Emma's med switch

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

April 30, 2008

We went to the ER on Tues. morning and she kinda went downhill really quick. By the time we got there they couldn't read her temp on the regular thermometers because it was too low. They used this new one that I've never seen where they rub it on her forehead and roll it down to the bottom of her ear. It showed she was 34 degrees Celcius which is about 93 degrees Fahrenheit. She was freezing cold to the touch. They took us into a room like the first night, but we didn't have to wait long for a team of dr.s to come and take us into the trauma room so they could warm her up. She was sitting on my lap and they kept putting heating packets, warmed blankets and heating lamps on us. They couldn't put an IV in her but they did hook her up to keep an eye on her oxygen and heartrate. They gave her a stress dose of steriods. They took some blood and later the endocrine dr. (hormone dr) came in and said that her sodium dropped even more down to 111. That's when I got scared one, because of the way she said it, two because I've done some reading online and know that seizures could follow. The endocrin dr. verified that it was a threat and they were watching her.

We sat there for what felt like hours, but I have no idea how long it was. They rolled us both up to the PICU and she is still there for the 2nd night tonight. Her temp has gotten normal and her sodium is now up to 134 last time I was there. They gave her the DDAVP this morning and they are going to hold it tonight to see what her body does tonight. One of my big concerns is her foley bag is leaking again and last time she got the UTI was during the time of the leaky foley bag so I really wanted it removed but because she's in ICU and they want a urine count every hour they are being persistant to leaving it in and I do want her levels accurate so we can hurry up and get home. I just don't know which fights to really fight sometimes. I made my concerns WELL known so I hope they know what they are doing. But I told Terry to ask them about using a preventive antibiotic to fight off any bacteria. If they insist to keep it in longer then I think the best route is to remove it and see if they have anyone in the hospital who actually knows how to put a foley bag in correctly. If she gets another UTI I think I'm going to go 'postal' on them. I just feel like I can't protect her very well.

She is looking a lot better but she's still pretty emotional. I have to watch what I say a lot. She also has the IV line in her right foot and the foley bag is taped to her left leg so she's laying like a frog again and her legs cramp up a lot. But she is a little more active and Dr. Sood told us we could take her off the Dilantin (the anti-seizure) med tomorrow. That's great because that med makes her really tired and kind of spacey. We were told that we had to 'wean' her off of it, so Terry is checking on that tonight too. We are thinking that we'll probably be in the hospital till at least Fri. but probably more like Sat. or later in the weekend. I hope we are out before Mon. because that's when Terry goes back to work, lol.
We will do our best to keep everyone updated. I know we'll get this straightened out and they told us that this could be a possibility so although we were hoping not this early, we knew it could happen.

With lots of love,Michelle


More current update:Terry just called and said that they changed their plans and she is going to a regular room and they took the foley bag out. They also gave her a half dose of DDAVP then her normal for at night and they said that her levels are doing well. They also cut down her cortef (which is her steriod) so that's great too! Sounds like things are looking up
Newest current update as of 11:59pm:Terry just called, now they think she might have a UTI. They are doing a needle blood draw and a catheder for a urinary culture. Then he tells me to get some sleep, hmmm. "I'm in the red Jules" and you want me to get some sleep? If it turns out she has one, I'll be needing some bail money if you guys could help me out with that...Jen do you know any good criminal lawyers? hehe - not really. I'm soooo fustrated!!!'">" or > missing in user HTML. Please fix the HTML. -->