Discharge date!

[abby]

Congrats on your discharge date! IT sounds as if she is doing great coming home with no vent and room air!!
There are some great tips on the main part of the website on setups for rooms, etc. As far as cleaning goes, we did the carpet cleaning and all that too but Jared seemed to adjust fine to home life in that respect.
I do suggest taking stock in purell though!!!
Good luck

[cariaad]

I'd suggest removing all scented candles and potpourri (sp) until you know how she will respond to smells. Alli had a horrible time with anything scented until she was almost 2, at which time she just seemed to be able to handle it. I couldnt even change my perfume or shampoo for that time! Now as I said she handles smells and odors just fine. Also, I'd remove any aerosol type spray products as they diffuse into the air. If they're out of the house you wont forget and spray something accidentally and then have to worry if it's going to cause a reaction. Good luck with the nursing, no advice there as we didnt get any. Deb

[Jacks Mum]

Yay, You have a discharge date, Its is the best feeling, I am sure you are very anxious!

for disinfecting, i make up my own, tea tree oil (lots of it!) bicarb soda and lemon (squeezed) this is a safe natural way to clean, Since I have had children, I dont like using any poisonous products, also a steam cleaner is good as well.
If you have kids that crawl it is especially perfect for this as any sort of poisonous residue from bleaches etc cannot come in contact with them.
I also must add, I have alcohol for emergencies when we have nasties floating around the house.. but that is as far as I go.

Jess
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[Karen S.]

What wonderful news to have a discharge date set for Marisa.

As far as nursing goes, we had a discharge meeting set up at the hospital by our case manager with all her doctors, nursing agency, etc. At this time, we discussed her care at home, the amount of nursing hours needed (due to work schedules) and what was expected from all parties involved. The director of my nursing agency was wonderful. She got authorization from the insurance company before hand and came to the meeting fully prepared. She already had our first 2 weeks of 24/7 nursing care covered (dependant on the discharge date not changing...which unfortunately, it did). Between the hopsital staff, nursing agency and doctors, I never called my insurance company for the first year. They took care of all authorizations, etc. This was a blessing, because I had a million other things on my mind at the time. Besides a few set backs, it all worked out.

We too had our carpets cleaned. I also just cleaned with regular cleaning products (Lysol, etc.) a few days before Hannah came home. Now, 3 years later, I still use the same cleaning techniques. I also dust and vaccuum on a daily basis (with a toddler and a puppy, I don't have a choice).

Keep us posted on Marisa's discharge. I wish you the best of luck.

Karen

[Laurie]

Congratulations on getting a discharge date set!

Regarding nursing hours - I recommend you get as many as possible, and then cut back if you want to. As others have said, it is easier to cut down than ask for more. Make sure you set a schedule that allows you time as a family without the nurses present. We basically have nursing care during working hours and sleeping hours during the week, and don't use nursing on Saturday and have a six hour Sunday day shift - all so we can spend some family time. Our nurses are wonderfully helpful, but I really need to have the house and Evan to myself at least a little each day.

You will be in charge of Marisa'a care when you get home, so get used to the fact that you will be instructing the nurses on how to care for her. Make sure you spend significant time at home with the nurse (like several days) before allowing the nurse to be alone with Marisa, just to make sure everyone is comfortable. Ask the nurses about their comfort and ability to handle emergency procedures - have they been trained to use the bag, do they know how to turn on the emergency O2 tank, have they been trained to change a trach, do they know what to do if a trach is plugged, do they know the symptoms of a plugged trach. Of course you would assume they know these things, but I have had more than one nurse who DID NOT KNOW one or more of these things. I didn't fire them - I trained them, and many of them worked out great.

Also, don't be afraid to be clear about your expectations about their care of Marisa and what they do in your home. Explain where you want them to put their things, what kinds of activities they should do with Marisa, what/how to feed her, napping, everything. When things are clearly spelled out, I find the nurses often do very good work. If you are not clear, they start improvising, and that has variable results.

I could go on and on, but a lot of this has to be learned as you experience it. I am thrilled to hear that she is on her way home. Let us know if you have more questions.