Help

xixippy · #1 01-31-2008, 03:32 PM

Hi,

I am a new member and I am desparate for information. My daughter, who is 36 and developmentally disabled, had a trach tube put in on Nov. 28, 2007. It was supposed to be temporary but it looks now like it will be long term. Until Nov. 13th, she was physically doing okay except that she kept getting kidney stones and she did have some oxygen level concerns although at that time she was without oxygen, etc. She has lived at home previous to all of this. Anyway, she needed surgery and I told them she would probably have trouble getting off the breating tube as we had already expierenced that in March of 2007. Well, they couldn't remove the tube and 2 weeks later they gave her a trach. She was moved to a convalescent hosp in early Dec.. She just had an appointment with the Lung Specialist who informed us that he feels it is necessary to leave the tube in in case she needs surgery again in the near future. She is extremely depressed. She wants to come home and of course that is what I want too but we are so unfamiliar with the tube that we don't know what to do. On Feb. 5 they are going to downsize her tube to a small tube, flush with the neck. If anyone has experience with this size of tube, I need to know if she will still need to be suctioned as often (currently a couple times a day). I want to bring her home but I need to work everyday and I am about 30 miles from home so she will basically be alone. Can she suction herself? We are not rich, she has Medi-Cal coverage and is on SSI. So we can't really afford for any in home help. Please let me know what to expect. The nursing home is depressing, scary, etc. I need to get her out of there.:

JWorthington · #2 02-01-2008, 03:19 PM

Hello, and welcome. I'm so sorry your daughter is having to go through this. I have no experience with the type of tube she has, though I have seen pictures of them. I think they are mostly used with adults (my son is only 4). It is possible that your daughter will be able to suction herself, and only twice a day is pretty manageable - our trached kids seem to need a lot more suction than that. If I were you, I would do what I could to learn all I could about her trach care, that way you will be able to bring her home. I can't give you any advice on how to afford things like care, equipment, etc., as we live in the uk and get everything on the National Health Service, which has its limits, but is pretty good, and especially useful for people on a low income as they can still receive good care.
Feel free to ask any more questions that you may have - and definitely read the help pages on this site and take a look at the paediatric message boards, there is a lot of activity and a great deal of support on there. Oh, and welcome - I know you'd probably prefer not to be here - but you will find the best support possible and lots of information here.

Good luck
Julie

Louise D · #3 02-02-2008, 04:31 PM

Hi
We live in So.Calif. and Medi-cal and Cal-optma (for children) pay for my sons nursing and medical supplies hes only 5. Have you talked to the nursing homes medi-cal worker to see whats covered? Or try the hospitals worker. Are there any day homes that she can go to? Just a thought.

Louise

drct1245 · #4 02-02-2008, 05:04 PM

Welcome to the board. I don't have experience with the adult side of the trach world, but just thought I would throw out a suggestion... Do they have anything similar to a day center where she can go for the day and have the assistance she needs, yet still be home with you in the evening. If insurance won't pay for private duty nursing, maybe there is help along that line. They have a medical day care centers around the Denver metro area, but I haven't a clue if they have one for adults. This could also be only temporary while she gets comfortable with everything.

xixippy · #5 02-08-2008, 11:39 AM

Quote:

Originally Posted by drct1245

Welcome to the board. I don't have experience with the adult side of the trach world, but just thought I would throw out a suggestion... Do they have anything similar to a day center where she can go for the day and have the assistance she needs, yet still be home with you in the evening. If insurance won't pay for private duty nursing, maybe there is help along that line. They have a medical day care centers around the Denver metro area, but I haven't a clue if they have one for adults. This could also be only temporary while she gets comfortable with everything.

Thank you for the suggestion. I will look into this, it is a possibility. In the meantime, on early Thursday morning her trach came out and she had a frighting experience of not being able to breath adequately and was in acute respiratory distress, irregular heart beat, etc. They sent her to the acute hospital and they had to intubate her again. This morning they are putting the trach back in and for now she seems stable. I didn't know the trach coul just come out like that. I am so scared to have her at home (the responsibility of it all) and yet that is where I want her to be.