Saturday, October 2, 2010

Your sacrificing my child's emotional well being because of his medical needs ?!?!

  Ever look at someone and think....Man I am so sorry that this is your job.  You think to yourself, this...THIS?!  This cannot be what s/he went to school to become....right?  This person has to know what is right and what is wrong...  How can they sit here and not feel guilty about cashing that paycheck at the end of the week?  I'm so disgusted by them and yet... I want to stare directly into their eyes and give them sympathy.  Tell this person that I am sorry for their loss.  For they lost them self somewhere along their way....

  As I think of what to type I realize it's hard explain in a blog what I want everyone to know.  It's hard to recall everything that happened on one of the worst days of my life.  I know that I was full of anger and desperate to protect my son.  I was angry that everything I said or asked that day was brushed off.  They looked at me as if I was some crazed overprotective mother.  Looked at me as if I was exaggerating my son's medical and emotional needs.  I'm just a mother like any other,just wanting the best possible care that their child deserves.
  The meeting was held at Kellogg Marsh, in the school psychiatrist's office, the conference room's phone wasn't cooperating so we had to move.  In attendance were myself, my attorney, the school psychiatrist, Ethan's speech therapist, Ethan's special education teacher, the school district's current Director of Special Education, the Special Education Director for the next school year, the school district's nurse, the principal for Marshall elementary and the school district's attorney on speaker phone.  
  We all introduced our selves and then the special education director for the next school year started by asking the district nurse for a history of Ethan.   Yeah I'm sitting right there listening to her give a history of my son.  I listen while this person reads and tries to pad a paragraph printed at the top of my son's IEP.  The info she read may have been from his plan of care, anyways she did awful.  She turned everything around to sound as if it's a wonder he still has a trach.  She stated that he was allowed to walk school grounds nurse free and that recently they had pulled back on some care.  Meaning that she was explaining to them that since Ethan was so "healthy" he needed minimal nursing and that they had even started implementing it!!!   I'm in literal shock yet I keep my silence and I wait my turn. My attorney is by my side and he would have spoken up already if it was needed.  I follow his lead.   After she goes on a little more and the directors of special education ask her some more questions she looks at me; she states " oh well mom might know a little more about that..."    At the time I was afraid I'd cracked a molar, I was that angry.  YOU THINK I MIGHT KNOW MORE?!?!  YOU HAVE NO IDEA HOW MUCH MORE I KNOW!! -again I didn't really say that.   I first answered their question.  It was about emergency trach care and what we do during an emergency.   I then let it be known that I was unaware of what the district nurse had stated.  I told them that I was not told of this new care plan?  I asked them "When did I give the consent to 'pull back' on his nurse?!"  I was unaware my son was allowed to wander school grounds unaccompanied by his nurse.  I was unaware that our nursing agency had received orders to do so!  Nothing.....this was their response.
   The meeting was to hear about how they were going to meet Ethan's needs without his usual nurse and without using an agency.  It was to hear them explain why they wanted to move him yet again.  I thought in this meeting they would tell me their "plan".  It didn't go this way at all.  It was more like a meeting where "they"- the district- make it up as they discuss it and ask you for your input, yet again they disregard all of it. GRRRRR!  I listen to the district nurse give the special education directors a rough idea about having an RN at Marshall. She says the RN will be available for Ethan when he needs suctioning and what not.  She said they could schedule times for her to do vitals as well.  They'll have the nurse on the bus; possibility during lunch and recess  She says that all of this would be easier to plan if they had some more recent records and stated that Children's had yet to send her the "paperwork". 
  While she bad mouthed Children's Hospital and our home care agency, I kept asking myself; "Who is she?" "Who the hell is she?"  "She is sitting here whining about Children's and how they are not getting back to her!! Geez, I'm sorry they are busy saving lives!!  It's what they do!"  "Did she not listen to my attorney introduce himself?  Did she not catch the part where he works with Children's?"   I speak up, "So since you have not gotten the "paperwork" you need you are going to just make up a care plan??!!"  Silence yet again!!  Why am I not surprised!!
  So I can't remember every exact detail of the meeting but what I do remember is:
  "We are having to do this because your home care agency is not making themselves available for us next year"
  "Since we have yet to get a response from Children's we have to do what's best for Ethan..."
  "He's not a normal kid with a trach....he coughs out his secretions so he doesn't require suctioning"
  "We are working on getting the school nurse at Marshall on full time" 
  "Your home care agency is not reliable"  -District Nurse

  "It seems you were moved from Marshall to Kellogg Marsh because it was your 'home school'"
  "This school(Marshall) is where are medical needs kids are"
  "This(Marshall) is where he needs to be"
  "We don't have the nursing he needs at Kellogg Marsh"
  "So we will look forward to Ethan being at Marshall next year"  -District Special Education Directors

  "At Marshall he will be with students like him"
  "At Marshall all our teachers are trained to know what to look for in an (medical)emergency"
  "...we have the therapy pool and ..." 
  "We are Marshall"  -Principal of Marshall

  "My son's history proves that health and growth are unpredictable, he needs a nurse with him"
  "My son just had another sleep study proving that his airway thrives on his trach"
  "You are welcome take this review I have from Children's and copy it"(two days prior to the meeting I'd received a team summary of Ethan's last clinics and sleep study, I was explaining to the nurse I was not keeping records from her).
  "So what if our funding was cut-off, it's the school responsibility to provide a nurse, just ask DSHS or DDD"
  "You say the nurse you are to provide will be more reliable, yet this same nurse was at the school when I quit my job so Ethan could go to preschool!  Where were you then?"
  "You can't make up your own plan of care, when you yourself had to be trained in class on trach care by our home care nurse"(said to the district nurse)  -Me

My personal favorite; it's the less blunt version of what my husband calls "Pick which kid dies":
  "At home is Ethan under constant supervision?"-Special Education Director  "Well he is allowed to play out front with friends riding bikes or in their front yards; everyone in the neighbor is well aware of his needs and has my number."  "Ethan is usually out and about with his older brothers as well one of which has a cell" -Me  "So what's the difference between what's at home and having the nurse in the school only when he needs her?" -Special Education Director  "The difference is that when my son needs me I come running and it usually works to where whoever is with him is running to me so we sometimes meet in the middle."  "Unlike the nurse I will never be busy tending to another medically needy child, my son will never have to wait for care"  "Also if you plan on just having the one nurse, say she gets busy with Ethan and another medically needy kiddo in the school needs her at the same time, you are taking care away from that child and/or making s/he wait." -Me

  The unanswered questions asked by myself and my attorney:

  "So what my client would like to know is, what is the level of care that you are going to provide at Marshall?"
  "Can you do this? Just make up care as to what you feel is best? are a school not a doctor"
  "You don't have a care plan and are moving him anyways?"
  "You are just going break down my son's emotional well being?"
  "Are the nurses trained to do trach care?"
  "What's the ratio of kids(with medical needs) to nurses?"
  "If you provide the bus how long will the ride be?"

  More things were asked and discussed here and there.  At one point we had to double check to see if the School District's attorney was still on speaker since he'd been silent during the whole meeting.  When my attorney and I left he whispered to me "Is it me or does it seem like they are moving Ethan or else"...Me- "Yup, I got that loud and clear"  Outside we discussed what to do next and he informed me what a due process was.  My attorney said we have some strong suits and weaker ones, yet we will fight this. We agreed to collect as much info from Ethan's doctors and specialists. He informed that he would be updating our social worker at Children's as well.  I told him that as soon as I get home I will be calling to verify whether or not our home care nursing agency was "available" to provide care for next year.(it seemed untrue to me)  We both agreed they have nothing that really supports this nursing change.  He explained to me that school districts have to provide medical/specials needs, but that they are allowed to move them to provide such needs....:(  I already understood this from my research but it stung a little hearing it aloud.
   When I got home I updated the family on everything said in the meeting.  We all had a good chuckle about Marshall's therapy pool, cause that's really what a trached kid needs!!!!  We were all angered by the comment about Ethan being with kids "like" him.  This offends us because we hate that they can move/segregate these medically needy kids whenever and however many times they want, then just blanket their nursing care!!
   After updating them and getting their much needed encouragement I had work to do.  I will fight this move and collect statements from docs and specialists that will state why they can't provide such a low level of nursing care. It scares me to think of how many families they have done this to and are doing this to.  They are taking these medical needs WAY TOO LIGHTLY!  I feel that in order for them to realize this something bad will have to happen.  It needs to change...