Friday, June 8, 2007
Now that you are out of my life, I'm so much better
So, this is the thing. Bayada apparently got sick and tired of everyone questioning and requesting a schedule. Instead of them supplying, they put in a claim that “I” have been denying/ refusing nurses. It didn't take a genius to figure out the lie, though. Why would I be so desperate for a schedule that I'd notify his doctors and write a letter to the company, just to turn around and deny them? Sure having a nurse in your home isn't peaches and cream, but with Tre` being trached and vented, it's necessity. There's errands, Vic's job, and I am going back to school. How or why would I turn the only help I can get away, duh!!!

Basically, they are trying to save their behinds. From what, is a mystery. I'm not familiar with the laws in NJ that would/ should protect families like mine, and it's a shame. Whenever I start asking around, I'm advised to try to find nursing or a daycare that's equipped for my son. Urrrgh! I have a funny feeling about this. Why else would they tell such a weird like, like that? I have too much at stake NOT to have nurses. I even dealt with the wacko for as long as I could. Just doesn't add up.

They never completed the June 8th deadline, either. While talking on the phone with his pulmonologist, I missed a call from Bayada. It was the person responsible for this whole thing. The assistant that creates the schedules. I haven't spoken to her directly in MONTHS. She's always busy or conveniently steps out. Anyway, she left a message on my phone saying that she had a nurse for us and to call when I received the message. I call back, no answer. I called the following day and was utterly surprised that she answered. She said MNOP (the crazy wacko nurse) was just released from the hospital and she will work tonight. Then there was a pause. I'm almost certain that she wanted me to say, “Oh no, she just got out the hospital? No, no, she shouldn't work.” Riiight... I said, “Ok, what time should I expect her.” She choked and stuttered a, “huh?” LOL I repeated myself and she old me 11p to 7a. An actual surprise to me was when I called Vic, while I was on my way back home from K mart. It was around 10p. He said someone from Bayada called and said MNOP was just sent back to the hospital so she won't be in. I couldn't believe it.

So after talking to his pulmonologist about the situation, yet again. He personally informed me that we will have to put him in the hospital for a few days if there's no nursing or daycare. It's a shame I don't have the time to interview nursing agencies because where working on a wire, now. Having wacko made me A LOT more leery. So anyway, I'd have to see if they accept our insurance and/ or waiver and take them. This is soooo not fair. On top of that a lot of the agencies either don't service my area, don't have nurses experienced in trach care, or they don't accept the insurance programs. Urrrgh! I'm supposed to wait for a list after paperwork and/ or referrals are made. That takes how long???

Before I completely lost it I was introduced to a daycare they specializes in trached, tube feed, and disabled kids!!! Yaaaaay wooooohooo. They even have transportation if needed. This is JUST what we needed. I just have to make sure my classes won't run past 4pm. I hope I'm able to check them out today or Monday. From there, will be a home evaluation, standard paperwork, and he's in!!! His therapists can see him there, too. It's fairly new and spaces are already limited so we have to act quickly. That won't be a problem. As an added bonus: (drum roll) we won't need a nursing agency if he has day care. PLUS, he'll get to interact with other kids. AAAAAHHHHHHHHHH I love it. I'm sure his first day will be hard for me but this is just what the doctor ordered...literally.

It's been a rough week but things are starting to look up. Now I have Desiny's Child song in my head...and I'm loving it!
posted by Tre's Mom @ 2:23 AM   2 comments
Monday, June 4, 2007
Breaking Up Is Hard to Do
Here we are the second week in June and we have not received our June schedule. This is actually common so we thought nothing of it.

Last night, while going though mail I realized that we had a letter from the nursing agency. From time to time we do get mail with a claim that they’ve tried to call me but didn’t get through. It’s funny because every other week I have to remind them of my home phone number AND it’s a Vonage account so I can see who called me, who I called, and listen to my voicemail online. Anyway, I opened the envelop and there stood a letter from Bayada stating that after June 8, they can no longer comply with the scheduling contract and they are backing out. Nothing like a break up in a letter! LMAO

I’m kind of mixed up with this one. At first I was elated that I don’t have to listen to a certain nurse make suicidal treats. This was the LAST thing I needed to deal with. My son is one thing but trying to keep a grown woman alive is not/ was not my specialty and I never claimed it to be. So, we were happy that we can have our house together as a family and “take care“ of our son with some normalcy, you know.

It didn’t take me too long to realize how serious this really is. To begin with, who am I to call is something bad happened if Vic is at work and I’m home alone? I don’t believe we have a situation like that in our future but what if? Another thing that bugs me out is, what if Tre` was very sick? Is this something that they do when they have children chronically ill? This isn’t right!

They said that they were giving me until June 8 with them. I have no back up company as of yet. I DO NOT want my son to have to end up in the hospital because of what Bayada did to me. Abandonment? Maybe? I’m worried that this is something they will do again if not before us. Urrrgh!

A copy of the letter was sent to two of his doctors that has ALSO tried to get coverage. We are not to make any changes until things are resolved. I’m so pissed I can’t even update.

posted by Tre's Mom @ 10:46 PM   1 comments
Friday, June 1, 2007
You HAVE to stay home!
We were seen by his ACTUAL Speech Therapist. She seems ok, nothing to get excited about. She couldn't get him to eat a bite. I did warn her that he is extremely strong and determined as I do any new comers even though I know they'd like to test the waters a little. That's not a problem cause they've been warned. In time, I'll need a Beware of Tre` sign up on his kid cart and bedroom door. Too many times nurses tell me how he scratched, hit, or pulled something. I don't think it's intentional, I think he's just having fun and he doesn't realize his strength.

Anyway, ST was in her "getting to know you" stage. She wanted to build trust between him and her before she shoves food in his mouth. They played with the Z-vibe a lot. Like his noonie, he'd only us it if HE puts it in his mouth. If you try to put it in his mouth yourself, it would be a fight to the finish! Since she wasn't getting any success with feeding (she even tried putting dabs on his toys), she asked to see how I've been getting him to eat. We did great. I made eating fun not a choir. We laughed and played the entire time. He gagged only once because he's still not used to the whole thing. He finished his quota in record time. I was given pointers like pressing down on his tongue not up and bringing the spoon to the corner of his mouth. In time, well get it.

I gave pulmonary his weekly report and desite the nursing care they've decided to increase his sprinting by an hour. Can I get a WHAT WHAT!!! LOL That's four hours twice per day. Soon enough he'll be off during the day and only on the vent at night. Before I got too excited she did inform me that if we don't get adequate nursing his trials would have to be done in the hospital. What this means is that he'd have to go BACK to the hospital for a few days. I get upset just thinking of it. I don't want him to go back. He just came home..

What sucks right now is that Tre` is being seen by ST ad PT only. There isn't a DI or OT to follow him. I'm not exactly sure why, either. If ST and/ or PT has time within their session, they'd provide some developmental intervention (DI) or occupational therapy (OT). He gets therapy once a week for each therapist. Is this even right?!?! How is THIS supposed to work if he's this far behind?!?! Urgggh!

Here is a thumbnail (picture) of him taking a bath while off the vent! Yay for Tre`.

Photo Sharing and Video Hosting at Photobucket

posted by Tre's Mom @ 2:49 AM   1 comments
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