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Joined: Feb 2013
Posts: 20
nayucla Offline OP
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Joined: Feb 2013
Posts: 20
Hi everyone,
I wanted to give you a quick update on my mom's health.

My mom had her surgery on Tuesday the 12th at UC Irvine. The surgery was 10 hours where she had a mandibulectomy along with a flap reconstruction surgery. They were able to preserve her lower lip which was a good thing. The OR nurse told us that the surgeons were surprised by the depth of her cancer and had to remove a small portion of the base of her tongue as well. She also had a tracheostomy and a feeding tube placed. There was some clotting issues with the flap and there was another 4 hour surgery on Wednesday.

She is recovering well despite everything and she was finally transferred out of surgical ICU last night. The swelling is going down the skin is looking good. She was able to sit up for two hours the last couple of days. Today, they were going to try and wheel her around the hospital. They removed most of the drainage as well.

The resident today mentioned that she may be discharged from the hospital by Friday (the 22nd). I'm worried. What do I do? I started looking into sub-acute skilled nursing facilities but there are far and few options that are sub-acute and accept Medicare. I'm trying not to freak out but it's just me living here. My aunt few back home. The facilities that I did see where awful. Quality appeared sub-par as best and most patients looked comatose. I'm worried about leaving my mom there and she can't speak so it is hard for me to check on her as frequently as I'd like. I notice nurses making mistakes at her bedside within the ICU, I can't imagine what the risks are at these facilities that I've seen.

Anyone living in Orange County, CA have recommendations for people to contact about finding a sub-acute care facility that accepts medicare? Or, what are my alternatives to transferring her to a nursing facility (outside of me quitting my job and dropping out of school). Given that I have no other means of income or support, I don't think that is our best option.

I'm worried, scared, and overwhelmed. I'm so busy keeping it together all the time because I have to that I haven't even had a chance to feel anything... and I just end up feeling very angry. I feel like a robot - it's just been go go go.




Nay, daughter/caregiver to:
Mom (65 yrs), non-drinker, non-smoker
Mandibulectomy+flap reconstruct: 3/12/2013
Biopsy+CT/PET: April/Sept 2012+Mar/2013
Dx: SCC in the jaw - Stage IV a
Tx: 3 cycles TPF chemo (last cycle ended 1/28/13)
- soft foods diet, hospitalized 2x, jaw bone disintegrated
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Nay, thanks for updating us on your mothers condition! Its a long road when someone goes thru a mandibulectomy. Its something that is debilitating. Im so sorry that you dont have more help there.

Does your mother belong to a church? I would reach out to anyone who offered to help and see if they would mind staying with her maybe 2 days a week while you are in school and working. If you could get 3 people to help then it will be much easier on you. Can your other relatives come help you? Ask about a visiting nurse and a home health aid to come help you at home. Try to prolong the hospital stay since you are not equipped to care for her at home, even if they keep her a couple more days it would help.

I know it seems overwhelming right now but in a month your mother will be doing much better. It really will become much easier as time goes by.

Good luck!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2012
Posts: 3,267
Likes: 4
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 4
I was on a high severity floor in the nursing for three months, and don't have many positive things to say. There are differences in facilities, staff, activities, rehab, and even the floors themselves, so one needs to be choosed wisely. When I asked for a shower, I kept being put off. After a month I was finally hosed down like an animal, and rehab was not in my plan. I saw a difference with those that had family involvement, otherwise. they just want to drug, and some mistreat you. I was constantly tryin to be persuaded by the " social worker" to sign my benefits over, be a permanent tenant since I needed to be institutionalzed. Finally I got out by getting an infection, severely dehydrated, and a family member calling 911. I went back to the hospital for 21 days, and never went back.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs







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