey has tummy pains- and hasn't really eaten much since her surgery; yet she is very nauseated most of the time. One of her 24/7 drips is the Protonics for the heartburn etc. And she gets Zofran? and/or Phenergan for breakthrough nausea. Another bag was added, Compazine to help with the nausea too.
She has just called- Awake now, and in awful pain. I am headed over there right now.
Love to all.
XOXO
Anne
PS... Not sure why I found this so funny earlier.
My Saved Locations
Green Bay, WI 
View: extended forecast and map
______________
Now THAT'S a really boring forecast!
The severe weather alert?
Seems as though every day brings yet another severe weather alert.
Ya think?
It's WINTER you fools! Learn how to drive or stay off the roads.
My proposal is this.
How about ixnaying ALL of the severe weather bulletins?
(They have all read the very same for Minneapolis too).
And how about, instead, just post a GREAT WEATHER Bulletin???
Have a good one!
View: extended forecast and map
______________
Now THAT'S a really boring forecast!
The severe weather alert?
Seems as though every day brings yet another severe weather alert.
- For snow and ice-
- or ice and snow.
- Or for ice on the roads,
- or for snow on the roads,
- sometimes there is ice under the snow on the roads...
- Add a bit of a breeze and there is blowing and drifting too.
Ya think?
It's WINTER you fools! Learn how to drive or stay off the roads.
My proposal is this.
How about ixnaying ALL of the severe weather bulletins?
(They have all read the very same for Minneapolis too).
And how about, instead, just post a GREAT WEATHER Bulletin???
Have a good one!
First of all, I am now at the hospital, she has pain mostly from her colon now.
ReplyDeleteFor SOME reason, Multiply would not allow me to post this blog earlier...
That and my blogs will not allow my friends etc to even READ my entries; nor do they show up in your inboxes.
If anyone knows why or how this is happening, please let me know.
Thank you
XOXO
Me
I'm reading your blog now and all seems OK. Got the email one also. Thanks it was funny and sometimes to real, which made it even funnier. Casey's looking good and still praying for her daily. Don't forget to take care of yourself.
ReplyDeleteI'm sorry to hear that Casey is having to deal with more pain, I was hopeful that she would be getting a break from that since her surgery. When you think about what her body must be going through, trying to function with a new pancreas and all, it's nothing short of amazing.
ReplyDeleteIs Casey still on a liquid diet? I have a feeling her tummy and colon will start to feel better once she starts back on at least a soft diet. Any chance of her getting to eat some plain yogurt? That would put some good bacteria in her stomach, and might help.
Her blood not wanting to thin out seems odd, even with all the medication. What's causing that Annie?
How has her red blood cell count been since her transfusion?
You said her doctor went on vacation after her surgery, when will he be back? Even though he's out of town is he still checking on her progress?
My, don't I have a lot of questions? (Oops, there's another one!) It's just that I've been thinking about Casey so much this past week that I end up having lots of questions, and I wait for each new update from you, and then I have more questions.
I know she's in good hands. I'm just helping you worry so you don't have to do it as much. (That made sense to me - really!)
Hugs
Maybe Multiply was doing an update? I dunno but it seems lots of people have been having issues lately...
ReplyDeleteIs Casey having nausea/pain/troubles with her tummy and colon because she hasn't had anything to eat?? Or is it from the medications?? Would being able to eat something help it or make it worse??
No clue as to why her blood isn't thinning out... Almost positive that isn't normal, right?? Maybe from all the meds she is on?
I may have to do some research and see what I can find... Will let you know...
Did Punkie ever get to go see Casey?? I bet that would brighten her day so much...
Try to get some rest... I know that is much easier said than done...
If you need anything, I'm here for ya!
Sending LOTS of positive thoughts and love filled hugs to you & Casey!
Love Ya's!
Slurkie
Love those Christmas PJ's! Glad she got to have a little bit of Christmas there.
ReplyDeleteHer blood not wanting to thin worries me a bit. And many times those meds will cause her to have stomach pain. Especially those being give by mouth. It also can take several days for those Anesthesia meds to clear out of your system. She was under anesthesia for many many hours. Those things in your system alone can cause that nausea.
Is it just me, or does Punk even look a little puffy eyed and sad? She looks like how I look when my sinuses swell up from sleeping on my stomach because of my back pains. That face in the pillow look....I know it well!
*hugs*
ReplyDeletepain killers do nasty things to our insides and if she is not eating on top of anesthesia....
ick.
Glad to see she is having a good Christmas...She certainly does deserve a break
ReplyDeleteHugs
beepluvsrock.com
I hope all is well with both you and Casey. Hugs
ReplyDeleteSorry to hear shes feeling yucky. Bit I agree with the painkiller/not eating theory.
ReplyDeletePunk looked so cute with her new toy.
Get some rest if you can & I'll stop by later.
Love to all
oxxo
Mr. KhoolMan;
ReplyDeleteNah... Really I am alright -
Casey is quite yellow, due to her bilirubin counts. But she even looks good with such a weird tan.
hehehe
She is sleeping right now.. We are waiting for her doctor to come take a peek at some red streaks by her PICC Line, and to see how much her bruising has spread.
My brother John was here all afternoon, and said her bruising on her tummy actually tripled in 4 hours.
So now we wait to hear something once more.
Thank you for your prayers as always.
XOXO
Me
Sweet RT;
ReplyDeleteBut she doesn't have a new pancreas. She has NO pancreas anymore.
But it is still a huge change from before.
They removed her pancreas, and took the islet cells from it, transplanting those to her liver where, HOPEFULLY they will take hold and produce insulin once again so she doesn't have to be insulin dependent forever.
As far as her diet goes, it is more/less just soft foods for now. Yogurt is not a good food for chronic pancreatitis patients. (It is very good for most people though).
With CP, the probiotics are responsible for creating bowel ischemia- And that can be very dangerous. Not sure WHY this happens.
AND I AM ALSO NOT SURE WHY MY COMMENT KEEPS GETTING EATEN HERE EITHER???
I am getting VERY impatient with Multiply of late.
I will have to finish commenting as soon as I get back at the hotel.
XOXO
Me
Miss Casey is looking very well. Glad to see that. Hopefully soon she'll get to eat something a bit more substantial. Maybe that will help.
ReplyDeleteWhat a wonderful little Christmas tree and so many nice things under it too. I see our card arrived as well. I hope it put a smile on her face.
Keeping all in my prayers. Keep us posted on how things are progressing.
How sweet of you to give Casey such a special Christmas!!!..Much love and prayers to you both xoxo..P.S..Miss Punk looks so content with her rope:)
ReplyDeleteOk I am back...
ReplyDeleteHer RBC is just a bit low- at 11.3
I know Dr wants it be remaining above 11 though.
He is in Miami- But available 24/7 by phone or by email. I believe he will be gone a week. Not sure though-
Not only has the trauma been to her pancreas and spleen, (both removed now), but transplanting the Islet Cells also is a bit traumatic for her liver too...
I do not know about the blood not thinning- Probably something to do with the liver- And perhaps the TPN- They are keeping a close eye on this for her, adding more heparin to her TPN.
(The TPN, the yellow bag, contains all of her nutrients).
Keep worrying Sweet Deb, it helps (me) to know that my friends feel my confusion.
XOXO
Me
Sweet SlurkieBaby!
ReplyDeleteShe has had stuff to eat- a bit of jello here and there- a bit of pudding- a wee bit of oatmeal this morning before the nausea took over bigtime.
While you do your 'research' maybe check into the TPN too. While I know she needs it to live, I suspect there is much more sugar in that formula than what is right for a diabetic patient. (Gut feeling there).
I have not yet brought Punk up to the hospital. (But I will give her a bit of dramamine to calm her a bit beforehand). hehehe
I was going to wait until some of Caseys "lines" were gone, but now they tell me the PICC Line doesn't come out until she is ready to be discharged. So waiting is silly.
I sleep a few hours at a time- Hmm kinda like Casey!
Christmas Eve was nuts though- I got 2 and a half hours of sleep and was 'up' at 9:30 until 8 last night. (Yes, I 'napped'- and quite soundly, for 3 hours this afternoon).
XOXO
Me
I have just returned from spending the day with family. I am hoping by now all the 'line' issues are rectified. Glad the little Christmas tree is still allowed to stay and shine some christmas colors about :)
ReplyDeleteWill check back tomorrow, I am so tired from stormy traveling today.
Sweet PeachieBaby!
ReplyDeleteThe old hospital gown just wasn't right for Christmastime!
hehehe
Casey really doesn't get any meds by mouth, save a baby aspirin and of course always her digestive enzymes. For almost 3 years now, she takes those before any food enters her mouth, and now, sans pancreas, she will always need to eat those first.
Everything else is IV dispensed.
It is too bad that someone, somewhere, scientist or otherwise, has not yet come up with a painkiller that DOESN'T constipate a body; especially when that same body canNOT eat. All narcotics, no matter what class they fall into, are of a constipating nature. It astounds me that this issue hasn't been resolved by someone. (Like 50 years ago already)...
Punk IS sad. (Unless she gets a new toy). hehehe
Long time already away from her Mama Milly, her home, (and her Casey too). I try to use the pronoun "she" when I am on the phone and talking about Casey.
That face in the pillow- That was Punkie praying that I wasn't going to make her move.
hehehe
XOXO
Me
Sweet Splat!
ReplyDelete"ICK" is probably the very best word for it too!
XOXO
Me
ReplyDeleteSweet Beep!
I do believe she DID have a nice Christmas at that! (Even with the UNsurgery for the PICC Line and to remove the central line then too).
The break will come at discharge, (and I know it is premature to even think about that)... But the bestest break of all will come when her Islet Cells kick in!
XOXO
Me
RockLuvsBeep.com
ReplyDeleteWe are hanging in there Sweet Sophie!
Of course there have been days that I do believe Casey hangs in there much better than I do!
XOXO
Me
Sweet Bug!
ReplyDeleteThere! "Yucky" is also a good word! hehehe
I am tired even with that nap- so will be shutting this down shortly... Punk is already asleep on the floor in front of the window- (yes, it is open a bit). But the temps said 41 in my car! And we could walk outside without having our nose hairs freeze too!
Then came the misting rain which will surely freeze overnight.
XOXO
Me
Sweet Pam!
ReplyDeleteYes, your card made it on time for Christmas!
A smile on her face??? It made her laugh out loud. (Me too)!
Very cute. Thank you so much!
I shall post in the morning. After I 'nap' a bit more.
XOXO
Me
Sweet WyckieBaby!
ReplyDeletehehehe Twas the best I could offer under the limiting circumstances, but Christmas morning sure didn't turn out bad at all.
Now do you know of any correlations between her blood not thinning and all those meds?
Just picking your brain is all...
XOXO
Me
ReplyDeleteSweet BethieBaby!
We thank you again for the little tree!
I am glad you got to go visit- and hopefully to see your mom too. How is she doing?
I know how hard it must be to even try to blog with 3 kids and the Holidaze upon you. But please keep us updated when you can.
YOU get some sleep!
(Boy that feels good to say that)...
XOXO
Me
ReplyDeleteNighty~Night all.
And to thank everyone for their continued thoughts and prayers and wishes and hopes.
Love to all.
XOXO
Me
well as long as she doesn't have fish guts, in which case it would be Ich.
ReplyDeleteLove
Splat
XOXXOXOOx
Hugs and well wishes to you and your family.. Hopefully things will start moving up. Sheila
ReplyDeleteI'm glad you both got a good laugh out of it. I actually had a choice of two to send but that was the one Cee chose. She thought it was funny. Glad I was able to make ya laugh.
ReplyDeleteTake care and will continue to pray for you all!!
Casey looks so festive in her jammies.They are too cute.I dont think there is anything more comforting than a new pair of jammies or new socks.The simpliest things are the biggest,Im so glad Casey has had some comfort this Holiday. I continue to pray for her and you.
ReplyDeleteHi Dear Anna and Casey,
ReplyDeleteI am following all of this so closely, for several reasons as you know, beyond that we love you both! Please, please remember, that you have resources of folks who live with type 1 diabetes and have for years with medically fragile (and now pubescent) child. Basically, Casey, for the time being is a type 1 diabetic, until she starts making some insulin! I remember what it was like trying to figure it all out. and the new treatment protocols (we have been on them for years now) allow a lot more flexibility for foods - in fact, as long as you learn to do the sliding scale insulin Casey can eat as much sugar as her heart desires. We would love to work through it with you and help you understand what is going on from that end. As we watch others with various diseases, I have seen my brave 11 year old tell me repeatedly "I'll take diabetes over that.". Now, on the other hand, snow and fun outside play in the snow tend to send her into unreasonable blood sugar plummets that we cannot explain - so last night she sat in our room sipping on juice, having some slower carbs and checking sugars for about an hour - guess she and her brothers and sister had a blast building snowmen and snowforts - all good things, but then we just watch and react. What initially after her diagnosis seemed so confusing and overwhelming really has become second nature - all of us can count carbs really accurately by just looking at things!!! Tell Casey that you even do get used to the shots, Kiley says to tell her. And if things don't improve, I would highly recommend an insulin pump - they are amazing and really get Kiley close to what a "typical" body would do.
Anyway, my point is: get together with folks who live with this. It seems overwhelming (and for you guys hopefully temporary), and it is, but it really is even and improvement over her horrible pancreatitis attacks, if she is left with diabetes. Diabetes is something your brave girl can do, if she really has to. And you know, the research is out there that those cells can get to work! I have been watching the research for years, hoping that someday there will be a true cure for my darling girl - but in the meantime, we do the best we can, stay on top of it, and enjoy life. There truly are worse things that diabetes, though maybe that is our mental survival techniques. And tell Casey that she will need to keep fast sugars on hand - CANDYYYYY!!! LOL! I cannot tell you the hilarity when Kiley is fed candy because she NEEDS it!!! LOL! There could be worse things.
Really, we know so many of the tricks, the things that make it easier, more fun ways to deal with it (yeah, I know they have those glucose tablets - they taste bad and have less sugar than better tasting candy, when you actually need more of the sugar - and candy is cheaper, and you can pick your favorite, though not chocolate - that is a slower sugar). Again, we can explain a lot and make it make sense. Our endocrinologist has Kiley tagged to be a diabetes educator, and because we aren't "professionals" we can use regular language about it! So, we would love to bring dinner and tell you what we know and help what you know make sense! I know diabetes sounds overwhelming, and it is (and for Casey, hopefully temporary), but it is something you can live well with. Hopefully much better than all she has been through before!
Love to you all!
Christy
Well I feel terribly stupid... all this time I thought Casey's surgery was for a pancreas transplant!
ReplyDeleteSweet RT;
ReplyDeleteYou have absolutely NO reason to feel stupid. If she'd had her appendix out and you thought that she was getting it replaced I might have thought you had too much eggnog; but given the rarity of the TP/AIT Transplant, you really and truly have nothing to worry about.
XOXO
Me
No need to feel stupid. this is a radical and new procedure.
ReplyDeleteThey DO take out her pancreas then they isolate the healthy islet cells from her own pancreas and implant THOSE into her liver where hopefully they take root and grow so that she can produce her own insulin.
so it is a transplant but she still is left with no pancreas.
((((((Anne)))))) Many many prayers and healing thoughts for you and sweet Casey always....
ReplyDelete