a lot has been going on since i last updated! kaiya was released from the hospital may 19th without any real idea of why she was refusing to eat. she went home hungrier than ever and was eating everything in sight for awhile. she left the hospital at 32 lbs and at her doctor appt 6 days later was already up to 36 lbs. we thought she was on her way back to her normal self. then on the last day of school she woke up with a cough (june 4th). she seemed sleepier, but it made sense with an oncoming cold. i let her rest, and the cough got worse. she sounded really congested and miserable, she wasn't eating, but she was drinking still. mommy started to feel the cold as well so i figured we were both just coming down with something. my throat felt like i swallowed glass so i could understand why she wasn't eating if she was feeling the same way. the week went on and her congestion seemed to be going away, she coughed less, but she wasn't improving with eating - she was actually eating less. so mommy finally conceded and made an appointment with the pediatrician for friday. we went in and she said kaiya's lungs sounded clear, there weren't any signs of infection in her ears or throat. she sent us for a blood test to check akaiya's seizure med levels since she was so sleepy. well, the blood test showed a really low platelet count. it was decided that she needed to be admitted to the hospital. i figured we were going to be admitted b/c kaiya had barely drank anything and had not eaten for a couple days, the whole platelet thing threw me off though. so we get to our room and i let them know that kaiya is a really hard stick so they needed to send in the professionals...10 sticks and 5 specialty teams later it was decided that an ng tube should be placed to hydrate her and they would look for an iv spot the next day if it was necessary. well, kaiya's mom is a klutz and ended up pulling out the ng tube the next morning b/c the tape got stuck to my arm...ugh. so they decided to try for an iv again. boo. we had a really great nurse come in and she was able to get a vein on the first try. unfortunately it was in kaiya's wrist. very painful spot. so we seemed to be in a bit of limbo b/c akaiya still wasn't eating, she was very sleepy, and no one could figure out why. kaiya then started having episodes where she seemed to be in a lot of pain. this kid is not usually a crier and she would flinch and start screaming. the docs were brought in to try and figure it out - and because they don't really know her they figured the crying was typical for a kid that was in the hospital. how is it typical for a kid to be laughing one minute and screaming the next? the thing they were most focused on was that she wasn't taking in enough nutrition to support herself and so it was decided that she needed a g-tube. the doc told them to reinsert the ng tube to make sure she could tolerate feeds and the surgery date was set. i was ok with her getting the g-tube. i actually had an appointment with this gi and that was one of the things i wanted to talk to him about. i was upset tho b/c i felt like there had to be a reason why she wasn't willing to eat. and there definitely had to be a reason for the pain. so finally her pediatrician came in and i told him my concerns and suggested that it might have something to do with her bladder? she didn't have any signs of infection, but maybe a kidney stone or something? she had had some distension in her lower abdomen that suggested maybe her bladder was holding on to the urine too long and maybe that was causing pain. so a renal ultrasound was done and everything looked great. then another doc came in and felt her bladder and suggested that if she continued to show signs of pain that there was a medicine she could take that would help loosen her bladder and urinate. well wouldn't you know that after all that the kid showed no signs of pain anymore? she has been back to her giggly wiggly self (a kid i haven't seen since before she started the phenobarbital honestly). i don't know what it was, or if it's really gone, but she seems to be feeling MUCH better. the nurses are all amazed at the change in her. she is smiling at them when they come in, she looks and responds when you talk to her. she's happy as a lark. she's bouncing around the bed. she's back to my old akaiya.

g-tube surgery is still set for this afternoon. i know that it is in kaiya's best interest to have the g-tube. she really doesn't ever drink enough, which may be why she has issues with constipation. and when she gets sick she loses weight so fast b/c she refuses to eat. so with this i'll be able to keep on top of all those issues. and she'll still be able to eat orally. i still don't know how i feel about the surgery though. i know she'll still be able to eat orally, but for some reason i feel like it's taking away her last "normal" function. plus it's another open port that just seems like an invitation for infection...oh well, just another twist on the trisomy highway.