A sweet new year!?

Brenden has now been home about a month. He’s been doing really great, having gained almost 4lbs and his head circumference has grown about 4cm! This is all great news! He is active, happy and smiley! He does as many age appropriate things as his body will allow (putting toys in his mouth, smiling, examining his hands, enjoying looking into mirrors, waving his hand and moving his arms/kicking legs to music, etc). He adores his big sister (who adores him right back). He gets so happy when he spends time with his family, just hanging out in the living room. He has some awesome nurses that go above and beyond…and he likes to flirt with them (smiling and winking)!

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He’s really happy and doing really well. Now, that’s definitely the most important thing. That being said, please allow me to rant a little bit about everything else. Lol

This week on “Brenden’s world of nurses”: A nurse unplugged Brenden’s machines to charge her phone and laptop. Then, she complained that the 3 chairs I offered weren’t “cutting it” and left him with spit up all over his neck in the morning. Another nurse had Brenden disconnected from his ventilator for 351 seconds (vent has a log) and instead of investigating, simply silenced the alarms over and over again while he desat until Mike came running in when he heard it 5 minutes later. Then, Brenden’s trach cuff was inflated to various levels by various nurses for no good reason (despite me saying NUMEROUS times to leave 1cc ONLY) causing the trach to become defective (cuff no longer inflating) and stoma to bleed…and then nurses opening trach ties for unknown reasons (when I’ve asked them to now leave trach care to me) leading to his trach falling out spontaneously because his DALE trach ties (that Velcro like glue) somehow spontaneously opened, requiring the grabbing of a new trach to shove in to his throat without lubrication. I was at work when I got a lengthy text from Mike, but all I saw was “trach fell out” and then I’m screaming in my classroom…running home and yelling at the agency…calming myself down so I could be a detective at home…and now having to explain to each nurse over and over again what went wrong. Oh and I went to change the tubing on his circuit and found mysterious parts changed/added to the tubing that we did not own…meaning a nurse added adapters to his tubing without our permission (which turned out OK but could have gone the other way).

The night after Brenden’s trach fell out, his feeding pump was beeping and Juliana started to cry. She said she was scared that Brenden was hurting and “will he be ok, Mommy?”. She loves him so much and “Mommy, we are both your babies, right?” She’s TWO AND A HALF YEARS OLD. She’s being exposed to so much that she is maturing so much before my eyes.

We had 2 nights and 1 day this weekend without nursing coverage. This doesn’t count the numerous calls we made all week yelling at Cornell’s billing department, Medicaid, Ei (who keeps changing our meeting dates), and the enteral feeding company (that NEVER sent us certain supplies we need yet). In addition, our case worker at insurance finally called back Friday…she did not return my calls for 3 weeks – and only realized because I sent out a literal search party for her and filed a complaint. She tells me the insurance is considering cutting back our nursing hours because apparently we haven’t been utilizing 24 hours!!! It looks like I’m DECLINING nursing coverage…instead of the truth that we just haven’t been getting nursing coverage!!! I clarified that though. I even went as far to explain that we’d like to hire another agency to fill in the gaps, because we can’t live like this. She said she’d call back Monday at noon, but has since gone MIA again.

This is all on top of the fact that I went back to work last week & someone I know there had a heart attack. Yes, a literal heart attack. She has always been very supportive of my family so I’ve been worried about her. She’s stable but the news really upset me…and I keep praying for her full recovery and asking her how I can be there for her.

In any case, everything is fighting fighting fighting. We got a certified letter from the manager of our building complaining that shoes are left outside our apartment door (really, they can take the shoes and…youknowwhat themselves), even though the Board president gave us the OK to leave a small shoe rack outside our door for the nurses.  Before this, our respiratory therapist from our DME quit by running vents over with her truck, so we haven’t had vent check ups that we have been owed, since they seem to be having trouble replacing her appointments. Then the enteral feeding company, Coram, can not get it together to send us what he needs to be fed (if it wasn’t for donations from strangers on Facebook, he would have starved). Then, Blythedale gave me a letter for CONED to inform them that we have a vent dependent child…and I got back a torn up letter (in plastic from the post office, apologizing for ruining it) stating that they need a new letter because the address of Blythedale was not on it.  Also, if you’re on my Facebook, you know how I had to take on the DOT & had to fight until I heard from the Deputy Director.

I can’t imagine that everyone has the energy to do this shit (Lord knows I dont!). I don’t even feel like it’s advocating. It’s like, explaining to people why they aren’t doing their jobs right over and over. I’m on such a high sense of panic/alert constantly. Mike & I keep joking that this should definitely make this into a reality tv show. We might have mental breakdowns, but think of the ratings we’d get! 😂 Plus, then he could go back to work!

Please pray that Rosh Hashanah brings us all a better year…a sweet, less stressful year…because I’m mentally exhausted beyond exhaustion. Can ONE thing be simple? What kills me is that this shit seems common in the special needs community and all of us who didn’t live it before HAVE NO CLUE how difficult every system is! How can we make this better? Not just for us, but everyone in similar situations?