In about 6 hours, my wife will have a feeding tube

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NothingButLove

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In about 6 hours, my wife will have a RIG placed at UCI's radiology suite. What a crazy two months. It all started on August 1st. Here's a brief run down:


I'm hoping the operation goes well without any complications. I want to slow down for the next couple of weeks. Wish us luck...

Rob
 

Nikki J

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Good luck indeed. I was wondering how you guys were doing.
 

soonerwife

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Thanks for the rundown! It is so frustrating when you aren't getting the type of support you should be from your clinic. I hope everything goes great with your wife this morning.

That's some scary blood pressure. You need to take care of yourself.

Can't wait to hear about your awesome Craig's List experience.
 

lgelb

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Hope all goes well, Rob! Hang in there.
 

geneice

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Hello Rob. Hope all goes well. We are having the same issues UCI. Dan has having some issues and they don't return phone calls even if they are urgent! It's so frustrating. I'm leaving as we speak to make a visit in person , hoping to get my questions answered. Has your wife been seen by Dr Mozaffar? We are told he has more of a "bedside manner"then Dr. Goyal...whom Dan is refusing to see when clinic appt comes up next month.
 

TomSanti

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Hello Rob,

I am fairly new to this board so your story is new to me as well. I hope all goes well with the procedure.. I hope that you will be able to find yourself a good ALS support group. Don't misunderstand me, I think these boards are wonderful but it sure sounds to me like you could use some good in person fellowship.

Good luck and God bless,

Tom
 

Narrowminded

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Rob - what a time you have had lately. Hoping all went well today. Generally it's a fairly easy proceedure.

Hugs,

Sue
 

NothingButLove

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The operation was a success. As far as the procedure goes, everything went perfect. That said, it was one long day!

We showed up to the hospital at 6:30 AM. By 7:30, Ann was all prepped and ready to go. Next thing you know we get bumped by some emergency surgery someone needed. We ended up waiting 4+ hours! Uhhg! After Ann finally had her procedure done, they had to observe her for 4 hours. At the end of 4 hours, Ann was still in pain. The doctors don't want Ann to eat or drink anything until tomorrow morning. So, we hung out at the hospital getting injections of various pain killers in her IV until the pain was reduced. We left the hospital at 6:30 PM. Twelve hours!!!

I'm glad that's over. Thanks to the users of ALS forums for everything.

geneice - I just don't get the UCI ALS clinic. Ann's had nothing but great health care experiences since this started except with the clinic. If I were to grade the clinic, it would be F-. My wife does see Dr. Goyal. For me, she seems to have a good bedside manner but that's it. She doesn't do things the way I would expect.

For example... At some point I expected her to sit down with Ann and myself and have a serious discussion about what we wanted in regards to the end. Did we want a feeding tube? Did we want a trach? Instead, she calls me from her car phone and in her happy voice says a feeding tube will do more harm than good and I might consider calling hospice. Everything was wrong with the way she handled that. It caused me crazy insane stress.

I could go on and on about problems with the clinic. I know Dr. Mozaffar is the other doctor at the clinic. He's also the interim chair of the Department of Neurology/Neuromuscular Disease for the UCI School of Medicine. The top dog... I'm thinking about writing him a letter with all the problems I've had.
 

Narrowminded

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Rob - so happy to hear the surgery was a success with the tube. It can be a long day and yup getting bumped for emergencies is always a bummer. While they don't want her to eat until today, did they order any formula or give you directions for using the tube?

Hugs,

Sue
 

TomSanti

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Rob, so glad to hear that things went well!!! Get yourself some rest, and give your wife our best.

Good luck and God bless as you go forward in this phase of your lives,

Tom
 

KimT

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Glad the procedure is over and the healing has begun.
 

affected

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So glad it's all over successfully.

I would write a letter - take your time writing it, word it really well and send it as high up the chain as you can, send it to multiple people going up the chain even.
 

NothingButLove

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Wow... This weekend my wife needed constant attention. I got zero me time. If I wasn't doing something specific for her, I was rubbing her feet. It was just crazy... Still, it was WAY better than the stress leading up to the operation.

On the positive side, my wife seems to be healing quickly. The day after the operation, she was in pain. Today, she's sore but I can transfer without any problem. The other thing is my wife is already back to eating a full days worth of calories. She drank three Ensures and ate two small solid meals. I had read that people can have problems eating after the operation but she's doing great.

On the negative side, the operation messed up my wife's speech. I understand about 1 in 20 words right now. I don't know if the drugs need to wear off or it's because she's sore or what... It's mega frustrating for her. In fact, she broke down and started crying tonight when my son and I couldn't understand her. She never does that and it freaked me out a bit. Maybe this will turn into a positive. Hopefully, her speech will come back and she'll start thinking seriously about alternative communication.

Sue - A home health nurse came out today and showed me how to clean and dress the tube with a drainage sponge. Also, I flushed the tube with 30cc of water. I'm still waiting to hear from a dietitian and get formula ordered. Of course, this should have been taken care of a month ago but my clinic dragged their feet for whatever reason.

Rob
 
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