Ugh!! It just had to be when hubby is out of town! I went to get Nutty Buddy to bed and went to check on the Peanut. OMG!! I could hear her struggling to breath!! I checked her and her pulse ox was 18!!! Yes, full freak out mode! I ran into the other room to hook her BiPap machine back up to oxygen. I also tried to wake her up, with Nutty Buddy's help, and she wouldn't respond. She was just drenched in sweat too. After what seemed like several minutes, but I'm sure it wasn't, she started to come out of it a little bit, and with about 5 liters of oxygen, she finally piqued up!
I called hubby and Grandpa right away. Hubby said to get her to the ER right away, and then Grandpa met us up there. This was around 10:15 p.m. It took us about 1/2 hour to get into a room even, which is more unusual. But we did, and luckily we had Dr. F. and Dr. H., both ER docs who have seen her before. It makes it a lot easier to not have to explain her long, complicate history to people all through the night.
By midnight, Grandpa took the boy home to bed. While he normally loves to stay up late, midnight was really pushing it, even for him! And since it appears that for once, we wouldn't be addmitted, I sent them back home. They gave her a nebulizer treatment, then a chest x-ray, just to rule anything out. But even Dr. F. said how odd it all was since she had no illness symptoms at all! She hasn't had a cough, cold, sneezing, nothing!
She finally fell asleep, while I sat around until 4 a.m. They had to wait for the chest films to come back, and the radiologist checked them. They said there might be some residual pneumonia in her lungs still, and it can stay there for a long time after, but it didn't appear that it was anything new at all. They gave her a course of antibiotics, starting in the ER, to help kick anything out. It's only a 5 day course, so not bad at all. The longest part was waiting for the medication there! Her poor nurse, Matt, felt so bad! He had gone on break and had another nurse covering, so when he saw us still there when he came back, he was shocked! He checked with the pharmacy, and apparently, they mixed up her meds, but left them sitting on the counter instead of sending them over! He even had to call a second time! Argh! But no biggie!
She was fine all day, and is hooked up to her pulse ox again all night. She did have a de-sat episode about 45 minutes after I put her to bed, but I went up and adjusted her, moved her pillow out so her airway could open more, and she's been fine. It's just so damn exhausting!!!! I only got about 3 1/2 hours of sleep last night, or very early this morning. And of course, kids aren't that forgiving when a schedule is all screwed up!
Hopefully this was some odd episode and she's all fine!!!
Friday, July 24, 2009
Tuesday, July 21, 2009
Online calorie/activity counting again
I'm going back to keeping track of all of the stuff Peanut eats and does everyday! I had to go back to find a good one, mine appears to be gone, but I'm going with CalorieKing.com - although I had to age her 1 year. It only takes the info if you say the person is age 7 or older. At least it's only 1 year difference. So now I can get a better handle on things. Plus I like the amount of restaurant foods that are on it!
We saw the second opinion endocrinologist today
So today was our appointment with Dr. L., another endocrinologist. I felt a lot better coming out of his office then I ever did with Dr. G. We spent 3 hours there, they made copies of the reports that I had, read things over, talked about things, checked her out, and gave us a ton of follow-up things.
First and foremost is the watching what she eats and getting her more exercise. That's the no-brainer in my opinion. But I always want her to hear it again and again, especially from the doctors. The dr. gave her a new bucket of sidewalk chalk too, telling her he wants her to play hopscotch. And to follow-up on all of this, he wants us to see a nutritionist again, have them do a calorie count and go over portion control/sizes again.
Then he wants us to get her a bone age x-ray done. I guess they can see your growth by x-raying the hand/wrist area. Since they measured her weight and height today, they commented that she appeared to have a short stature. She measured low for height now. That was something that nobody else really said before. She was always near the lower end, but as I pointed out to Dr. L., she doesn't come from tall stock!
Finally, he wants a ton of lab work done. He said they're all tests that previous doctors never did or that they're out of date already. Plus, he would really want them to send the lab work to a lab in California that specializes in pediatric testing, then the results would give him a lot more answers. The tests they want us to do include: Karyotype (chromosomes), a.m. Cortisol, ACTH, fasting lipid panel, chem-21, CBC, leptin, Free T4, Total T3, TSH, IGF-1, IGA, IGF BP3, anti-transglutaminose, hydroxy vitamin D, CRP (creatine protein). Now, most of these things don't mean anything to me. Soo... tomorrow morning I need to talk to Ms. S., who handles all her referrals. I don't know how this all works, getting referrals for this work, when it's from a doctor that's not at her normal medical site. That whole HMO thing.
Anyway, she did really well, it was such a huge help that my parents came with. Then grandma could stay in the lobby with Nutty Buddy. He wouldn't have sat in that small room for the 2+ hours we were in there. As I said too, I felt a lot better coming out of there. Granted, it may still come down to her eating and that's it, but I just felt a little bit less "the bad person" when I left. I felt that Dr. L. spent way more time with Peanut than Dr. G. ever has. Oh, and his P.A., Dr. O. was really nice. We spent most of our time with her anyway, she was great, so thorough!
I'll update some more when we get a plan of action for all the testing to be done. And I'll just keep hoping that they find something!
First and foremost is the watching what she eats and getting her more exercise. That's the no-brainer in my opinion. But I always want her to hear it again and again, especially from the doctors. The dr. gave her a new bucket of sidewalk chalk too, telling her he wants her to play hopscotch. And to follow-up on all of this, he wants us to see a nutritionist again, have them do a calorie count and go over portion control/sizes again.
Then he wants us to get her a bone age x-ray done. I guess they can see your growth by x-raying the hand/wrist area. Since they measured her weight and height today, they commented that she appeared to have a short stature. She measured low for height now. That was something that nobody else really said before. She was always near the lower end, but as I pointed out to Dr. L., she doesn't come from tall stock!
Finally, he wants a ton of lab work done. He said they're all tests that previous doctors never did or that they're out of date already. Plus, he would really want them to send the lab work to a lab in California that specializes in pediatric testing, then the results would give him a lot more answers. The tests they want us to do include: Karyotype (chromosomes), a.m. Cortisol, ACTH, fasting lipid panel, chem-21, CBC, leptin, Free T4, Total T3, TSH, IGF-1, IGA, IGF BP3, anti-transglutaminose, hydroxy vitamin D, CRP (creatine protein). Now, most of these things don't mean anything to me. Soo... tomorrow morning I need to talk to Ms. S., who handles all her referrals. I don't know how this all works, getting referrals for this work, when it's from a doctor that's not at her normal medical site. That whole HMO thing.
Anyway, she did really well, it was such a huge help that my parents came with. Then grandma could stay in the lobby with Nutty Buddy. He wouldn't have sat in that small room for the 2+ hours we were in there. As I said too, I felt a lot better coming out of there. Granted, it may still come down to her eating and that's it, but I just felt a little bit less "the bad person" when I left. I felt that Dr. L. spent way more time with Peanut than Dr. G. ever has. Oh, and his P.A., Dr. O. was really nice. We spent most of our time with her anyway, she was great, so thorough!
I'll update some more when we get a plan of action for all the testing to be done. And I'll just keep hoping that they find something!
Saturday, July 11, 2009
Now, for something totally different...
I've said before, photography is a little hobby of mine. I'm trying to learn, get better, and maybe
one day, make some sort of money on it. But for now, it's just a fun thing. I've been taking a lot of pictures lately, with the 4th of July and all that going on. So I thought I would share a few of them...
These are images that are a few of my favorites from the past few months. I'm going to add some of my all time favorites later.
This is just a collage of a a bunch of my favorite flower pictures:
One of my more recent favorites, from the Chicago Botanical Garden
Buckingham Fountain
Lisle's Eyes to the Skies
one day, make some sort of money on it. But for now, it's just a fun thing. I've been taking a lot of pictures lately, with the 4th of July and all that going on. So I thought I would share a few of them...
These are images that are a few of my favorites from the past few months. I'm going to add some of my all time favorites later.
This is just a collage of a a bunch of my favorite flower pictures:
One of my more recent favorites, from the Chicago Botanical Garden
Buckingham Fountain
Lisle's Eyes to the Skies
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