The plan with the endo has been for over two weeks now was to switch from the injection to the nasal spray. Well, we get to the hospital and first they talk about crushing up a pill, mixing it with a liquid and injecting her. WHAT? Okay, obviously we aren't doing that, so they decide to go with the pill. No idea why.... except maybe for our concern that the FDA listed it as having a shortage. No one at the hospital told us wether there is or isn't. Anyway, they started with a half of pill and are going to work up to see what she needs. OK. They are only going to do labs every 12 hours. WHAT? So her sodium goes into the 150's, they of course want her to drink more. We purposely don't have an IV in her because she has problems with blowing them out and her dosage shouldn't have that factored in, as much like at home as possible....
Well, it was nice and laid back at first which is so not like any of our previous experiences... so we thought, hey this is going great. Well, too laid back isn't good... She is now getting a full pill and her levels are still in the 150's. So I start fighting with the doctors because they want to make her levels good. Instead of looking at her history, looking at what her body is telling us now, they want her to drink 700 ccs of water to get her levels down, as if they are saying that is what we want to make this dose work, not just to keep her safe right now. They were still testing her every 12 hours at this point. I asked them to test more often so we could correct the situation sooner. I stated she needs a higher dosage. Common response, " well, lets get her to drink, drink, drink and we'll go from there" my reply, " Ugh, nooooo, lets get her dosage right so she doesn't have to spend all her time drinking and pee'ing and measuring" It's really not as complicated as they sometimes make it out to be.
Well, since it had been 12 hours since her last test and they are only giving her one pill every 12 hours, her sodium went up to 163, not good, so now they decide to test again in a couple hours and it goes up to 165. So to fix this the answer is to pump her up with iv solution, make her drink the 700 ccs of water and give her an emergency dose of a pill and a half. After fighting with the peds on the floor and then the endo (who I've never met before this hospital visit) about no iv only fluids and the emergency dose, I was accused, w/o officially being accused, that I wasn't looking out for her best interest. I told them both, do a look over on her and see if you think she is medically dehydrated. She looked great, she's playing, talking very clear, has tons of energy, has her thirst but overly. Neither would do it, endo kept saying that we didn't want her in PICU, did we. OH! So it's my choice the nurse took an hour to deliver the first set of meds while Emma was dumping and that they only did labs every 12 hours and that they don't give her a dose that her body requires. I'm only here because I had no better offers! Seriously. I live with her, our family knows her best! When I warn them that she is dumping 9 ounces of urine everytime she goes and that her O's are over 10oz more then her I's, seriously? (O's = outs/urine I's = In's/drinks) Why is that dr.s don't listen to the parents????????
So poor little Emma drank a shitload of fluid after the emergency dose (which, btw, took an hour while she's dumping all the fluid I'm giving her because they ordered at 7pm which is shift change and each nurse thought the other was taking care of it) so all in all she drank 1200ccs in 3 hours. She shouldn't have to do that! Well, I'm sure you can guess what her dose is now, it's the pill and ahalf 2x/day.She's still in the 150's but it's slowly coming down so I'm hopeful that it will level out. Then she won't have to keep drinking so much, not to mention that the endo told us that her thyroid is too low (it's been a yr since it was upped so no surprise there) but that'll make her pee more. Ok, then we really want to make sure her sodium doesn't get too high, right?
Of course my biggest fear is that it goes too low, that's what happened last time on the pill. Everything seemed great, they got the dosage down, we get home, she gets freezing cold, gets lathargic and we're back at the hospital and we thought we were going to lose her. Biggest fear! Not my intention by upping the med, but 1 pill just isn't going to cut it, so if 1 and half is too much then we need to go to the nose.
My biggest problem is that you can add iv fluids to change her numbers, you can make her drink or have her not drink to change her numbers, but that's not going to help us when we get home! Don't they get it?Am I crazy? I sure feel like it sometimes.... OH!!!! And then I get from one of the ped's on the floor that our endo is really good, like Harvard good. Okay, that's great, but she hasn't lived with my kid for the last 6, almost 7, years. But we have and we know how HER body reacts to a lot of stuff, so take what you know from Harvard and what I know about Emma and join up? Why is that so hard for some dr.'s to do?
The endo also had the nerve to come in the next day and say," is this the same kid?" WHAT? She's exactly the same as she was the night before... the endo tried telling me that Emma wouldn't talk to her and that she was so quiet before. WHAT?I've been yelling at her doctors, the nurse, she probably didn't want to say a word, lol! Emma has been so funny and stopping employees in the hall when I step out that I find new people in the room everytime I came back. There were student doctors looking at her crafts, cleaning crew giving her hugs, another student doctor was sharing gum from Emma's stash, nurses in there reading to her! So don't tell me she looks like a different kid, trying to save face that Emma didn't need to drink all those fluids AND have an iv. "Oh, you guys did it" She came in saying. Pfft, Whatever!
Well, I'm praying every hour that this will be Emma's dose and it will work for a long time. We would have so much freedom if she stays on the pill. Pills are just sooo much easier and quicker!
I also talked to a nutrienist and I'm totally energized that we're going to really make living healthier work for us this time. I'm committed (not tonight though, I was too tired, hehe) I warned the kids and now I'll have to get looking for some healthy recipes, if anyone has anything that's kid friendly, I'd love it if you shared!
So, my honey bunny is now in charge and keeping watch. They wanted to check her blood every 12 hours again, but my smart honey said no, every 6 hours. He even asked Emma and she said it would be alright. What a trooper!!! I'm so proud of her. She has taken it all in stride, whether she understands it or not
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