I don't know where to start. So many things are stressing me out lately. Maybe if I list them out, it will help me organize my thoughts and worries.
1. Harlie's IEP (individual education plan) changes (which we are currently working on).
2. Harlie's medical issues at school.
3. Cooper's preschool issues.
4. Nursing schedules.
5. Jaw surgery for Harlie - working on second opinions.
There's more, but those are the biggest right now.
I'll start with Item #2. Harlie's medical issues at school.
Did I tell you that we found a new nurse? I can't remember. Anyway, Terri's been with us for 2 weeks now (which I think is 6 days of working so far). So, yesterday (Thursday) I told Terri to take Harlie's cap to school and put it on her for an hour at a time to see how she does.
A cap is a piece of plastic that goes over the trach, and completely stops any air from being able to go in or out, forcing her to breathe through her mouth and nose. We put it on her Wednesday after school and she did great! It is much harder to inhale for her than to exhale, so that's the real test. Anyway, so following my instructions, she waited till Harlie got settled in, and went to put it on her. Harlie's interpreter saw what she was doing, and told Terri she could not put it on her because she needed to have her PMV (or speaking valve) on to talk. Terri, being new and not wanting to rock the boat, didn't want to argue with her, so she put the cap away, and put her PMV back on Harlie.
To give you a little education - the trach is located below your vocal cords. Your vocal cords work by air passing through, causing a vibration. Air passes through them when you breathe. But, since the trach is below the vocal cords, air doesn't get a chance to travel through them. So, no sound can be made.
The PMV is a one-way valve that allows air IN through the trach but not OUT. That forces the air to exit via the mouth and nose, which means air now can travel through the vocal cords, thus sound can be made. Which is also why the PMV is called a speaking valve. It is called a PMV (Passy Muir Valve) for the people who invented it.
Now, put a cap on the trach and ALL the air travels through the mouth and nose (just like a normal person), which means air travels through the vocal cords, and sound can be made.
So, as you can now see, the interpreter telling Harlie's nurse to not put the cap on was completely WRONG. She can speak with either on. But there are more important issues here...
1. There is not another person in that entire school that knows what Harlie needs medically. And I realize that there is no way that her interpreter should know all that stuff. Which means she has NO business telling Harlie's nurse anything when it comes to her medical care. Period.
2. Several staff members have already questioned her nurses on several different things. And I don't mean, "Oh, so why do you have to do that?" I mean, "What are you doing and do you have to do it now?" I can't tell you how bad it could be if Harlie's nurses had to consider the staff member's reactions every time she had to do something with Harlie. That is a very dangerous road to go down - it's something simple today, something life threatening later. And I just cannot allow it. We (her nurses and I) are very respectful when we have to enter the classroom. But that respect needs to go both ways. And let me just tell you - none of us want to be there. I wish we weren't needed.
3. If her nurses don't feel comfortable there - they will quit. And I will be pissed. We need our nurses. And I know they get paid squat. I want them to like this job. I want them to be happy. And if they feel like every time they have to do something with Harlie that they are making someone mad or uncomfortable, they won't want to do it at all. Not a good situation at all.
So, I sent an e-mail about this last night. And for some reason it didn't go through. So, I had to send it again this afternoon. Hopefully we can reach an agreement that we all just need to get along and work together as a team. After all, we all want the same thing - for Harlie to be able to learn and be safe at the same time.
On the same medical issues subject.... I received a call today from a nurse with the school system. She is a registered nurse (RN) and wanted me to know that they wanted Harlie's teacher to know how to suction Harlie, should there ever be an emergency and Harlie's nurse was unable for whatever reason (she was in the bathroom, which is down the hall, for example). BUT, she said that since her teacher is not an RN she was not allowed to suction past the opening of the trach. Which basically means she's not allowed to suction at all. So, the whole training thing is pointless.
Suctioning means you're using a catheter and inserting it in the trach tube (cannula) to suction out mucus from the cannula which is about 6mm long. So, if Harlie has a mucus plug (a sticky ball of mucus that gets stuck in the cannula) and Harlie is unable to cough it up to the opening of the trach, she is not allowed to insert the catheter deep enough to suck up the mucus plug. So, should Harlie not be able to breathe because of this plug, she won't be able to do anything to help her.
And this, my friends, is County policy.
So, I told this nurse that this policy is the same as telling a mother that if their child chokes on a hot dog at lunch, they will only be able to do the Heimlich Maneuver halfway. What about CPR? Only halfway, too?
What the hell kind of policy is that?!?!?
So, she says, "well in a real emergency, we would do whatever we had to do." Really? I told her I was hardly comforted by that, since the policy covers their ass from having to do anything. Well, okay, I didn't say "ass." But, I told her I was not comfortable with that policy. It makes NO sense!!! Who in the hell wrote that? Certainly not a physician or anyone who has ever worked with trachs before.
It's actually quite scary. But, clearly, not a concern for 99.9% of the moms of kids who go to school. Just me and a few others scattered about the entire county. Oh brother.
While I realize (and pray) that the scenario of Harlie's nurse being unable to suction, and Harlie being unable to breathe is slim to none, the fact that that policy exists is extremely bothersome to me. Clearly, I have to make some phone calls. Great. Add that to my list.
Which reminds me, Cooper and I were coming home from preschool the other day when he says, "Mommy, I want chicken nuggets and french fries." And I say, "But we don't have chicken nuggets and french fries." And he said, "Whaaaat?! Oh, great."
So, last night I was supposed to go down to the Expo, pick up my race packet and then head over to a friend's house with my running group and have dinner to carb load and have fun. But, I was so upset over what happened yesterday, and I knew I had to send out that e-mail stat, that I just couldn't change gears, and go out and have fun like I was totally fine. Because I wasn't. Too many issues to worry with that I just WISH I DIDN'T HAVE TO WORRY ABOUT!!!
And I can feel how tense I am. And it feels awful. Luckily, I got a massage gift certificate for my birthday. OH! I haven't been able to tell you about that yet! If you know that my birthday is in December, you might be confused. I'll clear that up soon. I hope.
So, the Half Marathon is tomorrow. And I just haven't had the energy or the time to be able to get excited. Which stinks. I hate to be a complainer - but the past 9 weeks have been really difficult and straining. I always feel like I'm on the verge of tears. And I really am pleased with how well Harlie's doing. But I get constant reminders of all she and we have lost and how difficult things are going to be for many more years. And I just wish I could be a regular mom sometimes. One who doesn't have to worry about suctioning or stupid policies that would endanger my daughter's life.
I was feeling particularly down this afternoon as I was racing to the Expo to get my packet. I was late (as usual, despite all my efforts) and my friend Heather called and said she already picked up my packet - and switched my bib from the full marathon to the half for me. Awesome.
I don't know what I'd do without my friends. Especially Heather. When I feel like crap, she makes me laugh. And then I feel like myself again. If only for a brief moment.
So, from this point forward, I am going to relax, and think about running with my friends - Heather, Niki and Natalie - and having fun. I will run in this beautiful fall weather and I will soak in the cheering of the crowd. And I will have fun. And I will not worry about my time, because we'll probably gab the whole race.
And then later on that night we'll go to dinner with my running group. I hope. Because I just got a call from my nurse and she cancelled on me. So, now I hope I can talk one of my other nurses into coming. UGH!!!!!
Seriously, I'm going to have a GREAT time tomorrow. I'll tell you all about it later.
Thanks for reading. And thanks for always being here for me when I need to talk.
Monument Avenue 10K!
2 weeks ago