Hi Delly, I hope Dad is going ok. He will be quite swollen for some time. Initially from the surgery and then probably from Lymphoedema due to the neck dissection and removal of the lymph nodes. This lymphoedema takes years to subside. Kris's has improved heaps but he still has a small wattle under his chin.
Just keep being there for Dad. Just knowing you are loved is so therapeutic.
Maybe once Dad has recovered he will reconsider getting another pet. We recently got another dog, he responds Beautifully to Kris and his hand signals.
Dad needs time.
Tammy

Is anybody there :(( dont really no who I can talk to my dad is struggling feels his new tongue is to big and also his teeth don't join so feels it's not right x we don't think he can swallow as all his saliva is just sitting in his mouth so the doctors think he can't swallow ? Can this be learned x there's no speech at all only noise and he doesn't open his mouth or breathe through it only his nose but now I'm worried if he gets a cold then what ? So many questions and nobody to ask :(( x

Hi Delly,
It's really early days for your Dad. Kris needed to use a suction machine for the first 3 weeks or so. In the 4th week post surgery he had a barium test to make sure the surgical site was all healed with no leaks. Then he was allowed to start trying to swallow. He started with just a 10 ml syringe of water. He squirted this into his mouth, tipped his head back and swallowed. A Speech Therapist will help him with this. It does require lots of practice and won't happen overnight.
I also think it's too early for clear speech. He will still be very swollen inside with lots of secretions which make it near impossible to speak. Be patient. There really is no reason why he can't speak as he still has his voice box. Just let the swelling subside first.
This is all so new and recent. Dad needs time for all the oedema to resolve. The tongue flap too will be swollen at this time. Kris had hairs on his initially, but that too resolved. Reassure your Dad that all these things will get better with time. Once the swelling goes down , the secretions too will lessen. Kris needs to wash the goo out of his mouth often using fizzy drinks/soda. Other times he physically wipes it out with a tissue. Dad will get used to this and it will get better.
Tammy

Delly, everything you mentioned should be thoroughly discussed with your fathers physician. Your father very recently had his surgery. Every patient is different and will react to things in their own way. What you have described is completely normal. It takes time to recover from such an invasive surgery. If you can talk over your concerns with his doctor Im sure they would be able to explain in greater and more specific detail how your father is doing and have a better idea of the end result after he heals.

As a caregiver its so difficult to watch someone you love struggle. I think OC patients really have it rough being OC treatments affect such critical parts of daily living. Being in the patients shoes I know how hard it is to bounce back. Try staying positive and showing a brave face in front of your dad. Im sure he is upset and very scared as well. Hang in there! In time things will get much better.

Didn't see this post tammy thankyou for reply it just gives me a bit of reassurance just because we don't no what to expect x I've been tonight and he is fed up
He wants to come home but has an infection where his Trac was x he's on antibiotics for it now x he came home for 6 hours yesterday Znd was made up with his house we had decorated it all and got new carpets and setee :)) he did a little dance in the kitchen made me smile from ear to ear xx thankyou all for taking the time to read my posts and reply it means a lot x I have mentioned an animal and I think in another few months he will x I think a dog would be great company as he lives alone x he wrote tonight this tongue just sits at the bottom of his mouth and doesn't even move x but I don't think it aids in much think it was to just fill the gap xx

I love the fact that you've decorated the house and that he did a little dance. You'll all be looking forward to him going home and really enjoying it. Best wishes!!!!

Hi Delly, you are correct. The tongue flap is just to fill the space. It is sewn into the floor of the mouth. It is not connected to anything else. So, it doesn't move and it doesn't taste. The good news is that we have taste"buds" all over our mouths and the roof of the mouth. Kris is still able to taste, although it is not very strong. But he does taste.
I think your Dad is doing great. He will soon be home. How fantastic are you guys to brighten up his home.
Tammy.

Hi everyone just got back from hospital dad hoping to be home tomorro he has his nebuliser ready and just waiting for suction pump x we had a laugh tonight I enjoy going up when we have a laugh x I can tell what his noises mean sometimes as well x I said get on that nebuliser dad and get it all up x he hummed I am going to later ! And I answered and it was like we had a conversation :)) xxx his chest bit better today swelling going down well just one side bit more swollen where the plate in his jaw is x he does all his meds feeds himself and quite independent which is good for when he comes home x he wrote he hopes he has a brew one day I really hope he can x and also wrote in 12 month when I better I hope to go back to work x he was a taxi driver so I'm hoping he can learn to say where are you going clear enough x fingers and toes crossed xx hope your all ok I feel like I've been a bit selfish just asking about my dad and your all taking the time to answer me x thankyou x

Glad to hear your father has been doing a little better. It take time to bounce back from what he has been thru.

When he goes home make sure his intake is high enough so he doesnt lose weight. Every single day shoot for at least 2500 calories and 48-64 oz of water (remember formula is mostly water). Also pick up some high protein whey powder to help speed his healing.

Best wishes with his continued recovery.

We are always here to help, dont hesitate to post. An educated patient and caregiver make the advocates.


PS... Please take some time to review the link I sent with info on how to make a signature. It really is important so we can help you better. Thank you

Hi Christine think I've done it 😁 x I'll update it as he goes through radiation , he's coming home tomorro or Friday depends what day pump turns up but he's defiantly ready to come home , I'm bit worried about him coming home but hes healing really well and using his nebuliser more to clear his chest , face looking good amazing to say he had 14 hour surgery 2 week ago , just feels his chest is tight but his trach hole closing so there's not as much air going up and he also only breathes through his nose he doesn't open his mouth says it's all big and feels there's to much in there but it's going to be very swollen inside and probably feels foreign to him , they've told dad he can't put anything else in his tube but I am keen to give him more calories as he says he loosing weight even though he having 6 drinks 400 cals each a day , is the whey protein a liquid that is high in calories xx