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#195846 - 03/08/18 12:40 AM Advise on how to help in Hospital  
Joined: Mar 2018
Posts: 10
scareddaughter Offline
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scareddaughter  Offline
Member

Joined: Mar 2018
Posts: 10
Hi, I am thankful for sure for this forum! I would love advise on how to help my dad who just had his Glossectomy and Flap replacement. He is having a miserable time with the trach as it clogs up every ten minutes and makes him feel like he is chocking. Luckily he is still in the ICU so one of us can be there to be his advocate, but they are moving him tomorrow to a regular hospital bed where I believe we are not allowed to be there 24/7. I am worried that he will have panic attacks as the nurses dont get there fast enough? Any advise on what to do in this situation?


Audrey Wells
#195848 - 03/08/18 03:30 AM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Jun 2007
Posts: 10,116
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,116
PA
Make sure he has paper and pen or a dry erase board with dry erase markers. If he has an ipad, theres an app called Speak It that will say out loud what he types so he can communicate with the hospital staff easier. The other thing is to make sure they address his pain levels so he is not uncomfortable. He had a major surgery and Im sure he must be in pain. Make sure his medical team and all the nurses know your father has panic attacks so they can watch him closely.

The trach needs to be cleaned out at least once a day. The hospital should have a suction machine to get the gunk out so it doesnt get clogged so much. I would definitely talk to the nurses and the doc when you can and make sure they understand the trach is really bothering him and he's having issues with it clogging.

Be there as much as possible to be your fathers voice. Some facilities say no visitors 24/7 but then will bend the rules especially in cases like your fathers where he isnt able to speak. Always ask, dont just assume they patient guide applies in your fathers case. Even if it specifically says visitors allow say noon to 8PM, Im sure there are plenty of visitors staying well past that time. Ive seen it during my many hospital stays. If you dont ask you dont get. The nurses are probably overworked with too many patients to juggle. Having family members help with a patient helps them which is why they often will look the other way about those things.

Best wishes to your father for a speedy recovery.


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
#195849 - 03/08/18 05:57 AM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Jun 2013
Posts: 210
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 210
alabama
Dittoing Christine ... ask about staying with him. I was with a friend recently who had a week and a half hospital stay due to anemia and something else, they never did find a cause. She was weak and confused, and so a fall risk. She could not be left alone, but the nurses were too busy to be with her all the time, too. (And the bed alarm they had was kind of useless, especially with her confusion at the beginning.) Along with other ladies from church and two of her children, I took shifts sitting with her ... just keeping company, chatting, and making sure she either had a nurse or a good strong hand (and someone to push the IV pole) when she had to get up for anything. I have NO clue what the official visiting hours at that hospital are, but they had no problem with letting all of us take shifts to help out, and with her son staying overnight. (One of the chairs even folds out into a sort of bed for just that reason.) I've done this for other friends at other hospitals, too. One has very clear visitor hours, but exceptions for special health reasons ... they just ask that you check in with Security at a certain time and get an official visitor sticker if you're going to stay late.

Never be afraid to advocate. ((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
#195851 - 03/08/18 08:28 AM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Mar 2018
Posts: 10
scareddaughter Offline
Member
scareddaughter  Offline
Member

Joined: Mar 2018
Posts: 10
Thank you so much ladies as I can't tell you how much it helps to have caring people like yourselves! I am sure you hear it all the time as it is scary at first and I dont think any of us expected this surgery to be what it has been. My dad is miserable and we feel helpless. I know it will get better though. thanks!!!


Audrey Wells
#195864 - 03/09/18 10:14 PM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Mar 2018
Posts: 10
scareddaughter Offline
Member
scareddaughter  Offline
Member

Joined: Mar 2018
Posts: 10
So we just got the news back from the tests on the Lymph nodes that the cancer is aggressive and has spread. They are saying he is going to need Chemo and Radiation. He is just 9 days out of the Tongue surgery. Any experience on what to expect now? How long is it usual to start the Radiation. He is still of course recovering from the surgery and that has not been going great. Would love to know other people experience in a similar situation. Thanks


Audrey Wells
#195866 - 03/10/18 01:06 AM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Jun 2007
Posts: 10,116
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,116
PA
Im very sorry the results were not better! Im sure everyone is upset. I have no doubt your father is in pain and shock. I suggest talking with his doctors about any therapists they have on staff he can talk to. OC patients (some caregivers too) often have a hard time dealing with their illness mentally. Its definitely NOT easy going thru being diagnosed with a serious health condition and going thru brutal treatments. Speaking from a patients perspective, after being diagnosed with cancer, we all worry even if we dont always appear as if we do. Being forced to face our own mortality is definitely not easy to handle mentally!

Usually we see patients start rads with or without chemo about 6 weeks post surgery. During this time the patient needs to rest up and prepare for their next round of treatment. Once he is feeling a little better try to encourage him to eat as much as possible. Try to get him to have all his favorite foods, desserts too. Radiation treatments for most arent easy and can cause some issues that will make eating difficult. He does NOT want to go into rads with cravings! Its likely to be many weeks after finishing rads before your father is able to eat well enough to have his favorites. If your father is slim, he needs to put on a few pounds before going into rads.

Hang in there!!!


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
#195877 - 03/13/18 08:49 PM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Sep 2014
Posts: 85
Vanpaddler Offline
Supporting Member (50+ posts)
Vanpaddler  Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 85
Vancouver, B.C., Canada
I had a similar surgery and the first few days of the trach were indeed terrifying. It would clog up often (several times per hour in the first few days) and I would be really scared that I would choke before a nurse could come to suction it out. It was very difficult to try to do it by yourself, with the wrist wound and staples & gauze holding that together, an IV tube in the other arm along with the clip thingie that attached to the heart rate beeper, plus all the other junk attached to me (nasal feeding tube, bandages on my neck for the neck dissection area, catheter, the cardboard French fry container taped to my thigh where the skin graft to fix the wrist came from, etc), not to mention being extremely sore & physically and mentally tired from not being able to sleep because of the constant choking, and nurses coming in to take blood samples, check on me, etc. It was brutal and absolutely barbaric. But it saved my life.

In my case, I was in the hospital for 16 days, then finally sent home. I was "lucky" that I did not need chemo, so I can't comment on that part. I had to come back for radiation about 6 weeks post-surgery. By the time that happened, most of the stuff that was disturbed due to the surgery had healed significantly and I was able to eat almost normally again. During the healing process post surgery I had learned to eat some of the foods listed in threads in this forum and I had also supplemented with vegetable juices made with my juicer. The high calorie milkshakes were something I ate a lot of but I was pretty sick of a high fat, high dairy diet by the end of it all.

Last edited by Vanpaddler; 03/13/18 08:53 PM.

Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
#196164 - 04/16/18 10:39 AM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Mar 2018
Posts: 10
scareddaughter Offline
Member
scareddaughter  Offline
Member

Joined: Mar 2018
Posts: 10
Thanks again for the suggestions! We are working with my dad to get those calories in!!!


Audrey Wells
#196620 - 06/17/18 01:56 AM Re: Advise on how to help in Hospital [Re: scareddaughter]  
Joined: Mar 2018
Posts: 41
Vicky1 Offline
Contributing Member (25+ posts)
Vicky1  Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 41
Maine
My dad and I just went through a mandiblectomy and fibula free flap reconstruction two weeks ago. It's so hard to see your parent scared and in pain! I realize this is probably too late to help you, but my dad's nurses gave him nebulizer treatments to loosen up his sucretions so his trach wouldn't get clogged so often. He almost got out of bed once when he thought he was choking and that was terrifying. My dads surgical oncologist said that they typically start radiation between 6 and 10 weeks post surgery. Anything sooner and they worry about the wounds healing. Anything later and they worry about whatever they removed with surgery regrowing. Strength, love and healing to you and your dad.


My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.

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