Re: Chaya is scheduled for a tracheostomy tomorrow

March 9, 2004

Just wanted to say good luck, , you and your family are in our thoughts

and prayers! Once you get home everything will work its self out

March 10, 2004

Rochel,

Like everyone else, I am so sorry that this keeps getting more complicated for

you and and the rest of your family. I do so hope it sorts itself out for

the best. Will be thinking of you.

pam

March 10, 2004

Having nurses invade your space is not pleasant. However, the alternative is

going insane from no sleep. We did not know to request nursing care when we

left the hospital. Aubrie was on a 2-hour feeding schedule. I would pump my

breastmilk, feed it to her slowly via her tube, then watch for her to vomit and

need my help. The process took about 2 hours! Then it was time to start again.

And this is round the clock! I knew I truly couldn't handle it when I woke up

one morning with Aubrie's wet diaper in my bed, and one night either I never

woke up to give her her heart meds or I gave her 2 doses. I can't recall but it

was something really crazy. I was just so exhausted that I couldn't handle the

night care. After a letter-writing campaign, we finally got 2 nights/week of

nursing care. It wasn't great, but it helped. Looking back, I would have

refused to take her home without adequate support already in place.

Again, it's all temporary. You'll manage even if you don't like it and it's not

the perfect set-up as far as the floorplan and all. You'll figure it out.

Michele

is scheduled for a tracheostomy tomorrow

Hi,

Hopefully we are making the right decision. I think so. I feel

pretty comfortable with it now.

The thing we are mainly concerned about now is the 24/7

supervision. The floorplan of our house is not so well thought

out. You can see into the master bedroom from the living room,

which is the only possible place we can put if someone is

going to be taking care of her at night. This can be pretty awkward

if our kids come into our room in the middle of the night and forget

to close the door. We used to have boarders in our house and it

drove me absolutely nuts. I already know what it's like to lose the

privacy in my home, and I'm not looking forward to that again, but

we'll do whatever we have to. I asked the pulmonologist if she

thought the 24/7 care would be necessary since she would not be an

obligate trach breather. She said that if she is having a lot of

secretions she might need a lot of suctioning. Then I was thinking

even if she doesn't have her own secretions, wouldn't the humidity

condense and require suctioning? Ugh, oh well. We'll see. I guess

it's just one of those things I'll need to experience first to see

what it will be like because everyone's situation is different.

Rochel

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March 10, 2004

Rochel,

19 years ago when was trached we didn't have home nursing care. I was

exhausted most of the time but I did survive. was 6 mo. old. It was a

good thing. She did much better. She had a very tiny cry before the trach and no

sound at all after for 6 to 8 mo. A nurse suggested putting bells on her

ankles so I would know when she was awake.( Once she could pull them off it

didn't work) Baby monitors didn't exist then so this was a big help. Just a

trick that might not be mentioned.

It will be and adjustment for you but you will fall into a routine and it

does become second nature. was house bound from Oct. to March because it

seemed like every time I took her out she got sick. As others have mentioned,

big brother washed when he came home from school. Visitors washed and we

screened carefully for illness. Her trach came out at 3 1/2 years and the stoma

was closed at age 4 . She has had pneumonia and still gets bronchits but

antibiotics and aerosols work well.

You will be in my prayers. People on the list with trached kids will be far

more help than my 19 year old experience.

Lynn

Ohio