That thing I never get done? Still not done.
Friday the 7th I got the shock of my life when I discovered I had a voice mail from the school principal at 9pm (she left it at 5). Steve, the eternal optimist said it can't be all that bad. I, the
pessimist realist knew that a message from the school principal from her cell phone on a Friday night saying a "situation that occurred with a staff member" had been dealt with and would never ever occur again was quite certainly a very bad thing.
Thankfully the principal called me back an hour later, even though it was late, to let me know what happened so we didn't worry all weekend. That hour was torture as Ainsley was at home acting completely normal but being non-verbal there was absolutely no way to get any information from her. We realized just how vulnerable she is. What she had to tell us was that the gen-ed teacher reported that she saw Ainsley's school nurse (not our home nurse) strike her twice on the back for knocking over a tin of pencils during reading, much to the dismay of the entire class. She said the nurse would not be allowed to come back (clearly adults cannot strike children at school ever for any reason). This nurse loved Ainsley and had taken her to school since we moved to Redmond in 2011 and we trusted her. We were completely and utterly shocked.
The nurse had appeared sick when she showed up for work that Thursday and Friday although she claimed she was sure it was an allergy attack. I asked her to be careful "just in case", but sure enough Ainsley came down sick a few days later with a runny nose, then a 102 fever. That lead to coughing which turned into tracheitis, causing blood in the secretions she coughed out of her trach for several days. Her eating was affected and I eventually had to tube feed nearly all her feedings because she lost weight despite the fact that we spent a lot of extra time helping her eat. In some ways her being too sick to go to school made us feel better about the fact that we had no nurse to take her to school.
After much consideration over that first weekend we decided to ask the nursing agency to try to find a new home care nurse to cover the other school days (instead of the staffing agency nurse from the school district). The nurse we brought in for Wednesdays and Saturdays a few weeks prior wasn't working out well (she had a bit of an attitude and struggled with some of the duties). We interviewed the new candidate on the 15th but then the agency had some trouble covering her existing cases and things were looking iffy until yesterday when I got the news that she will now be available for the days we need, starting the week after next.
Our home nurse (who works only part time) agreed to help out in the interim. Bless her. Unfortunately with the amount of snot exchanged in our house we all have come down with runny noses at one point or another. Although Ainsley was starting to do better she now seems to have picked up another runny nose (as have I) and is snottier than ever. I'm hoping she'll recoup over the weekend and be able to return Monday.
With Mid-Winter break in the middle there it's been nearly 2 weeks since Ainsley's been to school!
It's not all been nursing drama and snot, we did have a birthday party for Evie and Valentine's Day. Remember I said I was going to cherish the days until she actually turned 13? Well that turned out to be easier said than done. Such is life when you have a special child in your life. "Things" happen. I just keep doing the best I can to enjoy the moments I can. But now I have a teenager to reminder me how fast the days go by.
Click on this link to be directed to Evie's 13th Birthday Album.
We love our birthday parties around here but I want to say that Evie had a great birthday this year even though it was simple. It was really nice, for a change.
As for "that thing" I hope we are all healthy by next week and I will have a chance to get to that thing just in time for a fresh start with a new nurse. We having nothing scheduled for the weekend and are relishing that! I hope you have a great weekend whatever you are up to. Next Tuesday we have a scope, so stay tuned for news about Ainsley's airway and our plans for next steps.