Tracheotomy - again

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Weltschmerz

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Well after 4 months in hospital, 2 of which are post-trach, we are now looking into options for moving on. Unfortunately any international travel (eg to return home to the UK) has been paused due to corona. Here in Belgium it’s either a nursing home or returning home. Only the latter is what my PALS wants, though very tricky while we are both abroad without many friends and family. It is even trickier because the system here is not remotely set up to accommodate home care like this. Caregivers need to be found by “the family” (ie me) and then sent to the hospital for training. All of this looks and sounds very difficult. My question here is more about the prospects/prognostic element of a trach. I haven’t had a clear steer from any medical professionals, and much of the guidance presupposes a PALS does not get to this stage; but I just don’t have a sense of the risk element of a trach. Are things likely to be stable (all relative) or are we looking at lots of potential infection, difficulty etc? So far there seems to be Robinul every 4 hours plus aspiration/suction as required, with cough assist a couple of times per day. Together with basic hygiene etc, the other bit is PEG feeding and water. Lots of possible problems, I imagine - or do people with experience of caring for someone with a trach have other suggestions for things to consider? The only muscles that work well for my PALS are the eyes. Recently an ophthalmologist said even the facial muscles around the mouth and cheeks aren’t working normally. My PALS can’t part her own lips or keep her mouth open properly, so I am quite worried about progression to the eyes. Diagnosis January 2019 with very few issues before then; and intubation January 2020, so this has been a terribly rapid descent.
 

wmilo

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Weltschmerz, I am so sorry that you and your PALS are having to go through this. I can scarcely imagine how difficult it would be to have the medical challenges you described and the anxiety and worry that can accompany them, but also to be stuck away from home. You are doing an amazing job keeping up with the routine that you described and keeping it together for your PALS.
Best wishes,
Bill
 

lgelb

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You may have already seen our member Diane's site where she discusses trach care. I know of no better resource.

Ability to at least blink is preserved in most PALS, but since yours' progression has been fast, I can understand your concern and would try to at least ascertain her wishes should she lose the ability to communicate. I would also explore what research trials testing brain/computer interfaces (BCI) she might be eligible for.

Very sorry that both of you are going through this.

--Laurie
 

Weltschmerz

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Thanks to both of you for these answers. At the moment my PALS is still in hospital and the last few months since the trach have been some of our best times. With a full team working on care, we’ve been able to find moments together to just “be” - something that is very hard when one of the pair is working away. I’ve been trying to ascertain my wife’s wishes for the event of the eye muscles not working, but this hasn’t been something she’s able to fully engage on for now. Interesting point about the trials, though. Thanks.
 

Naturelover

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My daughter has been on a trach since July 2019. She has a little head control, not much, and uses eye gaze technology to speak. Unfortunately, her blinking is weaker, so we are also worried about her losing the ability to communicate at all. Care for someone in her position is extremely time consuming and a bit daunting. I cannot imagine doing it myself without help. I am in the US, and we also have to find our own caregivers for home care. Once she left the hospital, the training has been on us too. She has been stable, ie: no other major illnesses or infections, since about 3 months post trach, and I realize everyone has their own journey. You have this added challenge of being in a different country than your own. Until you can get your wife home, you may need to rely on a care home in order to keep your wife cared for safely. I am so sorry for your very difficult situation!!
 

jonico

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Hi W, Nice hearing from you, even though you are facing some substantial challenges. I can't speak to the whole home vs. nursing home thing in Belgium. Can't imagine being far from home in the UK during Covid times and going through this!

Regarding the trach, I can only recommend you not worry too much about it and take it one day at a time. I can only speak from our experience, at about 5 1/2 years post diagnosis and almost 3 1/2 years post trach and and a little longer with feeding tube. We have had almost no problems with either of them. No problems with the trach area at all, and only a few times where the g-tube area has gotten a little tender and swollen and a dose of antibiotics has quickly solved the problem.

Personally, I wouldn't read too much into the ophthalmologist's assessment of the mouth and cheek area. For as long as I can remember with this damn thing, my wife hasn't been able to open her mouth enough to get a tooth brush in (we use a swab and do our best). Until recently she was gnawing on her tongue on the left side (she finally thought of us putting a rolled drain sponge between her front teeth which has helped tremendously). Still the clenched teeth problem is unsolvable.... but she still smiles beautifully...with her mouth area and especially with her eyes. We worry about the eyes failing at some point, but she is hanging in there so far.

Regarding the other concerns you have, we cough assist and suction her far more often than you are referencing for your wife (more often than once per hour on average), but it always does the trick. It's not a big deal. My wife's progression was pretty quick pre-trach, although not as quick as your's. That being said, it was still pretty quick progression pre-trach, and then much slower decline subsequently (essentially a stabilization). I don't mean to be cavalier, but I strongly suggest continually focusing on one day at a time my friend, and do your best to enjoy every minute you have with your wonderful wife while it lasts. the trach has given you more of that time.
 

Weltschmerz

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Thanks, Jonico. I have managed to come to the same sort of conclusion myself. After a crazy year of progression, we’ve had the benefit of some stability over the last few months. The trach really did allow use to pause time, in a way. Because we are still learning how to cope with the trach while my wife in a hospital setting, perhaps that has also helped. Either way, suction isn’t required nearly as often as I might have thought; and cough assist is twice/day minimum but sometimes the max is only 3 or 4. I will take your advice and keep trying to focus on one day at a time, which really does help.
 
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