I can’t even think of a title for this post cause it’s probably gonna spill out as just random thoughts that are not coherent in any way – but are just little snippets of what is bouncing around in my currently somewhat ADD like brain.
I have to make a list so I remember what I wanted to talk about because I keep getting distracted by shiny objects and people talking at me….
i want to sew something.
drawings of the casket truck incident. or possibly when i tripped onstage at the national spelling bee.
other blog changes.
So – ok – 9 hours later…
I might have enough time to just update on Kaylen!
When we left off last she was still in the hospital, having a really rough time breathing, and we were getting pretty much NOWHERE with the doctor who came on Friday nite. They were letting Kaylen sit at an extremely low oxygen sat number, and our nurse tech and nurse were both getting very agitated at the doctor for us! I asked them to please start a steroid – either in her IV or nebulized – and they said she shouldn’t need steroids this far past surgery, so they would just give her oxygen. I was ok with this, assuming we would cram her full of good stuff Friday nite and bust outta there early Saturday morning. Not so much. Saturday morning the doctor tells me that because kaylen was on oxygen the nite before, they couldn’t discharge her. She had to have 24 hours O2 free before she could go home. Oh i hit the wall right then. It was about the fourth time that i had heard this doctor talking out of both sides of her mouth and STILL not giving me any real answers, so we came up with a “compromise” whereby they would give kaylen a nebulized steroid, and then she would take a nap, and if her sats stayed up during naptime, she could go home. Awesome. Just give me a target to hit, and i’ll hit it. Since they didn’t clearly define what “up” or “nap” meant – I took that to mean that if she laid still in bed for about 30 minutes and didn’t immediately drop to the low 80’s that we were good to go. As soon as she DID start to drop, I woke her up and told the nurse we were ready to go! It was STRONGLY ENCOURAGED that we get an appointment for first thing monday morning with our pediatrician – which is kind of like saying we should get an appointment with the president first thing monday morning – it just ain’t gonna happen.
BUT – in an awesome twist of circumstances that only God could work together – our nurse tech happened to be one of Dr. natalie’s former employees. Who knew us. Who knew that if i was worried, something was wrong. And she went and faxed the office right then and there. And when I called Monday morning, they had an appt at a very easy to attain time. So in we schlepped. Where Dr. Natalie was properly horrified at a.) how crappy kaylen was still breathing, and b.) the very wrong info they were giving us in the hospital regarding what was “normal” or “ok” for kaylen to be feeling after the surgery. She sent us for an immediate chest x-ray, gave kaylen oral steroids right there in the office and called in scripts for more steroids (kaylen + ‘roids = UGGGHHHHHH), more antibiotics, more nebulized meds, and threatened re-hospitalization. She told me the only reason she wasn’t sending us right over to HER hospital was because she knew that if any mom could handle pneumonia of this level at home, it would be me. “Handling it” meaning being utterly exhausted from the every 4 hours med schedule, plus the breakthrough “cough up your spleen” fits, plus the care the other one still needs! But yes – I am glad we could handle it at home, even though i was a little nervous that we would be on the losing side of that battle to stay home.
I am happy to say that I think we are FINALLY making the turn for the better around here. She went back to preschool today, came home and took a 2.5 hour nap, so I thought we’d see how dance would go (she was BEGGING to go!) It was obviously a little much as she is definitely looking like she got hit by a mack truck. But tomorrow we have a pretty light day and she can get some more good rest in. Kendall will hopefully wake up back to her “normal baseline” as she is starting in with some wonkiness that could go either way at this point. but hopefully it’s just one of those off weeks and she settles it all back down soon. Karissa is also having a very off week with some pain, exhaustion, general moodiness and deciding that the main portion of her dietary intake will be those pediasure “sidekick” drinks. Just another regular week around here! Ben’s been in PA all week, but I am assuming that healing in the kitty war wound is continuing along swimmingly.
And now that it has literally taken me ALL DAY to write this drivel, I’ll wrap it up.
And hopefully get to the other shiny objects tomorrow!
thank you SO MUCH to all of you who have made donations to the Hope for Kendall benefit – I just want to give you all such a big hug!!