Long long long day

Today was a really busy day..a busy, long day. We had our surgical consult at 10:30 (we left our house at 9:30). We saw a resident around 11 (he noticed she had an enlarged spleen...James and I had a good laugh at the obvious...). Then we saw the resident who was very nice. It was a quick visit really. Livi did pretty well. Almost let them listen to her heart and only screamed when they looked at her. (so that's not really a change from normal but it wasn't too bad either). We did find out that we will definetly be staying over night on Tuesday but that makes us all feel a little better because they will keep a close eye on her for a night to make sure she is doing okay. It will be a long night but a reassuring one and we will know that we only have to be there one night. Not as scary as the last time. By the time we got all the papers signed for permission for Tuesday's surgery it was after 12. We went down to the out patient clinic (where we always see the doctor) and they paged our Doc. It took a bit for him to come down (James' stomach was growling by this time and Livi was asleep). Her pulse oxygen was 98% (so the lungs are working well) but her heart rate was a little fast. So our Doc ordered a ton of blood work (more parasite tests), a urine sample and a stool sample. He then walked us to the heart lab and we got an Ecocardiagram (results...Perfect heart...Woo Hoo). So we did that then went back and had a chest x-ray (didn't see those results yet) then we went for the blood work (by this time it is 2:30). They removed the bag that collected the urine (they tape a little bag inside her diaper and collect it that way)..Shortly after they got a stool sample (we thought we would have to do that one at home and have Cynthia take it up tomorrow but we got it today). Unfortunately she also got her pants, onesie and socks messy so she was down to a shirt and blanket. Poor kiddo. Then we waited a while for then to figure out the labs. Since there we so many labs they had to figure out what was the least amount of blood they could take to run the tests (some tests have a range from 5ml to 10ml). Our Doc called and told them to take the least. Well they finally call our name and James went in with her and the story gets frustrating from here....

They go back into the room and the tech tells James to lay Alivia on the bed...Not a good idea for a baby. You can't just lay her down and expect her not to flip out. So James says No I'll hold her till you're ready...Which was 15 min later. Then two tech's come in and are talking quietly to each other about another tech (why isn't she in here...She's on the phone...etc). So they each took a turn blowing her vein (one on each side) then told us we should go home and have her drink a bunch of fluids and come back tomorrow. They acted like it was not big deal and not that important that we get these labs (um...hello we aren't doing this for fun..its really important!!). So we went back over the the out-patient clinic to ask our nurse what to do. This is where the story gets much much better. One of the nurses (Joanne) is really good at blood draws and she was there and so they went and she got it in just a few minutes. She even loosed the tournaquet (I can't spell) and instead of using all the little vials she just filled 3 larger vials up and then transferred the right amounts into the little vials. All in all a much better experience.

Originally we were supposed to wait around till the CBC came back but since it took so long (it was 4:30 by that time) they just said to go home. Livi didn't take a single nap (besides the 5 min on my shoulder around 12) so she fell asleep pretty quickly in the car and James and I didn't eat all day so we were so hungry and excited to eat when we got home.

Here are the things we learned today...There are no test left at Mayo (they ran some that our Doc didn't even order just to help out) and all tests came back normal. The test from Georgia (JMML) won't be available till the middle of next week (which our Doc thinks is a great sign because the test is a certain chemical mixed with her blood and if it is positive it would be growing like crazy). Her lymph nodes are much smaller than last week (Doc said he wouldn't have sent us to the surgeon for them if they were this small last week) and he was suprised how quickly her rash cleared up.

We also found out that family members can't be blood donors right now until we are sure that she doesn't need a bone marrow transplant. (just a precaution) Since family members might be a marrow match if she gets their blood then she could build antiboties and reject marrow in the future. So until they are sure only non-family members can donate. She is O+ so only those with O+ or O- can donate. But if you are either of these and are willing please let me know and I will get the needed paper work filled out. Again I would need birthday dates too. Thanks.

Thanks for today...
Great soup from Katherine (good to see you bright and early this morning) cards from Marmie, Jill Piper, Tony Versace (goes to church with my parents and works with my dad), The Moore family, John, Kristy, Hunter, Parker, Derek, Emily an Abigail Scherf, and Mother's Day cards for me from Becky Hoover and Chelly Miller (Becky's mom and Allison's grandma). Thank you all the card mean more to me that you know and someday when Alivia is older I will get them all out and show her how God used all of you so greatly in our lives during this time.