Re: I may be gone for a bit...........

by **Galvatron** Tue Jul 12, 2011 1:49 am

Quoted text from the Bugbot....

7-11

"She gets released tomorrow. Then right over to the dialisis center to start our training. She had a rough night the fluid for the dialisis can press on a nerve that causes severe shoulder pain. The doctor is going to give her a morphine type pill for the pain so she can go home."

by **Galvatron** Wed Jul 13, 2011 9:33 pm

good grief Ben. I wish there was more we can do for her.

Here is the latest text from the Bugbot 7-12

"The hospital dialisis hurt. It was pinching a nerve and shooting pain to her shoulders. She was released this morning and we were at the dialisis center until 3pm. Good news is the at home one won't hurt nearly as much if any."

by **Rumble** Wed Jul 13, 2011 9:43 pm

Thanks for keeping us updated Galvy, I too wish that there was more that we could do for her.

by **Galvatron** Thu Jul 14, 2011 4:40 pm

UPDATED 7-13
(I know the updates are a day late sometimes, but i work late at night a lot and don't get on the computer much)

"Today was good, the draining of the fluid still hurts towards the end.
The system is pretty easy to operate. Hell a Junkion could probably work it. Right now my fear is how stubborn she is with pills. Before she can be considered for a transplant she must stop fighting over taking them. She also has to be in the right state of mind and she just wants to put her head in the sand and wish it all away. Not that we blame her but we worry about it."

by **Ramjet** Fri Jul 15, 2011 2:42 am

I been trying to keep up with this on Facebook. Just sending some positive thoughts her way.

by **Galvatron** Wed Jul 20, 2011 4:30 am

Update from the Bugbot

7-19

"Had to watch Ariel in pain twice today so the doc can see what's going on. The pain is from her intestines and bladder spazzing during the end of the dialisis fill. We are putting her on some new meds to hopefully stop this. We got Ariels supplies inventoried and sorted. Equipment put together and unpacked."

Not a good update i'm afraid to say. This poor child is going through hell. She is definatly a fighter. I hope she don't start giving up.
Hopefully the new meds help her out and take away the pain.

by **Galvatron** Thu Jul 21, 2011 2:39 pm

UPDATED FROM THE BUGBOT
7-20

"Did the home dialisis. The first fill was bad as she tenses up. That causes a lot of pain. At the dialisis center it went good with minor discomfort. The 1st drain & fill went great. A little uncomfort caused her to shift in her sleep. She woke up a bit during the fill. But she fell right back to sleep."

Sounds like a small step of progress.

by bumblebee Sat Jul 23, 2011 4:35 pm

Time for me to update. The at home dialisis is going ok. Arieal still feels some discomfort and occasionally wakes up but falls right back to asleep. Only major problem is she has been rolling on her tubing and causing alarms that sometimes we sleep through. Its annoying sometimes and we are not sleeping well.

by **Galvatron** Sat Jul 23, 2011 11:18 pm

Soon it will all be like riding a bicycle.

by bumblebee Mon Jul 25, 2011 5:16 pm

Last night was rough. They machine acted up kept tossing out a pneumatic leak code. We had to set it up 3 times with new supplies each time, phone calls to tech support and the oncall nurse. Good news is a new machine will be here by 5pm today and the 3rd time it worked or we would have to stay up doing manual dyalisis all night instead of getting cat naps.

by **Rumble** Mon Jul 25, 2011 6:46 pm

Hope that the new machine is hassle free, last thing you all need are additional problems.

by **Ramjet** Wed Aug 03, 2011 1:53 am

Man, they need to send an actual person out right away when there's a problem like that.

by bumblebee Sat Aug 06, 2011 4:42 pm

its not we have to baby sit this d@mn machine all night. Arieal keeps rolling on her tubes and setting the alarms off. Our 13 year old went ballistic nearly 2 weeks ago and is in a physc ward for a while. our preventive worker who is suppose to help us turned us into child protective services cause we are in syaracuse too much and our house isnt spotless. kids dont want to help do there chorus. stress levels are maxed out and if i say anything to christine about chilling out she flips out on me. so we are not getting along too well at this time...............

Good news tho so far arieal's machine with all its moronic moments is doing what its suppose to do and everything looks great. we see the urologist monday to find out what the mri says and what we are going to do with her bladder issues.

by **Galvatron** Sun Aug 07, 2011 3:12 am

geeze dude

i hope things turn around for the better soon.

by bumblebee Thu Oct 13, 2011 5:40 am

Long time not many updates...
Well Arieal had the tubes from her kidneys to her bladder replanted to try to fix the bladder refux. This operation seemed tougher than when the PD cath was. Found out sje has an elastic bladder that does not empty correctly, so she has to catherize herself twice a day to keep her bladder empty. Her machine keeps getting code due to bad cassetts bags pumps etc... We got a 3rd machine today we shall see how it goes. We all could use a good nights sleep with no alarms. Funny thing is when we do get an alarm free night we dont sleep.
A bit of good news. She has her 1st apptment with the transplant clinic later this morning. We are nervious and excited.

by **Rumble** Thu Oct 13, 2011 8:45 am

Fingers crossed for the new machine being more reliable, and good luck at the transplant clinic, heres hoping that it all goes well.

by **Galvatron** Thu Oct 13, 2011 5:00 pm

Yes indeed, good luck on everything BB

by bumblebee Mon Oct 17, 2011 12:45 am

Well the 4th machine f@%&ed up 1st night out of the box....back to manuals again. So we had to shoot up to the clinic to get more boxes of manuals. We are now waiting to get a new machine and new company. Let's hope the new one works. Right now we are doing the manuals 6 times a day. The meeting with the transplant team went well we are waiting to see if she gets on the list to get a new one. We will look for a live donors cause those are more likely to last and be better.

by **Galvatron** Mon Oct 17, 2011 2:24 pm

Are you getting the machines from ACME?

All joking aside, if they don't put her on the list, I will rip out every kidney I see until we get a match for her.

by **Rumble** Mon Oct 17, 2011 7:41 pm

Damn it, those machines are useless. At least there is some positive regarding the meeting with the Transplant Team. Keep us posted.

by bumblebee Sun Feb 19, 2012 3:28 pm

since last i have updated things have been goin good for arieal. her machine has settled down but we are busy with doctors appointments and counsuling. she has been taken off the active list for a month or 6 due to needing to work on taking meds without fighting. once we get her over that or the time is up she will be back on the list. either way hopefully by summer we will be getting ready for a new kidney for her.

by **Galvatron** Sun Feb 19, 2012 8:12 pm

best of luck for that child

by **Sixshot** Sat Jan 12, 2013 5:40 pm

Hope all has been well bud. Keep in touch when you can.

by **Galvatron** Tue Mar 26, 2013 2:04 am

Seen this on Facebook and would like to share it here....
https://www.facebook.com/#!/pages/Support-for-Arieal-Bowers-Kidney-Transplant/235068903288673
This is for your mini con Bumblebee. My thoughts and prayers are for her.
I posted this here to spread the word around a little bit further. It's not a lot, but anything helps.

by **Sixshot** Tue Mar 26, 2013 2:09 am

Just liked the page. If there's anything I can do you won't have to ask twice bud. My prayers are still with her Ben and I hope she gets the best help the area has to offer and a kidney donor real soon.

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