Ever had that conversation where you swear the person you are talking to has a list of questions they are obligated to ask and could care less about your answers? They ask 'How do you feel about this' or 'What are your thoughts on this'....you voice your concerns and you pour your heart out.... Then they TELL you what THEY are going to do, which has nothing to do with what you said or it's completely opposite of "your thoughts"! Why the F**K did you even ask!!
This is such a joy when it involves you or your family. No really I love turning that lovely shade of red when I am furious because no one is listening to me!!
So after hearing about how they were planning to move the boys and that they were getting rid of our nurse, I raced home. I knew that when I called to share this news with my husband and my mom that it had be when the kiddos couldn't hear. I shared what our nurse had told me and that her 'source' was upset that this was due to a funding issue. The anonymous source also felt that it wasn't right to be planning all of this behind the families backs and wanted our nurse to tell us moms. After chatting with the husband and my mom, I grabbed an envelope of paperwork that my father in law gave me a while ago and got to reading.
Remember when I told you about how I left my job so Ethan could continue to attend preschool(in my second post)? Well my father in law didn't like any of that and was angry that the school wasn't more involved in providing the nurse while Ethan was in school. He would know more about this then I, you see my father in law has been on his town's school board now for over 17yrs. He lives just 20mins to the east of us, so both of our schools are in the same county. He sees and hears a lot from the school district his grandsons are in and thought he'd look up some information on school rules for medically needy kiddos. My father in law remembered the info he looked up when Ethan missed over a week in first grade(in my 3rd post) and gave me the envelope. I read over the paperwork lightly and tucked it away until now.
I needed more info on trached kiddos in the school setting, so I went online to search for some. What I found was basically the same as in the paperwork and it was so frustrating! In the papers my father in law provided they were mainly about the DSHS billing instructions for the school. Although in one stapled bundle there was info about the "...Delivery of School Health Services" which is a summary of rules and care guidelines collected from Washington State Nursing Care Assurance Commission and the Washington State Office of Superintendent of Public Instruction. When reading through this my confusion started, I only read the word 'tracheostomy' twice and that built into anger when I couldn't find what should be in the rules or care guidelines.
You see when your a parent of a special needs kiddo you learn everything about anything that involves the care of that kiddo and over time you become a specialist. I did my trach care training at Children's and in the last 7yrs I have as much experience as a Certified RT. I have cared for my son before, during and after over 16 surgical procedures I have as much experience as an RN or LPN. I am a specialist in all things Ethan. I understand the importance of trach care and why I have been trained so intently, I've never questioned why. It's obvious why you do it according to the rules and guidelines, it's his airway. So imagine my shock to find that in a public school setting there are literally no rules or guidelines for trach care!! Yup no specific rules to follow while taking care of a trached kiddo. He'd be cared for according to rules if say he had a catheter, needed insulin, or if he needed tube feedings in class, they have those guidelines. Another shocking thing is that it didn't state who did this care...was it the school nurse? Is said nurse an LPN? An RN? Who is doing these tasks?
In December 2003 the discharge nurse for Children's explained to me about what to expect with home care, she stated that an LPN or an RN would be sent to the home. From this I learned that outside our trained family members, trach care has to be performed by an LPN or RN unless say it's an RT or a doctor, but they don't work for home nursing care agencies....well at least I've never heard of one doing so:) Those nurses would do there training here while he was still inpatient and that later others would train at our home or at Children's(trach care isn't taught to every nurse learning to become one). I also learned that these nurses have to follow orders, they can't do things unless they have signed doctor's orders. So I am really just more confused by how the school can take away my son's nurse. His orders state he needs a nurse! I decide my plan just has to wait till they contact me and until I get more information on what they are planning to do.
I think it was two weeks later when I got a tid-bit more info. So on a Friday I received a call from the school district's nurse. She was calling to see if I'd put a stop on any release's from Children's, she was concerned because she was having trouble getting Ethan's recent medical records. I told her no I had not and asked her what are you needing to know... She then told me "we are just trying to see if Ethan really needs his trach or not"..."and I just can't seem to get anyone to call me back from Children's", "I sent them some paperwork and it hasn't been answered"..."we are just trying to figure out whether or not he even needs the nurse"..."we are just trying to figure out a new system since you know... DSHS has stopped programs and cut back so much funding for schools and we can't afford to use the agency nurses"..."he was at Marshall before and the nurse there knows him"..."Well what are your feelings on this?"..."Do you think he needs a nurse?"..... - I am serious, she rambled like this then asked me for my input.....
THIS IS THE WAY YOU ARE TELLING ME ABOUT YOUR PLAN?!?! YOU CALL ME ASKING IF I STOPPED YOUR RELEASE FORMS?!?! DID YOU JUST F**KING ASK ME IF MY SON NEEDED HIS TRACH?!?!! NO YOU DUMB COW WE LEAVE IT IN AS AN ACCESSORY!!!!!-
No I did not say these things aloud...but I did tell her, "Ethan absolutely needs his trach he wouldn't have one if he didn't need one and he needs his nurse because he has a trach"..."Ethan's has a very large team at Children's so maybe his doc is waiting for the all of the team's input before she responds"..."larger the team always means a little longer wait"..."no I do not want him moved back to Marshall"..."after what we went through with the last move", "I do not want to relive the emotional roller coaster my family rode for almost a year"....I then gave her the number I call and the name of the nurse I talk to when I need something from Ethan's team. The school district's nurse than told me that there wasn't a definite plan yet and that they need more information from Children's before they decide on what to do for next school year. Now I was even more confused and mad!!
After I hung up with the "dumb cow" I called our social worker at Children's. I left her a message about how the school was changing things and how they asked for my input yet it sounds like they will be deciding things without me. About ten minutes later our social worker called me back and she informed me of the "papers" Ethan's doc was sent. It seems school districts like to get doctors to sign off on "a no nurse request forms"....well i don't know what they call them but what they do is send requests for a different level of care, the school district didn't think Ethan needed a "line of sight" nurse. They were asking if Ethan's craniofacial doc would sign off on the change. Well Ethan's craniofacial doc shared the "papers" with the team during a meeting and asked if she could even sign the request....my social worker told her not to sign it and that what the school district was requesting has been an ongoing issue for other families.
My social worker then referred me to an attorney. An attorney that works with Children's Hospital and specializes in dealing with school districts...
I blog to advocate for my son and others like him. My family has been unable to escape an awful experience. One we never want to relive, but are learning so much from. We are fighting a School District; getting them to provide special medical needs for my son. My mission; Limit how many times a School District can move a child and the care guidelines that public schools follow for medically needy kiddos needs to be regulated. Thanks for your interest in our daily life and my mission.
