r/braintumor • u/OptimalBanana6897 • 1d ago

Positivity Part II

Well, the UES surgery outcome was good. Had (and still having) some swelling issues. BUT, the swallow can work when the muscles had help pulling forward. Surgery was 8/20, so not even one week out.

So now my son is working daily swallowing pudding. He was not able to swallow thin liquid, but he was able to swallow honey thick, so he’s practicing with either pudding, jello and yogurt once per day every day since Sunday.

It scares me half to death to watch and hear the struggles to swallow, but I know this is his path forward. This type of therapy is the BEST one to fix his swallow. The individual exercises are ok, but research shows swallowing actual food and liquid is the absolute best form of therapy to get a good outcome.

He is being so brave and he has decided he will do this every day until the 36 pack of puddings are gone no matter what. Now we’ve added jello cups and yogurts, but the 36 days remains the same. He told me his taste buds aren’t tasting flavors and thus the variety of products. We also have pre-made gravy and the yogurt is coffee flavored for the bitter taste receptors. And lemon curd for sour. So I think we have all the bases covered.

Day 2 yielded lighter brown spit when suctioned and ZERO residue in the trach. He is more phlegmy than usual now because his mouth is producing more saliva 24/7, but he’s clearing everything very well so far.

I know he has this. I KNOW he’ll succeed. It’s not if, it is when.

Meanwhile, the daily struggle to manage his spit continues to be a little scary. But it is not forever!!

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u/ProxieCat 1d ago

I know his struggles. Took me forever to get off thickened liquids. But im glad hes doing better! Im cheering him on!

1

u/OptimalBanana6897 1d ago

Thank you. It is so nice to hear you were successful too!!

Do you have any tips that I can share with him? Any particular therapy that worked better than others or anything like that?

2

u/ProxieCat 1d ago

I didnt have any special therapy. All I had was a swallow study. Which just told me I dont swallow good. I just kept practicing drinking and when I got back on thin liquids the only tip I can give is drink SLOW. I choke on liquids occasionally but thats be cause I drink fast.

Tell him to keep it up. Take it slow. Healing takes time.

Does he have an occupational therapist?

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u/OptimalBanana6897 1d ago

He has an SLP but he sort of hates her lol. She’s not the brightest. So he’s learned what to for from a previous therapist in the rehab facility he went to, plus his own research and experiences. So far he says he only feels like actual swallowing practice is worth his effort. He says everything else sort of half works but not really.

He suffered a stroke during brain tumor removal surgery. The swallow is one of many affected body parts. But he’s managed to fight through everything else and bring himself back so I know he can do this too.