11/28: Back home now

Anya and I are home now.  They monitored her oxygen saturation levels at Children's and they remained in the 90's w/o supplemental oxygen.  When we first got there, her levels match what we were finding yesterday and this morning at the pediatricians (mid to low 80's) but once we got settled in to the ER they improved right away.  We'll go back in again tomorrow and check it again...  Overall she looks good and seems to have regained her energy. She hasn't vomited since around 9:30am and is now taking in food and acting more hungry.    I think she'll be fine but I also think we got extreamly lucky to just happen to catch it early. Pneumonia is probably my biggest fear with her as it can get out of control quickly. I said it before and will say it again, She's a fighter...  Thanks all, we appreciate your support, thoughts and prayers.   Time to see if that little bugger is going to sleep now.

Off to Children's

Pete took Anya down to Children's Hospital this afternoon. We went in for a doc. appointment this morning and found her oxygen saturation to not be very high. We need to do what's best for Anya as much as I hate to see her go to the hospital. They will probably be home tomorrow if all goes well. Please keep little Anya in your prayers!

11/27- Pneumonia :(

Anya continued to vomit through this morning so we decided to take her in for IV fluids. Fortunately so..  Routine vitals while being brought in to the ER found that her oxygen levels were fairly low (pulse-ox read 85 where she is typically 98%).  They ordered chest x-rays and found trace evidence of pneumonia developing.  She's now on antibiotics and we'll just watch her closely for fever or rapid breathing and take her back in tomorrow and for the next few days to re-check her pulse-ox.  

 

We also hate to report she now weighs only 15lbs.  We've started to reintroduce foods this evening but her digestion rate appears very slow. 

 

Well, if nothing else, she's by far the prettiest sick little girl we ever seen (I may be bias).

11/26 Anya's puking again

Anya woke up puking this morning. I will update when she is feeling better.

11/26 Sick again...

Greetings all.  I'm not sure if we just got lucky for that 38-day stretch she had but she has been vomiting again (once Satuday night, a few times last night, good through the night but then started again this morning).  Who knows... 

11/20 Doing well

Sorry I didn't get a chance to update sooner but Anya has been feeling much better. She stopped vomiting Sat. evening and has been doing well since. This last episode lasted a long time, 3 full days, but we were able to get some fluids in her each day. The really big problem is that she is losing so much weight which she can't afford to do. So we need to think of something soon to get some weight on her. We are trying to get into a clinic in Houston that specializes in ped. GI. Hopefully we can get her in to see that doc. sometime in the next couple weeks. He could hopefully give us insight as to why the malabsorption problem is happening.

 

Happy Thanksgiving!!

 

 

Nov.17 Still sick

Just a quick update, Anya is still sick. She's been vomiting since Thursday. If she doesn't start holding down pedialite today she is going in for an IV for some hydration. Ugh, what a bummer. Just when we thought we were done with this. We still are very concerned that she hasn't gained any weight on the avocado diet. There are def. malabsorption problems going on just not sure what to do about it.

We'll update later.

11/15

Well it happened, Anya started vomiting late last night. What a bummer. We could tell she wasn't doing well, her mucus started increasing and I knew it was just time before she got sick. We are so happy with the duration between episodes but not sure what triggered it. We will keep up with the avocado and see if it helps. Today she will just get some pedialyte and hopefully be able to hold it down.

11/03 Weight Gain!!!

Yahoo!!  Anya finally broke the 17lb mark.  As I think we mentioned in an earlier posting, out of frustration we changed her food base recently to our own concoction of avocados, brown rice syrup and a bunch of different oils.  Well we finally ramped up her volume of feeds to our goal of  900-1200 calories/day.  She's gotten the full feeds the past two days and is actually acting more hungry. Tomorrow will be 1 full month without vomiting.  The last time was on Katie's birthday, Oct 4th.  We started her new diet on Oct 5th but I'm sure her not vomiting is just a coincedence if you ask any of her old doc... (sorry, still bitter).  Last week Anya was still at her seemingly locked weight of 16.5lbs.  Today she was at 17.15.  This is her first gain since February.

 

We also had an interesting phone consult tonight with a Dr. we've connected with through Wisconsin Hyperbarics.  He explained some of her recent labs with great detail, finally providing a bit of clearity.  I don't want to get into to much of the details but it looks like we need to do a lot of celation (removing toxic metals) for quit some time (6-12+ months, who knows..).  We plan start celation once we have a good regemin in place and after she gains a bit more weight.  The process unfortunately also draws good minerals from her body as well so we need to be carefull.  We are hoping to start at 18months (Nov 22nd).

 

Thats all.  Good night.