As I sit and watch Casey sleep, I know that somehow she is healing- Just way too hard to watch sometimes...
It might be hard for some of you to look at the pictures too...
(Maybe just close your eyes in~between sentences)?
.
.
.
.
Not sure how well the picture will turn out,
but see the red streaks forming above her PICC Line.
Red streaks ARE infection, aren't they?
.
..
.
.
The charge nurse told us last night that she would contact the on call surgeon and find out what is going on.
We have seen plenty of nurses since.
Just no damn doctor.
wth?
(And yes, I am plenty upset)!!!
Knowing too that Dr. Sutherland is to be called 24/7 with his patients updates.
.
.
?
.
.
Her tummy swelling big now.
And around her incision very hard.
.
.
?
.
.
.
.
Love to all.
XOXO
Me
We have seen plenty of nurses since.
Just no damn doctor.
wth?
(And yes, I am plenty upset)!!!
Knowing too that Dr. Sutherland is to be called 24/7 with his patients updates.
.
.
?
.
.
Her tummy swelling big now.
And around her incision very hard.
.
.
?
.
.
.
.
Her biliruben count is still up.
(hence the yellowish tinge).
But next to my brother Johns tan, she almost looks normal!
.
.
?
.??
.
.
..
How's that for an update?
(hence the yellowish tinge).
But next to my brother Johns tan, she almost looks normal!
.
.
?
John and his 'nephew' Casey
..??
.
.
..
How's that for an update?
Love to all.
XOXO
Me
OMG~a little shaken from seeing those. But, I know this is typical. She's healing and you just cannot rush that. Sending warm and fuzzy thoughts your way. Lots and lots of prayers for all of you....
ReplyDeleteAll my love,
Thers
xoxoxoxo
Has he been in yet? Can you call him? Maybe leave a message and tell him to get his arse over there? Will be waiting for an update!
ReplyDeleteOh and as of yesterday, 1/3rd of her liver does NOT have any blood flow... it seems to be clogged up by those silly Islet Cells.
ReplyDeleteGo figure...
The liver being regenerative? Now what?
Guess I shall ask the doctor as SOON AS I CAN FIND HER that is...
XOXO
Me
I thought these doctors today made daily visits....grrr
ReplyDeleteI'm gonna have to spork someone...
ReplyDeleteWill be sending up extra prayers. Why hasn't the doctor come in yet is my question? She/he should be right there if/when they get a call especially about something like those red streaks. Please keep us posted and try to get some rest when you can. You need rest too my friend.
ReplyDeleteLaughter's the best medicine...maybe you should show her the monkey butt again. Maybe that will make her laugh and feel a bit better. I hope the doctor gets there soon...
No Doctor? When was the last time you saw her? This is an outrage!! I know it's the Christmas season but I didnt know the Hippocratic Oath took a vacation !! Give her Hell for me too !!
ReplyDeleteAnd give Casey a hug !
oxoxo
I'm so sorry you all are going thru this..it always seems to get worse before getting better..Casey looks completely worn out and rest is much needed..Many prayers are always coming your way..God Bless you my friend xoxo
ReplyDeleteP.S..Doctors are pure hell when it comes to their patients sometimes..they totally rely on their nurses to communicate change in conditions..We have a heck of a time getting our Dr's to actually LOOK at the person..Nurses can only do too much..Where I work..if someone just doesn't look right I send them to the hospital..I'll probably lose my job someday over that, but wth..as long as my patient is safe.
ReplyDeleteHopefully you will see some progress soon. Even a stranger's wish for a speedy recovery has to be a tiny bit helpful. Take care.
ReplyDeleteYes, Anne, I have always thought that red streaks have indicated infection... You would think that this would worry the nurses but maybe they are thinking that since she is on so much medicine that it is nothing to worry about??? I know you and I know you will give them hell when you get mad enough...
ReplyDeleteCasey looks so darn tired. I know it is hard to get 'rest' in a hospital...
I'm sending prayers, warm filled thoughts and love filled hugs your way!
Love to ya both,
Slurkie
Hope this isn't a dumb question - but could the redness be from a sensitivity to the tape that held the dressing over her incisions? That's kinda the way it looks to me in the picture. At any rate..... I, for one will be praying harder!
ReplyDeleteWhere is that doctor?!? There could be all kinds of simple reasons for the streaks but then there is that one that we all know and tend to fear.
ReplyDeleteI know the healing won't be pretty. And incisions do occasionally harden and form keloids as they heal.
But WHERE is that doctor?!?
I'm sorry it hasn't been a good day for Casey. I'm pissed that her doctor seems to be ignoring her. If you keep asking for her doctor and continue to not hear from him/her I would be contacting the chief of staff or whoever is in charge of the doctors.
ReplyDeleteIncisions usually do begin to look even nastier about a week after surgery, it's all that dried blood under the skin. And hardness around the incision site is just scar tissue forming. Swelling, new redness, or heat coming from the incision site, are all red flags that somethings not right.
The streaks going up her arm almost look like scratches because I can't see where they actually go to the PICC Line, but it's hard to tell from just a picture. Here again, we need the doctor's opinion.
The liver has tremendous recuperative abilities, so considering what Casey's liver has been put through it probably will take some time to heal, and to accept all those new little islet cells. Her swollen tummy could be the result from her liver not functioning at 100%. People with liver problems tend to get very bloated looking around their stomachs.
I wish I could help, but I guess all I can do is to just keep worrying along with you Annie.
Now everybody try to get some sleep! Sleep is good.
I am no doctor and can't even imagine what I am looking at but she does look very weak as her body is working so hard to regroup. I am sorry it was not a good day...I will pray for encouraging news tomorrow.
ReplyDeletepoor little pincushion.
ReplyDeletei was thinking the red marks might be where tape had been removed. I get those (but am allergic to tape/latex). The rest, I can't help but wonder if the doctor isn't alarmed enought o come running perhaps it is normal>??!?!?!?
But still you would think someone would come say something,
HUGS, love and prayers still coming your way.
Sweet Thers;
ReplyDeleteI apologize that I didn't think to put a better warning on the blog. Perhaps I should have.
Around about 4-ish the nurses started coming in for 'vitals' etc etc etc...
Shortly after, 2 of the surgeons came in. One of them was Dr. Sutherlands top doctor. (Think maybe I finally made enough noise)?
After examining Casey, he did say they might have overcorrected with the heparins and that they would back off of those for a while and see how she does.
But then her blood is 'thick' already...
6 of one kind, half a dozen of the other as they say.
Warm and fuzzy sounds good- Was just out with Punk and that wind is mighty damn freezin'.
XOXO
Me
ReplyDeleteSweet GG;
They finally came a full 21 hours after we asked...
XOXO
Me
ReplyDeleteNot too sure WHY the daily visit was so delayed either...
ReplyDeletehehehe
Make sure you bring sporks that work in nasty windchills...
Being young and innocent, what's a spork?
ReplyDeleteIt actually sounds fun.
I'm still in prayer my friend, wish I could do more for you.
Sweet Pam;
ReplyDeleteYou made me laugh too- with your idea...
So I told her if she didn't think she could smile that she had to look.
Then I opened the card.
It worked!
They are not real concerned about her streaks either... I think John has a picture from when it all began yesterday- The streaks and the tummy. That's why he could figure how fast it was spreading etc... (Well at least he was looking at his phone when he said it had tripled in size).
Maybe he'd gotten a call... Not sure.
XOXO
Me
Sweet Bug;
ReplyDeleteYesterday they said she was in surgery-
Then they said she'd be up "in a little while"
Today they said she had other patients to see first.
And then we were back to hearing that she was in surgery.
etc
etc
etc
Just depended whom one spoke to which story you got...
But then when 2 doctors showed up, it really makes me wonder where the hell the other had been hiding???
XOXO
Me
ReplyDeleteSweet Beth;
I do know that it is always darkest just before the dawn. And so it goes with anything that heals.
Just hard not to know if they even GOT the message to begin with; although I do have a tendency to believe the nurses and the charge nurse too...
XOXO
Me
hehehe
ReplyDeleteWhat would you do if you worked AT the hospital and STILL couldn't get a doctor to take a look?
Just curious...
Still giggling...
ReplyDeleteThank you Sweetie!
And yes, every little bit surely helps!
XOXO
Me
Sweet SlurkieBaby!
ReplyDeleteEvery time another nurse came in and looked at Caseys arm and tummy, I actually felt the need to explain that we were not upset with THEM. But had to ask where the hell the doctor was...
Thus far, compared to a few other experiences that we have had with nurses, the staff here has been wonderful.
I chuckled at your saying it is hard to get rest in the hospital.
The one nurse today even noted Caseys complaint on that same matter- That she was interrupted all night long by pokes and b/p readings, temps etc.
The nurse said that when she is in stable condition they will stop bugging her.
(hehehe Did I just put the word 'stable' when mentioning Casey)???
XOXO
Me
Sweet SIC;
ReplyDeleteIt could well be from tape, but there was never any tape on her upper arm until they put the PICC Line in. And then they used the Tagaderm. It is the only tape her body will handle without breaking out in hives.
And yes, even with her allergies plainly written on her wristbands, they STILL try to use the paper or other tapes...
I remind them if Casey doesn't catch it right away.
Oh, and they did say that maybe someone had left a blood pressure cuff on her arm.
Um..
Nope.
Didn't happen.
But on Friday night, her temperature did spike twice to over 100.
They do not know why.
XOXO
Me
My Mom complained about the same thing... She would say, "Just as soon as I doze off and start sleeping good, they come in here and poke around on me!"
ReplyDeleteI've always thought they have an uncanny knack of knowing just when you get to a good part in a dream... LOL...
So... I know it's late there... WHY aren't YOU resting???
OK Sweet PeachieBaby,
ReplyDeleteI shall have to go check the medical dictionary, but I don't know what a keloid is.
Whatever though, and knowing that you spent many years working for a doctor, I shall take your word for it.
hehehe
See above comments for where the doctors were hiding.
Oh no, WAIT... don't do that because we never really did get an explanation...
sigh.
XOXO
Me
Sweet RT;
ReplyDeleteI still get a kick out of you worrying for me so I don't have to.
Oh would that it would work!
The streaks are under the skin and not scratched on the surface...
I will wait to see how everything goes through the weekend... But I do know that when it comes to possibly file a complaint i will begin by going to Ann Marie. She is Dr. Sutherlands personal assistant- and what he may need to know will get to him faster through herself.
(Casey has her on speed dial by the way).
How come with all of my surgeries etc that I never saw the yuck part a week or so into the healing process?
...Or maybe I just didn't think about it...
XOXO
Me
Sweet BethieBaby,
ReplyDeleteAw... I'm no doctor either, but I do know how hard she is trying to get well(er) too.
And still she walks with such a purpose too- And tells me to keep up.
She has those two IV poles.
I take one of them and then worry about all those lines that try to drag between us, and try not to run them over.
But I swear that she will be running other patients over too.
hehehe
XOXO
Me
PS
So far she has NOT run over anyone else...
I have a consult call out to all my doctor friends including one who is there at u minn. She has been in emergency with her kid all day but will look asap. The others are in a variety of fields (neurosurgery to Gyno) and none have seen/done but all are asking around for you.
ReplyDeleteSweet Pea;
ReplyDeleteNo tape there.
Casey is allergic to all the tape too. And there are still those nurses that say "no one is allergic to paper tape".
I tell them "go ahead, put it on her; and when she breaks out in hives from it, THEN tell me that she's not allergic."
I just got your message on my cell...
And now have replied to your email too.
XOXO
Me
i am not allergic to paper tape. Just the dnag adhesive on it. ANYONE with a latex allergy is... piffle. They don't know what they are talking about. Ask Jane even she has mentioned it.
ReplyDeleteANY bandaid including the ones with no tape make me break out in hives, horrible hives.
Sorry I spammed you with the message, I wasn't sure what you were checking and wanted you to know I was asking around.
It hurts me to see her condition. I can only bet the damn doctor would come running if it were her daughter in the same condition. I'm praying for you and yours honey and i know she will be on the mend soon! All my love and lots sa hugs too!
ReplyDeleteThese, my good man, are sporks...
ReplyDelete~
~ hehehe
~
~
XOXO
Me
PS I am young and innocent too.
hehehe
ReplyDeleteSorry about that Mom.
I rested earlier... Til Casey called about 10-ish.
XOXO
Me
Pea;
ReplyDeleteI was just replying to your comment when my phone beeped.
Maybe just show them the pictures?
I believe you can steal them if need be.
Spoke to casey a bit ago- They had to do a EKG because she was having chest pains. Another xray too.
The kid will glow in the dark shortly...
She said her EKG turned out well.
XOXO
Me
ReplyDeleteThey must use different adhesive on the Tagaderm because she is alright with that stuff.
Bandaids do the very same to her too.
And do not worry about the spamming- I do that too.
And I do it under the pretext of better to be safe than sorry.
hehehe
And here is a big (((HUG))) for your special efforts on your kid sisters behalf
XOXO
Mama D.
Sweet Bobbie;
ReplyDeleteIt pains me to see her like that too.
And am remembering now how mama would say "I love you so much it hurts sometimes"
I know exactly what she meant now- And not only how it pertains to Casey, but to all of my daughters as well.
Took me the better part of 50 years to 'see' what she meant.
XOXO
Me
maybe SHE is not allergic to tagaderm... that stuff raised hives that three years later I still have scars from....
ReplyDeleteThanks fo the hugs.. still looking for help.. brb
And for everyone who is as upset as I am- who is offering their thoughts and prayers here, my deepest thanks to ALL of you.
ReplyDeleteHugs.
Love.
Prayers.
With a few hehehe's throw in too
I couldn't have dreamed that starting a silly blog 3 years ago would have made for meeting and knowing some of the nicest people in the world!
My love to you all.
XOXO
Anne
Spork pics stolen from here
ReplyDeletehttp://images.search.yahoo.com/search/images;_ylt=A0geu8KrEldJkDUB9MxXNyoA?ei=UTF-8&p=spork&fr2=tab-web&fr=moz2
From Splat in my inbox...
ReplyDelete"Keloid is when a scar gets hard and shiny. Like one that gets stressed during stitches and sort of spreads out. THAT is not a keloid.
If the doctor overdid the heparin....that could cause heart palpitations or pain. am assuming that she doesn't have any blood in her urine?"
_________________________
About the blood in her urine-
Wouldn't know.
It is dark but she also is doing her post op bleeding too.
It has been dark since her surgery...
XOXO
Me
We're your on-line family!
ReplyDeleteWhoda thunk that you'd have met us CrAzY people???
hehehe
Here's a cup of cocoa and a plate full of cookies to munch on...
Sending HUGS to ya!
Saving these here... toegther for comparison
ReplyDelete~ From December 21, 2008
~
~From December 27, 2008
~
~
that is probably different. When my bilirubin goes up, my urine gets darker.
ReplyDeleteOf course MINE doesn't go as high as hers likely is.... but the bilrubin levels are the cause of that urine color almost certainly.
They say that when levels are very high the urine turns a dark amber and that IS the bilirubin being excreted.
I double checled myself here:
http://en.wikipedia.org/wiki/Bilirubin
way more than you ever needed to know but....
Bilrubin for those of us who are diabetic is an indicator of liver function. When your sugar bounces around all over it makes your bilirubin levels change and tells your doctor if you are fibbing about your blood sugars.
on the plus side, I hear that high bilirubin makes islet cells implant better in the liver so that is good news.
OMG Thank you
ReplyDeleteThat IS good news!
XOXO
Me
Heading to Wiki now...
ReplyDeleteWhy on earth would anyone lie about this stuff?
Too important to do that...
you would be surprised how many diabetics do. not to name any names BOBMO but they eat things they shouldn't then tell their doc they don't to avoid the lecture.
ReplyDeletecan't hide the bilirubin.
on the islet/bilrubin
ReplyDeletehttp://endo.endojournals.org/cgi/content/abstract/en.2005-0632v1
sorry it is in medical-ese.
Splat-
ReplyDeleteI don't mind the medical-ese-
I just read slower then.
XOXO
Me
Here is the updated version:
Stolen from here:
http://endo.endojournals.org/cgi/content/abstract/147/2/762
------------------------------------------------------------------------------------------
Endocrinology, doi:10.1210/en.2005-0632
This Article
* Islet Cell Transplantation
Endocrinology Vol. 147, No. 2 762-768
Copyright © 2006 by The Endocrine Society
Bilirubin Can Induce Tolerance to Islet Allografts
Hongjun Wang, Soo Sun Lee, Carlotta Dell’Agnello, Vaja Tchipashvili, Joanna D’Avilla, Eva Czismadia, Beek Yoke Chin and Fritz H. Bach
Department of Surgery, Beth Israel Deaconess Medical Center (H.W., S.S.L., J.D., E.C., B.Y.C., F.H.B.) and Joslin Diabetes Center (V.T.), Harvard Medical School, Boston, Massachusetts 02215; and Department of Experimental Medicine and Biotechnology (C.D.), University of Milano-Bicocca, 20052 Monza-Milano, Italy
Address all correspondence and requests for reprints to: Hongjun Wang, Beth Israel Deaconess Medical Center, Harvard Medical School, 99 Brookline Avenue, Boston, Massachusetts 02215. E-mail: hwang3@bidmc.harvard.edu.
Induction of heme oxygenase-1 (HO-1) expression in recipients of allogeneic islets can lead to long-term survival (>100 d) of those islets.
We tested whether administration of bilirubin would substitute for the beneficial effects of HO-1 expression in islet transplantation.
Administering bilirubin to the recipient (B6AF1) or incubating islets in a bilirubin-containing solution ex vivo led to long-term survival of allogeneic islets in a significant percentage of cases.
In addition, administering bilirubin to only the donor frequently led to long-term survival of DBA/2 islets in B6AF1 recipients and significantly prolonged graft survival of BALB/c islets in C57BL/6 recipients.
Donor treatment with bilirubin up-regulated mRNA expression of protective genes such as HO-1 and bcl-2 and suppressed proinflammatory and proapoptotic genes including monocyte chemoattractant protein-1 and caspase-3 and -8 in the islet grafts before transplantation.
Furthermore, treatment of only the donor suppressed the expression of proinflammatory cytokines including TNF-{alpha}, inducible nitric oxide synthase, monocyte chemoattractant protein-1, and other proapoptotic and proinflammatory genes normally seen in the islets after transplantation.
Donor treatment also reduced the number of macrophages that infiltrated the islet grafts in the recipients.
Preincubation of ßTC3 cells with bilirubin also protected the cells from lipid peroxidation.
Our data suggests that the potent antioxidant and antiinflammatory actions of bilirubin may contribute to islet survival.
------------------------------------------------------------------------------------------
I am thinking then that since she IS her own living donor this really IS a good thing.
Thank You Pea.
XOXO
Me
You are welcome.
ReplyDeleteIn addition to being a damn fine neurosurgeon (and no i won't let him look at my aliens) my friend is a gamer. I know Casey and Greg will get a kick out this (posted on my facebook page)
DeeAnne says: All Hail Mike for the +5 wand of Mommy Calming. Thanks!
and he says:
ReplyDeleteSend Casey my best wishes for a speedy recovery.
Will keep both Casey & you in our thoughts and prayers, Anne. I hope the doctors have done what needed to get done by now. And hope Casey has a speedy recovery. You take good care too! Big hugs!
ReplyDeleteSending monkeybutt and sporks to Xpancreatic kid... love and prayers daily to you both..
ReplyDeleteant k
Cant lie to the doctor about the sugar.. too many tests he can do that tattle! hehe
ReplyDeleteAgain, I vote with those who say diabetics shouldn't lie. Take care of yourself or look at a treatment plan that lets you live life the way you want to. I have an uncle who is fighting going on insulin, for years now, and failing horribly, but won't consider the appropriate treatment, but keeps cheating on his diet. I am telling him over and over, do the insulin, take care of yourself and do some compromises that you can live with. Living the way he is only leads to death. I have a kiddo who lives with it to prove it. So, don't cheat on your diabetes, live with it and work with it, have a life you can live with, but don't pretend it isn't there and court death.
ReplyDeleteMany many prayers be said sweet Anne and Casey
ReplyDeleteHi Anne, thanks for the update. I have been talking to Kelli through out the day yesterday. all is well now? I just can't believe you have to sit in MN all by yourself and go through this. I sure wish I was rich so I could stay with you. Please send you blog invite to AFdazzle@aol.com. This is Jean our friend, she use to be a ER nurse in Madison and has been praying with us on Casey health. She is amazed that this surgery even exist!. Keep in touch, Michelle XOXO
ReplyDeleteLooks amazingly painful! And I thought my C section scar was bad!!!
ReplyDeleteLove and hugs to you both xxxx
With what Casey has gone through, my ardent prayers for her speedy recovery!
ReplyDeleteLove to you both,,,God Bless!