I have been known to spontaneously burst into tears in the last couple of days. For those of you who know me personally, you understand that I am not a crier. Same old stuff, just compounded.
I eluded to having nursing struggles in the Labor Day post, but that is just the tip of the iceberg. I try to usually be light and humorous around here and still be honest. I'm not sure if sarcasm can cover up the pain right now. I think I have written this post three times, just different ways and it still just sounds depressing. I do know that I will cowboy up, pick myself up off the ground, dust myself off and start over. It's just my nature. Still, this post is a downer. I also go frequently in and out of past and present tense and first and third person...I really shouldn't be let out into public, let alone blog :) Forgive my grammatical errors. I done did grow up in the country.
Reader's Digest version-School said, "you can't bring a nurse here that doesn't have a contract with the county". They can not even be on school property. So, I have been attending school, 5 days a week. Cole can't ride the bus anymore (remember it is his favorite part).
Also, as a random insert, I have a 4 year old that has a major crush on me. He is my little shadow. He saw me the other day and couldn't wait to introduce me to his mom, who informed me that he talks non-stop about "Cole's Mother". Kinda cute, kinda creepy. Back to business. After many, many instances where things just weren't "right", I made the decision to switch agencies. It was a long and complicated road to get to this decision, but I felt like it was time for a change. We decided to terminate another couple of nurses, and things were not getting better, so we ended our relationship with the first agency.
So, I went agency shopping. I threw out an S.O.S. to a local and asked for insider information. My connection suggested an agency that they had been with for an extended period of time. It seemed like the perfect fit. We signed up. This is clear back at the beginning of the month. They start putting a schedule together, we do paperwork, etc. I like them! In the meantime, I am still attending school with Cole. The medical review board has not reconvened. I think that it will all be smoothed out, as I had been reassured in a meeting in APRIL that they have done outside contracts with plenty of other students, you just have to do a little more paperwork and prove that the child needs continuity of care. Paperwork doesn't scare me if it will get me what I want. So I proceed with the new agency, even though they do not have a contract with the school district.
In between all of this, there has been some miscommunication about whether or not we
can actually have a contract formed with the school to have an outside agency nurse attend with Cole. Some say it's possible, others say
no way. Switching was a bad move. I attended the Medical Review Board meeting, that had been re-scheduled twice, and found that under NO circumstances, was I going to be able to have a nurse, that did not have a contract with the school district already, allowed to go to school with Cole. Okay, this is news to me! We are stuck between a rock and a hard,
hard place. They want me to fire my new agency and go with the one they have chosen
for me. Which would you do? Pick a name of a doctor off of a list, because it sounds nice...or go with the recommendation of a friend that has been seeing the doctor for years. Yeah, I thought so. I did not want to "compromise". I was being pigeon holed by bureaucracy.
I came home from that meeting feeling so defeated. If someone would have told me 4 months ago when we started talking about this that there was no other way, I could have made the change myself and spared a lot of this. We were back to my original fear-Cole was going to have one nurse for 2 hours when he woke up, another for 3 hours at school and another when he got home. Plus, who knew going to pre-school would be so exhausting? Cole comes home, has lots of clusters, and crashes from exhaustion. I want to do the same, but my brain is clicking in overdrive. He has even had two long seizures at school that his teachers have witnessed. A whole bunch of new people every day would add to this.
I knew that it was not going to be easy when we embarked on this new adventure, and it has not been. I actually had more stress with nurses around than without, just a different kind of stress. Hopefully, we can get to the point where they ease a burden and don't create one. I have not had a nurse since the 7th. It's funny how fast I came to rely on another person to be the eyes and ears. Our new insurance is great, but I spend over 20 hours a week on the phone just trying to work stuff out. I never had to do that with our previous provider. I also am spending a lot more time on stuff like school, applying for grants and meetings, which were not a part of our life in Utah. Oh, add fundraising to that. I could do it all before, even if I was burned out. Now, it's just barely hanging on by the skin of my teeth. If I don't have someone else around, I have no choice but to be with Cole. Everything else gets put in a pile and I don't get to it in a timely manner.
Niki cues her OCD recessive gene and goes ca-razay! As much as I don't want to baby-sit another nurse and go through all of the training, again, I need to. I really need the help.
Long story short (seriously, this is still the Reader's Digest version), we had to switch agencies again. After many phone calls, many sleepless nights and many, many moments where I just wanted to break down crying. This is the agency that I was forced to choose through the school district and they can also provide nursing for respite and skilled. One agency, the whole thing. Getting there was just exhausting. I think they are going to work out. They start bringing nurses in tomorrow -cue soundtrack for life, Hallelujah Chorus. However, just because the agency seems great, doesn't mean that we will hit it out of the park on the first try. There is still going to be growing pains.
Also, during all of this, I was solo with Cole for a good chunk of time. Brian was out of town for a week and then was hosting a very important conference the week after he got home, making it almost like he was still out of town. I had someone close to me who passed away and that was hard to not be with my family. Cole got sick and missed a week of school, we had company, we've been doing some major medication changes (more on that later). Then I got sick. It is only by divine intervention that I did not have a seizure or a psychotic breakdown. Remember stress, no sleep, poor eating and illness = not so good for Niki? I pulled through. Angels, seriously. It has been 1 step forward, 3 steps back all month and I am not hospitalized. Total miracle. Although a padded room sounds lovely right about now :)
This was EXACTLY what I needed to hear in the midst of all of this chaos. I am not forgotten. Sorry to get spiritual on here, but this is a message directed specifically to women in
our church. Listen to it. It gave me comfort, hope and reassurance that even though I am not perfect...I can find joy. I don't need a golden ticket. I can find triumph in the little things. I need to be patient with myself and not take myself so seriously. As long as I am giving a good effort, it is enough. I also need to remember that the sacrifices I am making are good ones. I can find wonder and delight in even the tiniest journey or success. My time and energy has to go to this right now. Cole is worth it. He really is. I am thankful that I have my beliefs to help me through dark and trying times.
There has been good stuff this month like a Brazilian blow out keratin treatment (life changing!), spending some time with my parents, taking Cole to the zoo again and other stuff. I am not a
total Negative Nelly. Oh, and the school just told me in another meeting today that they are not allowing the dog. Bet you can't wait for the next installment, can't ya ;) Welcome to my world, people. Where brutal honesty is the flavor of the day. I'll go give myself an attitude adjustment in the form of chocolate cake and promise to be not so dark and deep the next time.
This cutie? He has disappeared.
This smiling, mostly sweet boy? He has been replaced by a hitting, tantrum throwing, kicking, screaming version of himself. Seriously, the devil inside has been awakened. We have not even touched the Keppra yet. It is just being metabolized differently now that the other two (well, actually 4) drugs are gone and the strength is intensified. We have to go slow, since we will not be completely taking him off of this one, just lowering the dose. 
