What do I do with all this STUFF!?

The first day we were home from the hospital, our home health company delivered our first month's worth of supplies.  To say it was overwhelming would have been the understatement of the year.  Now, I consider myself a fairly organized person, but this was just rediculous.  Not only did I have no idea where all of this would fit, I didn't even know what alot of this stuff was!  I brought all the boxes into Dominic's room, emptied them out, re-packed them, moved stuff around in them, moved the boxes themselves around, then left.  I was defeated, just like that.  Luckily for me, I had a nurse there that day who is known for her organizational skills.  She got me started, helped me sort through everything so I could then take over and put everything in a logical place.

The first thing you need to do is organize the supplies into categories that go together.  All tubing connectors go together.  All trachs and ties go together.  G-button supplies go together.  Once all of your stuff is placed in piles, according to function, it is easy to then place these piles in clear plastic bins and the label them.  I bought a label maker, but you could just as easily use paper and a marker.  I have avoided placing lots of unrelated stuff in a big drawer because that's how things get lost, dirty, and forgotten.  These bins can be stacked, or if you have a shelving system, they can be placed there.  I have mine on a metal shelf I bought at Wal Mart online (much cheaper than Container Store) tucked away in his closet.

Dominic has two monitors he is on while he sleeps as well as a nebulizer and a suction machine that ned to be handy at all times.  All this, as well as the meds, diapers, and nurse supplies (gloves, BP cuff, thermometer) goes on a shelf next to his crib.  Only the supplies we use regularly get put out.  Everything else is hidden in neat little bins in the closet or changing table.

All of his trach related supplies are in the top shelf of his changing table, so we can easily access them when we are caring for his trach.  I had old baskets I now use to store socks, hats and burp cloths in the cabinets of the changing table.

I have a calender on the wall made out of differnt colored scrap paper taped to form a blank calender template.  I placed this in a large picture frame so every month I can use a dry erase marker to write all doctors appointments and therapies on it so the nurses know ahead of time what to expect for the day.  I also have a white board to write notes on and important phone numbers for the nurses.  The nurses also have their own chair and table in the room so they have a neat place to put their notes and personal belongings.

The First Programs you Should get on with a SN child

During our 5 week stay in the NICU the social worker never mentioned programs that would qualify Dominic for secondary Medicaid (:/~).  Luckily, I have a friend that knows all about that who came to my rescue.  There are others out there, I know, who don't have the advantage of knowledgeable friends like that though.  There are so many different programs out there for children with special needs, and ways to get a Medicaid backup even if your income exceeds the low standard (A MUST for a medically complicated child... traditional insurance just doesn't cut it!).  Here are some resources to get you started:

You can find all the information on these programs and SO MANY MORE on the website for the Texas department of Aging and Disability (http://www.dads.state.tx.us/).  Here are a few of the most important though to get you started.

MDCP (Medicaly Dependant Children's Program): 1-877-438-5658, http://www.dads.state.tx.us/services/faqs-fact/mdcp.html.  Provides respite hours (private duty nursing or attendant care for medically fragile children.  Also, if you qualify for this, you automatically get Medicaid.  First call and put your child on the list.  If your child qualifies you can by-pass the 8 year waiting list by waiting a few days and then call *&*&*& and ask to speak with the person who is in charge of "Money Follows the Child" program.  They will assign you a case worker and your case worker will help you bypass the waiting list (if your child is severe enough to qualify) and help set up the 24 hour required nursing home stay.

CLASS Interest List:1-877-438-5658
http://www.dads.state.tx.us/services/faqs-fact/class.html.  Provides home/community services like home modifications, nursing, therapies, respite.  Wait list is 10 years... call NOW!

PCS (Personal Care Services): 1-888-276-0702 option #2.  Provides a care giver to help with things that need two people to accomplish, like bathing an older child with a disability.  Even though your child may be small now, call to get on the waiting list so that when you need help, your name might come up.

HIPP (Health Insurance Premium Program): 1-800-440-0493.  A program that will reimburse the family for private health insurance premiums paid out.  I figure this saves the state money by allowing the person's private insurance to pick up a majority of the costs, kind of an incentive for families to keep their private insurance.

I encourage all you parents out there to, as my friend Ashlee says, "Find your voice!"  We have got to fight for our kids, so don't take no for an answer.  There are so many programs out there, for people of ALL incomes that make life with a special child so much more bearable.