Cody (3) and Brynn were playing so nicely the other day. They then came out of the bedroom and asked for a lunch-box. I figured they'd just be shoving as many things as possible inside, likey they do with any other bag/box. So I gave them each their own lunch-box and they went back to their bedroom. I quietly peeked in on them and observed them playing "lunchtime". =) They made a table and chairs with blankets and pillows, and were beginning to pack their lunch-boxes. Brynn started just grabbing any toy food she could find and Cody stopped her, saying, " BRYNNIE!!! You HAVE to be careful. You can only pack safe food for the baby (a doll) so she doesn't get an owie tummy and have to go to the hospital!!!" Brynn said "K" and took the food out and waited for Cody to tell her what was safe for the baby. They enjoyed their lunch, then began to clean up. Cody said, "QUICK! Brynnie! Vacuum up the crumbs!!"
After watching this, I wasn't quite sure what to feel. Upset that they think food can be a dangerous thing? How can something that is supposed to nourish you, be such a terrible, dangerous thing? Or should I be happy? Happy that he is there to protect his baby sister?
I decided to be happy. They need to have this knowledge. This is a new lifestyle for us. This IS our normal, and it's ok. We WILL be ok. =)
Tuesday, January 17, 2012
Thursday, January 5, 2012
ER and hospital stay =(
I will try not to get into TOO many details, because that could make this REALLY long. =/ Brynn's doctor wanted us to stop giving her Quaker Oats because there was a chance they were contaminated with gluten, and her scope showed signs of Celiac disease. So, we got Bob's Red Mill Gluten Free Oats. I learned in order for something to be 100% gluten free, it has to SAY gluten free on the package. Even if the ingredients say 100% rolled oats, it doesn't mean there is no gluten in there! UGH. Anyway, so we gave her the new oatmeal Christmas day. Had a couple reaction diapers later that day. Gave it to her Monday morning, took 2 bites and was done. The rest of the day, she drank MAYBE 2 oz of water. She refused formula, juice, cookies, pear...everything. She layed around and was very lethargic. Took her to the doctor at about 6, told us if she gets any worse, take her to ER. Within 10 minutes of being home, she started throwing up. We figured out a babysitter for Cody and once she was here, we took her to the ER.
SEVEN and a half hours later, and needles trying to find veins in her right arm, left arm, right hand, left hand with no success, B was finally admitted and taken up to pediatrics. THANK GOD! The nurses up there were wonderful. Got the IV going in her foot (multiple nurses plus myself trying to hold her down, ugh) and finally, at about 4:15am, Brynn and I went to bed. While we sat in the ER, I learned that the oats that we were using were for sure GLUTEN free, but that they can be processed on the same machines that also process rice products. So this was a reaction from cross contamination with rice. =/
We were there til late Wednesday afternoon. She had some trouble tolerating her formula and bad diapers to go along with it. The Resident seemed to understand FPIES and EC/EG somewhat, so he seemed to take the lead in her care. The Ped still basically said she just had the flu. =/ =/ We have been home for a week now and she has been on a formula only diet. She is slowly starting to tolerate her safe foods again, thank goodness, the girl wants to EAT!
I'm a little worried that this is her new way of reacting. It was like she KNEW that something she ate/drank caused her to feel so yucky and that's why she refused everything? I took the time while we were at the hospital to hopefully spread awareness of FPIES and EGID to the doctors, nurses, dietitian....lol. Had to take advantage of the situation....it may help us or another family in the future! =)
SEVEN and a half hours later, and needles trying to find veins in her right arm, left arm, right hand, left hand with no success, B was finally admitted and taken up to pediatrics. THANK GOD! The nurses up there were wonderful. Got the IV going in her foot (multiple nurses plus myself trying to hold her down, ugh) and finally, at about 4:15am, Brynn and I went to bed. While we sat in the ER, I learned that the oats that we were using were for sure GLUTEN free, but that they can be processed on the same machines that also process rice products. So this was a reaction from cross contamination with rice. =/
We were there til late Wednesday afternoon. She had some trouble tolerating her formula and bad diapers to go along with it. The Resident seemed to understand FPIES and EC/EG somewhat, so he seemed to take the lead in her care. The Ped still basically said she just had the flu. =/ =/ We have been home for a week now and she has been on a formula only diet. She is slowly starting to tolerate her safe foods again, thank goodness, the girl wants to EAT!
I'm a little worried that this is her new way of reacting. It was like she KNEW that something she ate/drank caused her to feel so yucky and that's why she refused everything? I took the time while we were at the hospital to hopefully spread awareness of FPIES and EGID to the doctors, nurses, dietitian....lol. Had to take advantage of the situation....it may help us or another family in the future! =)
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