Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Wednesday, May 10, 2006

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.

6 Comments:

Anonymous Anonymous said...

What a great perspective you put on a long, frustrating day! God is good. I just stayed at home and waited for each phone call from you...putting my arms around you all in my heart and prayers. Jimmy, Aaron and I prayed and later Aaron and I prayed again. She is home in her comfy bed where she belongs...see you next week. Hugs and kisses, MOM

10:41 PM  
Blogger Briana Almengor said...

It's late, so I won't write much as I probably won't make much sense. Silly techs. My hubby had to calm me down when I read that part. I'm so glad you had James w/ you today. Isn't God so kind to give us such loving, supportive husbands?!!

We are continuing to pray for Livi and appreciate the updates.
WIll write more tomorrow.

11:13 PM  
Anonymous Anonymous said...

Okay, I am exhausted just after READING about your ordeal. Oh my! Well, praise God for all of the little blessings along the way. We were really praying yesterday!

HOpe you can just relax today! It will be a rainy day, perfect for staying in your jammies and lounging!

Take care!

Love, Les

9:05 AM  
Anonymous Krissy Evans said...

Hi!

My name is Krissy Evans, I am Maryann Plesnicher's daughter...I live in Pittsburgh and have been reading your blog daily and praying for you and your family.

Just wanted to let you know, that if you are ever in Pittsburgh we would love to have you stay with us. We are about 10 miles (15-20 minutes) from Children's Hospital.

We have two guest rooms and of course internet access!!! :)

Should you ever want to contact us, my email is krissyevanswork@yahoo.com

I will continue to pray for your little girl, and for her mama! My mom went through TONS of doctor's visits, operations, scares, blood sticks and unexpected medical bills with me (I had undiagnosed kidney disease and had three operations by the time I was three). She is to this day my hero! Hang in there, you are the perfect and God ordained mom for your daughter.

Blessings to you!
~Krissy Evans

10:17 AM  
Anonymous Anonymous said...

What a long day. I happy you are back home! i pray you are well rested! you are in my prayers, i PRAY that miracle for livi comes SOON! Have a wonderful day in the Lord!

Lots of Prayers,
Moriah

11:06 AM  
Blogger beth said...

your faith and trust in our Savior is so compelling. i'm praying for you all and love you alllll.
beth

2:32 PM  

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