GeekBlog
Friday, May 30, 2008
Clearing up a few things...
Sorry, it's come to my attention that I have been a bit vague on some details....
Mainly because I'd been passing certain bits of info to people and forgetting to blog them...
Kim had the cardioaversion on Monday, or was that Tuesday... Sorry, it's running a bit together now... The Cardioaversion was a success and she's in a normal Sinus Rhythm still! YAY!
Her Kidney Function is still way down, but her blood pressure is up enough that she's no longer on the 24/7 Dialysis... But that means that a bit of the "fog" or "confusion" is back...
Those are the times it's worst... At least for me, and I suspect the same for her...
For her, she doesn't know what's going on and it's all strange and weird...
For me, I have to be "forceive" and try and make her eat, or convince her that she needs to stay in the hospital no matter how desperately she, and I, want her to come home...
I think I could deal with all the medical issues with ease, if it wasn't for her bits of mental confusion... THAT is what really makes this all so tough...
Bill and I made the mule run today... I picked up 2 CD's of information and various reports from Deborah... Everyone there, and here at UPenn are definitely top notch.
I think that's it for now... I've been trying to do a bit of writing today, but instead have done a lot of helping Kim or helping Kim's nurses, as they seem to be a but short staffed, or just really busy..
-HuGgLeS-
-PiggilyTails
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
Wednesday, May 28, 2008
Encyclopedia Kimtanica!
Welcome to Grand Central Piper, home of Encyclopedia Kimtanica!
I've been on the phone so much today it's not funny!
I've been organizing records transfers from Deborah to UPenn... Getting administrators to fast-track things, getting doctors to request the right items.... All the ppl @ Deborah and UPenn are absolutely GREAT!
In a couple hours, Kim goes for a cardiac catheterization so that they can see how well her heart is pumping...
Kim's hear is in a normal sinus rhythm now.... Her heart rate is 84, her Blood pressure is 97/60... Things are definitely starting to look up!:)
I've talked briefly to Kim's doc about the Optimizer and he's gonna check with the attending to see if they want to have Deborah to turn the Optimizer back on.
-HuGgLeS- 2 all...
-Piperishk
Tuesday, May 27, 2008
Trans Esophigial Echo
Not only do we know that the TEE procedure is about, we know what the acronym stands for...
They needed separate consent for the TEE...
-Stil, crossing-x-fingers
-Piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: cardioaversion, Consent' Kim, TEE
aphone Consent
Just a lil FYI, just shortly after 08:00am I gave phone consent for Kim to get anestesia for the cardioaversion procedure.
-fingers-Xfcrossed-
-Piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Anestesia, Cardioversion, TEE
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
Promised updates...
Kim currently has 2 devices in her chest. I've talked about them before on this blog... 1 is a device alled an "optimizer" which reads impulse sequences from the heart and does something to produce calcium which makes the heart beat/contract with more force.
That device is from a company called 'impule dynamics' which I belive has been since bought out by "boston scientific" but I could be wrong on that front. It is/was a research device and Kim was part of a study on it's effectiveness...
The other is an ICD or 'defibulator' from gudant whom may or maynot Also been bout out by Boston scientific...
The docs are currently planing on replacing the ICD with what I belive he called a BI-V.ICD (By Vee Eye Sea Dee) which will mechanically slow Kim's heart rate by cutting out half the impulses the heart gets. So it won't beat quite as fast. This is important because Kim's heartrate is really fast right now. It's actually @ 119
When I asked how this new icd would affect the Optimizer I was told "She's no longer a part of that study".
Now the optimizer has been turned off for about a month now while we waited for the Cardioversion but the doc said last night that they most likely won't ever be able to do the cardioaversion....
Well that's what I know...
More later maybee...
-Piperishk
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: BI-V.ICD?, Boston Scientific' Stuff, Guidant, ICD, Impulse Dynamics, kim, Optimizer
Kim's Back! (ishk)
Yup! She's back! Mostly, atleast mentally that is.
She's a bit fuzzy still, and has very little energy, but she's eating. Or atleast trying.
She drank her lunch nutrition shake, and tried to eat some solid food, but she can't swallow the solid food because of the feeding tube. They are going to continue the tube feeding still today and tomorrow because of the severe lack of nutrition for the last week, but it will probably come out on monday!
She's still upset at me, but is kinda understanding the need for the tube. She's also starting to ask questions about various things and trying to string the path from point A to point Z together in her head.
Kim is a very bright and intelligent person with a genius level IQ and a great memory for facts and occurences, and seing her not at her full mental state is always scary.
N-e-ways, it's nice to have good news for once, and I will post that info about the following week's plan of action L8r.
-Happy Piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: kim
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
As I post this....
Kim should be on her way ack from Surgery. They had to remove the dialysis stint from her legg and put a new more permenant one on her neck.
Other things planed for today are the permenant IV in her arm that doesn't have to be changed every 3 days, another 1.5L or fluids to be removed by dialysis, and the possibility of the Cardioaversion and / or TEE procedure.
There is good news too, Kim was slightly more with it this am, and took all her pills.
-HuGgLeS-
-A scared, but not terrified little girl.
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Kim and whatnot
Wow, 2 posts in 1 morning.....
I'm sitting here now... In the MICU waiting room @ Deborah Heart and Lung Center.
I showed up early as I promised Kim, but the MICU receptionist said they weren't ready for me yet.
I belive today is a Dialysis day, so I hope they aren't readying her for dialysis as i'm going to need a whole lot of time to coax her into eating and taking her pills.
It's possible they are readying her for surgery. I know they are going to put a per.... time to go in.. they just came for me... more later...
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Congestive Heart Failure, deborah, Dialysys, Failure, Kidneys, kim, Rhenal failure
Small things....
Just a small update, as I*s a little afcter midnight and I have to be up and about around 5:30ish am...
I managed to get Kim to eat a little today. Very little, but the nurses were happy ans so was I.
On the down side, she refused her medicine in the morning (anything in pill form atleas. The nurse said she never refused any of the IV bits).
The nurse asked if we could come in the morning to be with Kim and help to get her to eat and take her pills and I said yes, and Kim promised me that she would take her pills and eat if I was with her early in the morning. So tomorrow, or I gues today actually as it's friday now, I get to be @ deborah really really early in the AM. (so early in fact that I have special permission to be there before visiting hours).
Hopefully I won't fail my Kim this time.
-A scared and lonely little girl.
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: deborah, Dialysis, Kidneys, kim, Other Stuff...
Tuesday, May 20, 2008
Me.. just me.
U know...
People keep asking me how I'm doing....
And I always say 'fine' or 'alive' or something similar...
But the truth is, I haven't been alive since Kim got sick.
I exist, but that's it.
I can't live without Kim. I can't survive without knowing it's going to be ok... And I just don't know that it will..
Someone just pointed out to me, that my feelings for Kim parralel 'Pepper' from Kim's seried EXPO Summer. But Pepper never failed Kim of her own will. Pepper was kept from protecting Kim...
I've been with Kim through it all, and somehow I failed. I was the person in charge of keeping her safe. I managed her diet. I kept track of her medications and I failed somewhere.
I know people are going to say it's not my fault. I would say the same to someone else in the same position. But I FAILED!
As I sit here now, I'm trying to get Kim to eat something. I'm not sure how to get it done. I've managed 3 bites of apple suace and 3 sips of the choco health shake. Nothing solid.
I don't know what to do, or how to fix it. Above all, I fear it can't be fixed.
-Piper/Failue at everything important.
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: deborah, kim, Me, piper, skrewed in the head
Saturday, May 17, 2008
More on Dialysis.....
Well, we just got to spend about 5 mins visiting with Kim.... She's currently going through Dialysis and will be for another 3 hours.... According to the dialysis nurse it's scheduled currently at 4 hours every other day... But according to the attending Nephrologist they may bump that up to 24/7 dialysis at least for the short term. The main issue besides the kidney damage/failure is her bloodpreasure. They are currently trying not only to remove the waste from the blood, but also a bit of fluids to help with the bloodpreassure issue.... I'm scared. I'm very scared....
The nephrologist is helpful that things COULD improve. She says she's seen it happen. I just want my Kim back.
-NoOne without Kim...
Kim's unwelcomed journey...
For those keeping up with these things... the doctors called today to get permission to begin Dialysis on Kim...
The scariest part of that is the fact that we now have Power of attorney over Kim's medical care... the doctors are followin the advanced care directive now... Before it was a 'just in case'.. Now it's real...
-Nobody Real.........
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Dialysis, Kidneys, Living Will, Power of Attorney, Rhenal failure
Friday, May 02, 2008
More Kim...
Here's the latest....
Kim will be moved sometime between today and Friday to a Rehab facility somewhere closer to home. She will return to Deborah 'in a fes weeks' to have the cardioaversion done, after she's had min 4 weks of 'blood thining therapy'.
Not sure I said this before but her fluids were so bad that the swelling had been compresing the liver and causing it to not make clotting factor which artificially put her clotting numbers to where they wanted it on therapy. Now that the fluid is mostly gone they have to start a new regimin of blood thinners and keep track of those numbers...
If I get the chance I will be joining friends @ camp on Saturday evening and bringing them home on suday... if not i'll just pick them up sunday...
Am I selfish for wanting to do the camp thing on Sat night instead of being close to Kim?
-piper
Posted from moBlog – mobile blogging tool for Windows Mobile
Labels: Camp, cardioaversion, deborah, kim, Rehab
