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Rhonda Kim

Member
Joined
Jul 10, 2008
Messages
19
Reason
CALS
Diagnosis
07/2008
Country
US
State
Ohio
City
Cincinnati
Hi, For those of you that read my post 2 plus weeks ago. My husband had his PEG put in last Thursday. It went ok but they had to keep him overnight he throw up several times and the tubu hurt so bad he could hardly move.
He went home on Fri but started a fever right off. When I called the Dr he said it had to be over 100.4 to be a fever. I gave him Tylonal and his other meds throught the tub and we waited until Monday when the nurse came to bring us cans of food and go over all the orders she had from the doctor. By now cellutirous(?) had set in all over his stomch what a mess he had been sick now for 5 days.
She gets the Dr to call in anitobiotics and says if its not better by Wed we should call the Dr back. In the mean time I set up Hospice to help and they are coming at 5:00 on Wed. So, Joe decides to wait on the nurse instead of call the Doctor or going to the hosptial.
I lay down with him about 1:00 pm and does off, this is Wed. He hits me in the head with a back scracher and I smell this gross smell. He waves at me to come around to his side of the bed. He is sitting with his back to me. I get over their and the disk had popped off and puss, blood and his stomch contents we running out. Half a sleep and freaked out I call 911.
The ER Dr calls in the Surgens and the says they have a whole team coming in and as soon as they get their they will take him back. For those of you that remenber me, Joe's FVC is at about 21% right now. They ask Joe if he has said his prays because if the tube has pulled though his stomch wall they will have to cut him open to take out the tube and close the hole and with is breathing so low he might not make it.
I don't have to express how scared we were. I called his brother and we were headed for surgery. Ten min later here comes the Dr they didn't even have to put him out they got it back in place, Thank God for some good Drs.
Yesterday the tube did slide back into his stomch a little pulled it up and they put in a few stiches to tighten up the whole, they had put in a smaller tube so it could drain. Oh, how gross it was.
Any way he got to eat dinner last night . Orange serbet, Yes he still is eat some how, mashed potatoes and gravy, mac and cheeese, choc cake and choc milk and spag and sauce. It took him several hours but he was detemind.
Well thats anothe chapter in the book of ALS fiasco don' t you think. At least he has came out of this with only the use of his BIPAP.
There is not a time set to bring him home but thats ok we want him well first.
Thanks for listening, Rhonda
 
Rhonda I am so sorry to hear that Joe had such a horrible complication from the PEG placement. How scary for the two of you. I am glad that they were able to get the tube in place without doing surgery and are getting him the treatment he needs for the infection. I hope he is feeling better and back home with you soon. My thoughts are with you.
Dana
 
Hi Rhonda, My heart goes out to you and your husband for having to endure such a nightmare. How very terrible! Did they ever say what caused the infection or why he got so sick? I sure hope you can "rest up" while he is recovering in the hospital. Blessings, Pam
 
Rhonda, I am so sorry you and your husband had to go through this. Did anyone ever say what went wrong to cause this? I am going to need a PEG myself soon so I am trying to gather information before hand. Thanks ands may God grant him a speedy recovery.
 
Rhonda, that is a horrible story and I am glad that your husband is doing better now. I hope that his PEG tube experience will be better from now on because it is such a useful thing to have. I know all about the effort and energy that it takes to eat real food by mouth so I applaud his determination. Once he heals up and recovers from the infection he will be able to use the tube to supplement his real food and not lose weight. All the best.
 
WOW, that is quite a story! I am glad things are stating to get better. I had such an easy time I can't fathom what you both have been through. I pray it is all behind you now!
 
Good luck to your husband Rhonda! Hope he can come home soon!
 
I hope it goes well....
 
Thank you all for your concern. I only heard one reason for Joe's infection. He got it in surgery. They talk as if it can be a common thing to get celulitious after surgery. I am not sure so I plane on listening and asking more questions. As far as all the complications with the PEG it's self the surgen didn't understand why the Gastro Dr put in such a big tube and disk inside his stomch.
I think the incision could not drain which built up pressure behind the disk on the outside of his stomch so it popped off and moved the tube. That is my take on everything I have put together and a little incompedence on the side of the Gastro Dr.
I had a feeling. My Dad always sad if you need surgrey always get a surgen. I heard his words as we were having our consult with this Dr.
To anyone needing a PEG I would find out how many the Dr has done and get it done before your breathing goes below 50%. They tried to tell us that but it is a hard thing to accept when a person is still eating good and you might not use it for close to a year.
Believe it or not we are laughing it off. Joe has high sugar so now the tube feedings are driving his sugar sky high. He is MEAN not just to me but everyone. At least now he is taking it out on the insenitive nurses. He had a drill sargent today that he gave the finger to. Sorry had to laugh.

I'll keep you guys informed. Rhonda
 
Rhonda, glad your husband is improving now and hope you are reaping the benefits.
When I had the PEG done they kept me in for several days to make sure it settled and the food regime went smoothly. Good job they did, 24 hours after the op, I started to haemorrage out of the hole, it went on for 8 hours, soaking at least 4 pressure pads/bandages plus all the sheets. Panic stations on the ward, and me, I thought I was bleeding to death. It seems it is a rare but known about complication...if the spot they choose to make the hole has a lot of blood vessels, this can happen. I do get little crystals form around the hole all the time, very slight leakage of stomach contents..but just keep it clean. My husband has been told to poke the tube in about 6 inches and twist once a week to stop it sticking and growing over.
 
Rhonda, sorry you and he had to go through all of this. Tell Joe to be careful his finger might lose it's movement in that position. But, then again that might be more fun with some of the aids and nurses I have had; I wish my finger were stuck out.:lol:
Especially for the one that ripped my catheter out completely while preparing me for shower. Ouch. I wanted to give her a lot more than my finger. Just figured next time she came she might want to take out a little revenge. So just played it cool and sat there bleeding and screaming.
I think if we could get all our experiences together it would make a good book.
 
AL - If we put all us pALS and cALS experiences together it would be the best horror show ever! Then again it could be a tragic comedy!
 
:smile: How true. On one hand you have the keystone cops figures like me and AL and our lawn mowers. Then all the family tragedy wow too much to comprehend.
 
ronelle

Hi Rhonda,

Came home yday from tube placement fiasco. Spent 2 weeks in hospital. My breathing still 95% but
stopped breathing during op. Was put on ventilator and in ICU for 5 days. Developed fever on 2 nd day and crying from pain. infection with pus and food leaking from wound. Lots of antibiotics and still infection. Cleans wound 3 x a day. Feeding going well. Tell Joe I am thinking f him. Was a major setback for me
 
Oh my that was terrible. I am so glad it all finally worked out well. It could have taken the wrong turn it sounds like. I will definitely check out the Doctor doing my surgery and make sure they know what they are doing.
I am so glad you made it through this. Thank God.
 
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