Status

Unfortuately Jen is sick again, and has been for thepast 2 days. She is feeling somewhat hopeless, I'm trying to keep up her spirits by reminding her of all the positive developments that have happened over the past couple of months.

In other news, there is a possibility that her glucose monitor may be covered by my insurance. I'm keeping my fingers crossed.

Great news

So the trend is continuing to be positive, Jen's latest Echocardiogram show that the fungal infection is no longer there. How fricking awesome is that? A lot I tell you, a lot of, erm...awesome. ness. full.

UPDATE:

It turns out the latest theory is that it wasn't fungal but just a clot. Strange, and they are surprised that it just went away the way it did, though she's been on Warfarin and/or Lovenox for over a year now. I think it was due to the soothing magic of this man.

Links that caught my eye

OK, one of the best videos I've EVER seen here, featuring the "Keepon" dancing robot seen below...




OK, I need at least 10 of these.

DOOMSDAY FEARS SPARK LAWSUIT - The experiment I work with at the moment is being called the 'doomsday device, based on bad science of course and now is being sued!

Parents Pick Prayer Over Docs; Girl Dies - This just pisses me off.

An UPdate for a change

So Jen received some great news today, UCSF thinks that she is the 'perfect candidate' for the stomach pacer surgery. So now, FINALLY, we have some plan of action that doesn't extend so far beyond the horizon of 'at some point'.

They also informed us that a gastroectomy is a very bad option and should not be considered unless absolutely necessary. So...good thing we waited.

So, it goes like this. They will wait until Jen's fistula is working properly, and then they will remove the original dialysis port in her chest. Hopefully they will remove the fungal infection at that point if it is attached to the catheter line. After that, she will be transfered to UCSF for the pacer surgery. Following that, she should be able to come home.

Home? What's that??

Update

Photo
Jen is doing OK, same as usual. I'm working to see if we can get her the Minimed pump still, it appears as though it is not covered by insurance. I found out that there is another full-time glucose monitor, the Dexcom.

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Wow these posts get shorter and shorter don't they? Sorry about that.

Updater

Photo info

Jen's doing OK, she was sick over the weekend but has recovered quickly. Her arm has healed well after the surgery to install the fistula, and they removed the staples Sunday.

I am currently working with her doctor to get an insulin pump installed. Normally they require the subject to be out-patient status but with her condition he feels that she should be viewed as an exception. With the pump installed her blood sugars will remain steady and episodes of low blood sugar will be forewarned by an alarm.

The next step will probably to have her transferred to UCSF for review and possible surgery to install the gastic pacer device.

Update

Jen is unfortunately sick again, her stomach is very painful. This seems to be the normal cycle, a week or so of feeling 'O.K.' followed by 1-2 weeks of nausea.

I am trying to see what the next move is and when that is going to happen.

I apologize for the lack of quality and frequency with the blog, this has been a really hard couple of weeks for many reasons.

Low sugar

Well the hospital strikes again, apparently Jen had a blood sugar of 17mg/dL at 5 a.m. this morning. I have talked with her doctor to get them to set a different regimen...maybe test her blood sugar more frequently or something, or am I talking out of my ass here? It's one thing to have low blood sugar, but 17mg/dL is just a bit excessive I think. Her nurses probably think she's just doing it to get attention.

Ugh.

And all this after she's had such a great couple of weeks. I hope that this is just a minor abberation and she feels better quickly.

Can someone please tell me exactly what god/goddess/cat/statue/turnip we pissed off so I can make amends?

Surgery

Jen went under the knife this morning to create a fistula for dialysis. She is doing fine, in pain but recovering nicely.

This access should allow easier access for dialysis, and reduced chance of infection. It allows her to lead a more normal routine when she comes home, without worrying about having tubes and an open port in her chest.

Overall she has been better in the past couple of days than in any that I can recall for the last 7 months. I am very hopeful that she is on the road to coming home soon. Once she is finished with the current IV antibiotic regime she will be assessed for just that.

If she continues to improve then the next steps will probably be surgical. Among the surgeries still being looked into are the gastric pacemaker, gastric bypass, and/or heart surgery to remove the fungal infection.

Another general update...

Photo: A visual representation of my state of mind at present.

Jen is getting a fistula added to her arm for dialysis, it's less prone to infection than the one she has now. If I understand correctly she can shower and do usual things with this as opposed to the chest port she has now.

Jen is doing OK still, she pulled out her PICC line Friday, probably in her sleep so she needs another one put in on Monday.