The weather is getting warmer here and all this equipment.... two ventilators, two oxygen concentrators, one humidifer..... is creating some serious heat. The electric bill is going to go right back up to what it was when Mike was here. Small price to pay..... just things to make note of. I should have put the air conditioning on way before I did and Mackenzie paid a price for my mistake.
She was having trouble breathing and broke out in a clammy sweat and wheezing and a lot more effort to breathe. I gave her 2 breathing treatments and it wasn't making enough of a difference. I put a fan on her and called the pulmonologist on call and was advised to go to the ED. It was the very last thing I wanted for her, but she is so new to all of this that I took the advise. It meant having to call my brother to come stay with Taylor with no notice.
Kenzie was given 6 consecutive breathing treatments but with a different kind of medicine. Still bronchial dialators but Albuterol and Atrovent. It isn't advised to do that at the house due to cardiac risks. Kenzie responded beautifully but they still wanted to admit her. She was admitted under pulmonary service but in critical care.
Once again, ED was great, but as soon as we got up to the floor.... everything that I tried to prevent as common problems just couldn't be prevented without me guarding her for every second. Once again I am repeating myself..... don't drown her, don't pull her over by just her arm, don't give all of that all at once.....
Even the things that I was able to get written in as physician's orders were being ignored. I knew that they wouldn't get her brand of formula up to the floor until the morning so I asked the doctor to write for just Pediasure because I knew they always had that in stock on the floor. Once we were up on the floor I told them she needed to get her feeds started because she had been without fluids of any kind for over 4 hours. That's 400 ml.... you can't make that up in a day without giving her too much unless it's IV. They tried saying that she has two orders in there and they don't have it on the floor. I had to turn on the bitch mode and insist that they go get the Pediasure and start her feeds.... now. That didn't go over well, of course, but given the last admit when I was nice and apologetic for days thinking that that's what Mike would want me to do and seeing how horrible it all turned out... I went back to being Ann not the new and improved Ann, the Ann that gets shit done.
If you read a previous post I think I wrote that her sodium chloride (for hyponatremia) (not enough salt) needed to be diluted down in her feed bag because giving her the full 30ml all at once in her j-tube made her gag and wretch something horrible. Knowing this, I had the doctor write an order to add it to the food bag. I was relieved to have that issue resolved until I woke up at 8:15 having fallen asleep sitting up at 6am to see the nurse starting to give it to her... in her j-tube.... right after giving her over 30ml total volume of other meds that she couldn't remember what they were. One of them was her Methadone. She is still being slowly weaned from that narcotic. This nurse MIXED her Methadone in with all her other medication in one syringe!! No on in their right mind would mix a narcotic like that. I raised my voice telling her what bad nursing judgement that was and why. She didn't care. She didn't care one bit. She even argued with me about giving the sodium chloride into her j-tube.... "Mom, we give it this way all the time".... GRRRRRR
I slept for maybe 2 hours, was awake for maybe 30 minutes and caught 4 mistakes!
These aren't issues that are specific to Mackenzie, these are general protocols that this nurse and many others choose to ignore, because they can. Because these kids are already in critical care and if something were to go wrong...... well..... sometimes these things just happen.
Luckily, the pulmonary team was the same one to discharge Mackenzie just a couple weeks earlier.They all agreed that Mackenzie was well enough to go home. We went home with refills on medication (it's challenging to get that done without being "seen"), a protocol on what I can do for her if she has another asthma attack, and a repeat xray to see how much her lungs have already improved.
I have been working so hard at keeping her healthy and home. Taylor too. Taylor was still on antibiotic during all of this and needing more attention. I'm beginning to wonder if this "more attention" is just going to be our new normal. I wonder if I can keep doing all these hours myself? Right before Kenzie got sick, I had fired one nurse and another quit unexpectedly. I am doing their shifts along with the required "Mom" hours (8 hours a day gratis due to the State needing me to take responsibility for my own child even though she isn't a minor anymore). I requested that the nursing hours be granted for 20 hours a day since that is what we used to have for Taylor until they changed waivers and reduced it with no appeal since it was a new waiver. They approved 18 hours a day, which is only 2 more. And I need to hire another nurse. That is going to be so difficult. I'd rather just provide the care myself right now. I think it's the only way that I can keep them out of the hospital is being more direct care.
But I'm tired. I get dizzy easy. My legs buckle underneath me at weird times. Anytime I sit down, I fall asleep. The stress of all of this is getting to me and I haven't figured out a way to make it better yet. I'm working on it.
Along with all this stress, I'm also feeling a lot of guilt. I feel guilt because I know that if Mike were still alive that there is no way I could do all of this by myself. When he was alive, I literally begged anyone... family, friends, his trust.... anyone for help and received nothing. Mike would have felt more guilt than I do now if he were alive and knew that he was the reason I couldn't be with my kids in the hospital. Kenzie would have likely died without me there. I miss him horribly, especially with all this going on.... and yet, I am relieved that he isn't here for me to have to care for. .... talk about feeling like shit.
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