GeekBlog
Friday, January 23, 2009
I had a Dream...
I had a dream recently...
I don't dream often these days...
Early in december I had 3 or 4 dreams, all of which I have noted down for use as story ideas...
Last night I had a Dream about Kim...
I had a dream like this once before...
Like previously, Kim wasn't dead (of course), but it was just a hospital mistake.. She was alive and well...
But unlike last time where she came home and was happy....
This time in the dream, she was still in the hospital, and still sick...
But she was aware, and awake, and wanting to come home....
And still alive....
I know whenever I post that I feel like I failed Kim, people get upset....
But sometimes I can't help it and that's how I feel...
I feel like I should have been able to do something....
I feel like I should have insisted she be allowed to come home....
I Love her, and I Miss her....
And I do somtimes feel like I failed her...
But I don't belive that she feels that way....
I Feel that she is mostly happy where she is....
I say mostly because she doesn't have me or Bill...
But she does have her loving parents....
And Pepper.... She really missed Pepper.... And Pepper missed her....
Just Like I miss her now... And Penny Misses her... And Bill Misses her... And Cat... Well you get the idea....
I don't know how to hold it in sometimes... I don't know what to do....
Sometimes I feel like she is being my muse....
Because my writing is not worth anything without Kim....
But somtimes, I get these ideas, or these spurts of energy and I just want to say "Hi Kim, and Thank you!"
I love her so much and I hope she knows this.
I'm sure everyone will tell me "She does"... But sometimes it's just hard to belive that for yourself...
N-E-Ways, it's past 4am in the morning and I need to go-2-bed...
I have some crying to do....
-P/KAF/The one with the puddles shoring out the keyboard....
Labels: Dreams, Failure, Kimberly Elizabeth Fox, KimEM, Life After Death, Muse, Stuff, Writing
Wednesday, June 04, 2008
Kim, more Kim, and almost nothing but Kim so help me Kim
As I sit here, waiting for word, from pickles for me to come get him...
I thought i'd update people whith what I knoe from last night.
To kep Kim's blood preassure up high enough to weather the 24/7 dialysis, the have to pump her full of dopamine, milrinone, argatroban, and other medcines...
The problem is they are giving her MORE fluids than they are able to ake off.
The reason being, everytime the up the therapy on the dialysis to remove more fluids, her preassure drops, which means higher dose of dopamine....
On the good side of things....
Kim's back.
She's not happy at the state of things but she's not mad @ me or Pickles
She's awake, fully cognative, and even trying to crack a joke here and there... which is hard over the sound of the BiPaP mask thingy...
N-E-Ways, I wll try and keep everyone up to dates as best I can.
-Piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Monday, June 02, 2008
Course of treatment, Part 1
Just an FYI....
Pickles and I have an apointment with Kim's doctors @ UPenn to discuss the corse of treatment....
Fingers Crosed
-Piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Updates and latenight consent....
Sorry about the lack of blog updates, but i've been spending time in the chatroms again and relaying information through there..
Kim's stll n and out mentally and has been really tred a lot....
She's back on the 24/7 Dalysis because when they tried the every other day kind her blood preassure and temp were too low and they weren't actually able to remove any fluid...
As a side affect of the new round of dialysis they thnk they know why the mental confusion.
They send some blood work to the lab and found the acid levels in her blood are too high.
So they are going to put her on a mask to boost the oxygen levels in her lungs and hopefully reduce the acid levels.
Well the reason I know of this development at 1:15am my tme is that inorder to make sure the mask is helping (the next step being intibation) they need to put in an arterial catheter in her wrist, or just do needle pricks every 15mins or so.
The arterial catheter has a lot of positive sides to it, lke being able to measure diferent preassures, but also has one bad side. They need to immobilze her arm so that she can't pull it out accdentally.
I've asked them to put the arteral catheter n her left arm as that's the arm where her pic line is, but just remembered she's left handed..
She's ggonna be mad at me again when she wakes up :(
oh well... I've done a decent bit of writng last couple days.... mybee it'll be redy to post in couple weeks.
-HuGgLeS-
-Scared One
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Consent, Dialysis, kim, Power of Attorney, Stuff, UPenn
Thursday, May 29, 2008
The fog that is rhenal failure.....
Just a little middle of the night update from me....
As it stands now, Kim is still in a standard sinus rhythm. Her blood preassure is good for her but a little low from 'normal' and her heart rate is good.
She was off the Dialysis today for a couple hours.... They needed to prep her for and then take her to the cath lab for tests...
Shortly before she went back on, she started to really fade mentally..
That's an extremely scary thing to watch....
Either tomorrow or Friday I get to play MULE and pickup the cd's of Kim's CT scans and Ultrasounds and take them to UPenn... I'm more than happy to do it even if it means about 130-150 miles of driving round trip when all is said and done... It's all for Kim after all...
I talked to one of our favorite people @ Deborah today. One of the 3 primary people we know are always loking out for Kim's best interests. she says that had the Bi-V (Bi-Ventricular) ICD been, well, I guess "installed" i(best word I could come up with) that yes Kim wouldn't have had the optimizer turned on because it would have taken over for the Optimizer.
She said that she would have been just as confident if Kim had gotten the Bi-V ICD as she is with the Optimizer, and also added "Study or no study, remember that you always have my number"...
I really do love that place....
And so far, everyone @ UPenn is just as great and just as awesome!
-HuGgLeS- from a Scared yet Optomistic Little Girl....
-Piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Bi-Ventricular ICD, Dialysis, kim, Mule, Optimizer, Stuff, UPenn
Monday, May 26, 2008
Upenn.... Stuff.... Things.... Whatnot....
Just an FYI....
Kim's not done Dialysis today because her blood pressure is too low...
They are going to be putting her on a continuous dialysis that is a lot more gentle on the system as it's a slower process....
Her heart rate is slower (good thing) and blood pressure is lower (bad thing) due to the fact that they moved her from DOBUTamine to Milrinone in hopes of lowering the heart rate... which it did...
They are hoping to see an improvement in the blood pressure over the next several hours as that's what the milrinone and dobutamine were all about...
More from me later... At least UPenn has WiFi... I'll try and work on the sites a bit....
-Piper
Labels: cardioaversion, CHF, Congestive Heart Failure, Dialysis, Dialysys, Dobutamine, Failure, Milrinone, Stuff, University of Pennsylvania
Cardioversion and Dialysis and Doctors, Oh My!
Well lass than 1 hour ago, I gave 'phone consent' for Kim to have a procedure called Cardioaversion.
No, Kim's not 'gone' again mentally, but she was actively having Dialysis done, and didn't feel right getting consent from her while that was happening.
The cardioaversion is something we've been waiting on/expecting for a while and I know that i've bloged about it more than enough recently so I won't bore u with details of that again...
But I can finally tell you more about the TEE...
For the TEE what they are going to do is send a ultrasound probe down the feeding tube which is still in (because she has a sore throat causing her problems eating solid food). Then since the end of the feed tube lies right next to the heart they can get a clear view t look to se if there are any bloodclots that might be hiding in the far corners...
That's what we know for now. The bad heart rythm could come back after the cardioaversion, but we ned to do something...
And I have to say, the future always looks brighter when you have an aggressive plan of action!
-Happy and Brave(ishk) Little Girl!
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: cardioaversion, Consent, kim, Stuff, TEE, UPenn
UPenn Cardiac Care Unit
Sorry about not updating the blog after the transfer happened yesterday, but it was a very long, very tiring day....
The doctors, nurses and misc staff on duty @ UPenn's Cardiac Care unit seem just as top notch and attentive as those @ Deborah.
They took a complete hostory, including a lot of details that I was able to relay, gave use some new info and some new theories and this was just the weekend staff!
The main vibe I got is that a) First Task is evaluation for transplant list, which requires them to take a deep look @ the mass on the kidneys. If thats's cancerous, transplant is out (not sure if out forever or out til removed). b) They think they can medicinally fix her heartrate still. They are going to try a few things Deborah hadn't.
Well, time to sign off, I am running a bit lagte and need to head to UPenn for my daily dose of kim...
-HuGgLeS-
-Piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Cancer, Cardiac Care Unit, Kidney, Stuff, Transplant, UPen
Sunday, May 25, 2008
Allllll Aboaaaaaaaard! Next Stop, U.Penn!
As I sit here, we are curently waiting on medical transport to arrive.
Kim's being transferred to UPen's CHF/Cardiac Transplant clinic...
Kim's doctors here @ deborah have been in contact with their counterparts over @ UPenn and said that sending her there is worth a shot.
UPenn has close to the same reputation of excelence as Deborah but is capeable of doing a lot more for her.
Firstly, is that they will evaluate her and get her put on a transplant list NOW, before it becomes and absolute necessity. This will make it easier for her to recive a transplant if a viable organ becomes available...
Also, UPen will be able to look at, and take steps towards the mass on her Kidney... Deborah is not capeable of more than saying 'Yup, there is a mass on her Kidney' as that's not what they are here for.
Deborah is a Cardio Pulminary rehab/research hospital mainly and fear they are getting close to the end of their abilities as far as Kim's treatment is concerned...
N-E-Ways, I'll update more when the transport happens, but it's currently expcted to happen about 5:45pm EDT, but who knows.
-Piper (a brave lil girl acording to some!)
(Thx KP and CL for the never ending moral support)
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Heart Transplant' CHF, Stuff, University of Pennsylvania, UPenn
Saturday, May 24, 2008
Kim, another day.....
As I sit here waiting for visiting hours to starft for the day, I can't but think "She's going to be mad at me again"...
Kim is just a couple hundred deet away, and I think of myself. While she has dialysis tubes sticking out of her chest. 4IV's, a feeding tube up her nose. And I think how it affects me?
I don't know sometimes. So far 5 people have told me i'm 'full of shit' or similar as to the "i've failed' post, but I can't help but think they are all wrong.
It's about time to head in now, time to "face the music". I have updates for what will happen this coming week, but they will have to wait.
-Selfish Little Girl
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: BiV.ICD?, deborah, ICD, kim, Optimizer, Pace maker, Stuff
Friday, May 23, 2008
I've lost count....
Of how many posts I've done today... many because 3 of them got eaten by the blogging software...
I had to experience the number one thing I would never wish upon my worste enemy... I had to be 'The Adult'....
Kim's not been eating, as mentioned in various posts, and since I can't seem to get her to eat, I gave consent for the nurse to shive a feedng tube up Kim's nose.
She's currently mad @ me. She didn't tell me to leave, but she's not talking with me either...
Some will prolly say, "That's proof you have'nt failed, you 'Did The right Thing'" But I say I failed because I let it go this far...
N-E-Ways as I sai, I wuld never wish this fate on anyone, having to be an honest to goodness adult that is...
-HuGs-
-4y/o Little Girl with the world upon her shoulders.
Posted from moBlog – mobile blogging tool for Windows Mobile
