Thursday, May 23, 2013

Pet Peeves of a CCHS Mom

 (According to Webster's Dictionary a pet peeve is a "frequent subject of complaint").  Sorry for the negativity, but here are a few of the aggravating things that happen in the special needs community.

1.  Refusal of services--When Noah was an infant he received the RSV shot.  This shot helps prevent the spread of the breathing virus RSV.  Imagine a ventilated, trached child getting RSV.  Not pretty.  When he turned one, I called about getting the shot again.  We were denied.  They said he was too old.  Regardless of the doctors orders, or the fact that he has a trach and ventilator plus was one month premature, we were still denied.  I still can't figure out how that was logical.  Another refusal of a service was for nursing in the home.  Our insurance did not cover this even though Noah was coming home with a trach and a vent. 

2.  Back ordered supplies--It is rare that we receive all of our supplies every month at the same time.  Something is always back ordered.  Usually, its the trachs but this month it was water bags and bacteria filters.  I can't understand how the DME does not have extras of this stuff.  Our supplies do not change.

3.  Number of supplies we receive--We are allowed 2 trachs a month yet we change the trach once a week.  That means we are suppose to sterilize the trach as best we can and reuse.  I do not like doing this but we really have no choice.  Everything we receive says "for single use only".  Noah gets one (yes one) trach cap a month.  He wears them every day all day (except for sleeping).  How can it be single use?  I realize that we are in better shape than a lot of SN moms.  I have heard that someone only got one trach every 6 months!  Another mom only gets 15 suction catheters a month.  These are also suppose to be single use.  It really doesn't make much sense.  Noah wears his pulse ox probe every time he sleeps.  We are allowed 2 a month.  These small probes secure to the finger or toe using a sticky cloth tape.  The tape is useless after two uses so we have to use medical tape to adhere the probe to the skin.  We use these until they are literally falling apart. 

4.  Appointments--As a SN mom, we have a lot of appointments.  For some reason, they want to make them all at 8 in the morning.  I have two other children who do not leave until 7:15.  I have a ventilator, suction machine, and go bag to pack up and load in the car.  Not to mention doing all of this after being up 4 times for ventilator alarms. They always have vent clinic at 1 or 2 in the afternoon because we have to have clinic in the sleep lab since the home vent team doesn't have their own area in the hospital.  This is better than 8 am, however it is right in the middle of nap.

5.  Missed appointments--Probably my biggest pet peeve is the missed appointments.  We have 3 people coming to the house every month (previously we had 6).  At first, they would call at the last minute and say that they HAD to come to the house in order to get the paper work done.  The DME even came one time unannounced.  Luckily, I had just pulled in to the driveway.  They quickly learned that this was not going to work with us.  Unlike many of their other patients, we do get out and go places and some weeks we are rarely home.  I have to make appointments to see people so why shouldn't they?  I can't tell you how many times I have been sitting at home waiting for someone to show and it doesn't happen.  I get all kinds of excuses, mostly that they got tied up doing paperwork. Sometimes they call to cancel (usually an hour or two after they were suppose to be here) but mostly they do not.  I have learned to not change my schedule.  If they are not here in their allotted time and I have to leave, then I do.  Recently, I was sitting in the auditorium watching my daughter's award ceremony at school when I got a call from my mother in law.  I sent it to voicemail.  She then texts me and says the caseworker is on her way to my house.  When they couldn't reach me on the phone, they called her.  I had spoken with them earlier and told them it would have to be after 3:00 when they made their visit.  I looked at the time and it was 1:30.  I'm not sure why they think they can just show up whenever they want.  It's so frustrating. 

6.  The phrase:  "He looks so normal"--Maybe that's because he IS NORMAL!!  He's just like everyone else, only he has a trach and a vent.  

7. The phrase:  "I'm so sorry" when someone learns that he has a trach and a vent.   I'm not sorry.  He's alive and well.  To me, that's a blessing.

8.  Know it all doctors--There has only been one time that I have had a doctor say that they are the experts.  Noah's team of specialists have always treated me with respect and we work as a team. To these doctors I say " I don't care how long you went to school or how much education you have, you do not have to deal with CCHS every day (in fact, you can probably count on one hand the number of CCHS patients you have seen).  I am sure you have not spent nearly the amount of time that I have spent researching and talking to other parents of CCHS children. You may be the expert in your field, but you are NOT an expert in CCHS. "  The refusal of these doctors to listen to us parents is ridiculous.  We live this every day and know our child better than anyone. 

9.  Caseworkers--This goes along with number 5 above.  The very first caseworker that we had came out to the house, looked at Noah and informed me that he might be cold with the ceiling fan blowing.  I knew then that I was in for a long, frustrating time with these people. 
Our 3rd caseworker was nice but had no clue.  She missed several appointments.  The first time I met her she asked me if Noah could go outside!!  I was seriously speechless for a moment.  Did she think we kept him in the house, never to leave?  Another time, she was getting the paperwork together for him to be reviewed for another year of services.  She asked all kinds of questions, which was fine but then made the comment that the nurses reviewing the information would know all about CCHS.  I informed her that the doctors didn't even know about CCHS and I was absolutely certain that the medicaid nurses would have no clue since it is so rare.  She seemed surprised at my answer, then proceeded to call me 5 times in one day because those nurses had questions. We are now on our 4th caseworker in 3 years.  

10.  Lack of information/research-- Having a rare disease means there is not a lot of research out there.  Doctors want case studies and journal articles to back up our reasons for doing things but there are very few or even none out there.  It makes it even more difficult because there are different mutation levels and different modes of ventilation that have to be researched.