But it could happen tomorrow.
Ethan has been back on full feeds since Friday.
His heart rate is back up to high 50's low 60's.
He is tired of hanging out at the CMH, but off oxygen he was only at 87-88, so that has been the only thing keeping him there. They want him to be without oxygen while sleeping and keep his sats above 90. Not sure how soon that's gonna happen. Since we've done the oxygen at home thing before, I'm ready to pack his skinny butt up and head home with some O's rather than wait for him to come down with something else!
They think his seasonal allergies and asthma are what set all of this off, and warned us they expect this to be a bad, bad, very bad spring allergy season! Woo-hoo! Back on an asthma action plan we go. I am going to ask about increasing his Robinul though. Pulmonology was trying to wean him off it, but with the increased secretions, I think he needs it full strength again. The Robinul is used off label to help control secretions-Ethan's drooling-and it really helps.
Whenever he has a little virus or allergy flare up, his skin gets crazy. His eczema acts up and the skin around his GJ gets red and angry. So wound care came by and hooked us up with some fabulous products! Mepilex and Stomahesive powder and Cavilon No-Sting barrier cream. Oh, and a Flexi-trak device to hold his tubing in place and keep it from moving around his stoma and irritating it. We haven't been in the hospital for so long we didn't know about all these new fancy tools and gadgets! Time to make more room in the bald kid's supply cabinet!
I expressed my concern about his heart rate, so Dr Kaine came by Friday afternoon. I was crashed out from working the night before, and the one time my husband didn't wake me up was this time! Dr Kaine is not concerned about the bald kids heart rate, but still hasn't decided whether we are keeping him on the Digoxin or not. What I did not get a chance to ask, and my husband didn't think to, was when do we need to be concerned? They have moved his follow up Cardiology appt from 6 months to 3 months, so if nothing else, I will ask then!
These last two weeks everyone in our house has had a run of illness. It started with me week before last-sinus infection, upper respiratory infection, the start of a little pneumonia. Then Brian two days later, then the bald kid, and finally Hailey and Parker missed school Thursday and Friday. So, as I am taking one kid to the hospital, nursing two other kids, a husband and my own illness, I also worked full time-nights no less-minus the 3 hours late I went in the night E was admitted since my husband was at home sick and I needed to get him settled in the big house before going in to work. But we managed, as we always do. And our older kids stepped up, took care of themselves, and their responsibilities.
Hailey missed VB practice Thursday evening because of this illness that spread through all five of us in our house in 7 days. We kept her home in the thought we did not want to expose her whole team to the illness. She had a tournament on Saturday and we felt missing one practice to rest and get better for her tournament was the best thing to do.
Well, apparently her coach thought she was either playing hooky or that she should have come anyway based on the shitty text she sent her, not sending her a pre-tourney text about arrival time and jersey color, and the way she treated her at the tournament itself. I don't post about certain incidents because I don't know who all reads this, and I don't want to call anyone out or hurt anyone's feelings. This time, I'm done being nice while someone treats my kids poorly. Gloves are off. And whatever I say on here, my husband I will be sharing with her coach, in person. This is not an email or text convo. So you might be asking why I'm posting? Because with all the focus on the way some coaches treat kids badly, I want people to know it can happen in any sport, at any age and we as parents can't keep allowing it. Hailey has missed 3 practices of club ball all season-two for illness-this being one, and one for a visitation. Less than all her teammates. And she's never missed a tournament-never a minute. She made the commitment and she takes it seriously. Hailey went to her tourney by herself Saturday morning because Brian was at the hospital with E and I worked until 0530 and went home to sleep. Yep, she set her alarm, got up, got there at the time she had to text and ask her coach what time to be there, all by herself. Her coach was 10 minutes late.
They had to ref the first game, which Hailey always willingly helps. She line judged. Between games she and another girl agreed to switch, so she went to the bathroom because her nose was running and she needed to pee. Upon arriving back to the bench, her coach attacked her and accused her of shirking her responsibilities. I'm more than a little disappointed the girl whom she had switched line judging with didn't speak up during this. Of course Hailey didn't drop the dime on her, because she's not like that. But wow-awesome team mate! The coach accused her of not having her head in it-in what exactly? Their game hadn't even started. So Hailey, who would never back talk an adult, except her dad or I, apologized and told her that her allergies were bothering her and her brother was in the hospital. At this point her coach told her maybe then she didn't even need to be there. And not because she was worried about her state of mind. Well, for a 16 year old to get herself to her tournament without parents, and while her brother is in the hospital, and with a coach who couldn't be bothered to send her the tourney info, I'd say that says something about that kid's character. So I will be damned if that coach gets to make her feel bad about it. How about you address the tardiness of girls to tournaments, the attitude and arguing with refs which resulted in one girl getting a yellow card from HOA or the general lackadaisical, 'don't want to be there' attitude others have had. So much for believing this coach who told us from day one she doesn't put up with drama. We've got enough real life drama, don't need it from a coach with her own. And I really wonder if she would have treated Hailey that way had one of us been there.
We hate missing any of the kids events, but sometimes that's life. They know it and understand it. It's not fair and neither is life. And if Hailey was shirking her responsibilities, I expect it to be addressed, but those of you who know our girl-know that's probably not likely! And I expect it to be done respectfully, at least that's what we expect from our kids, so it's not too much to ask for it in return.
Sorry for the rant, but I am trying to keep it all together after the shitty month I've had, and this incident just about pushed me over the edge. Me, the one who never lets shit get to her, cried the whole way home from the hospital. I'm done letting people attack my kids. I let it slide in the name of a friendship of my husbands many years ago-and I never should have. I should have gone right across the street and punched her in her big nose and fake mole. Sorry-story for another time.
But between my work comp knee injury-which BTW is better and even if it wasn't I wouldn't act any different because work comp is a joke. I just ended up burning my own time-like I had any to spare! Then me getting sick and using more time I don't have, my blow dryer catching fire (trivial, I know, but I loved my blow dryer and now that I have hair to use it on....) our TV going out, Ethan getting admitted, Brian getting sick, Hailey and Parker getting sick, the little dog having diarrhea all over the house, the big dogs jumping on the table and eating all of the leftover birthday cake-yep chocolate-and some old lady backing into my husband's car while he was getting food on his way to the hospital, is it any wonder my blood pressure is high???
So beware.
I may be a little quick to overreact right now.
So think before you piss me off.
Because I will punch you in the face.
And enjoy it.
Ps-a little packing tape can fix anything. Even when your diffuser won't fit on your daughter's blow dryer.
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