If I let them see me smile, they will poke me with a needle....They are beginning to think that these fevers are cyclical and are just Elaina's "new normal'. Here's the glitch. Dr Murphy from South Davis came and evaluated Elaina on Monday and said that she thought that transferring Elaina was possible, but not until her condition was "more predictable". So now the plan is to take blood samples every day for a week, trend her temperature hourly for that week and when nothing cultures out and her temperature is all over the place we'll just call it her "normal" behavior and then attempt to convince the doctor at South Davis that she is stable. So, she's not stable enough to go to the floor, she's not stable enough to go to South Davis (and they do hospice!), and I still have the option of taking her home. I think that is just crazy at this point. If she's not stable in a hospital environment, then how could she possibly be stable enough to go home with just Mom!?!? That's just setting me up for failure, so I'm going to hold out for South Davis.
(Thanks Kathy for the cute sheep! She adores it!)Nothing much I can do but wait and watch. I've been moved into the back of the PICU (bed 28 for anyone that is local and wants to come say hi!) where it's quieter and I can sleep in the room and have my own bathroom (no shower). It's further away from all my heart baby friends, but I guess I'll survive.
Ben started Kindergarten yesterday. He's so darn cute!!!! He absolutely loves it. He woke up early this morning and was super worried that he was late for afternoon kindergarten. He gets to pack a snack for recess and has already made friends at the bus stop. He also informed me that his loose tooth is ready to come out. It's NOT, but he is so ready to grow up! So here are a few pictures from his first day:
Standing in front of the school
Ready to go inside!
Making new friends in the playground.
Showing off their wiggly teeth! :)
Sitting in his spot, ready to learn!!!
6 comments:
Oh, they grow up too darn fast! Ben looks like he's ready for anything... hope his first day was great!
Poor little pin cushion:0( Its just not fair that these little one's have to endure such things.
Praying that everything continues to come back 'negative' (in the good sense) & that South Davis will accept her!
Ben looks so ready to learn and ready to make friends and ready to be 15! What a big boy. Sooo handsome, too! I hope he is enjoying himself as much as it looks like he is.
We will continue prayers for your sweet baby girl. How crazy that they would send her home, but not to hospice care??? Hmmmmm. Well, praying you can get to hospice care soon. That's another step in the right direction. xoxoxoo
Ben is SO tall...glad he LIKES school...hope it stays that way!!!
Poor Miss Elaina...so, did they remove the broviac line?? I just start yelling when they try to draw Isaac's blood. I tell them that they DO NOT get to draw it daily...he's going to run out! (and he's running out of veins)...These poor little kids. Is she able to rest more now that it's quieter??
And....are they doing PT with her to get her up and moving around. AND...are they still letting you hold her??
Wish I was closer to come by and visit you guys!!!
Thanks for updating us!
love,
kathy
Ok I'm totally with Kathy...I'm always questioning ANY invasive procedures. They've already been drawing often. I know they are trying to define her trend, but that's torture! By the time Angelina came hm @ 3 mos old they couldn't even start a picc anymore!
Sorry, not trying to add stress! Glad you have a nice quiet room. Hope you can move on real soon!
And your Ben what a handsome dude!
XOXOXOs
Ana
Ben looks so grown up. Isaac shocked his new teacher today at his assesment, she wondered why he was in special ed. It's funny to see the look on their face when he reads every word they show him. However he was m ixed up with his colors and shapes. This will be an interesting year. I will have to come see you and Elaina soon, i didn't expect you to be there so long. If you are still there when Isaac has his ear surgery, i'll visit you more. Take Care, I think of you and Elaina often, I'll keep praying. Love, Djinni
It was so nice to talk to you today in the surgery waiting room. I wish I would have been able to come meet Elaina. Brylee's surgery went so well we were able to go home shortly after it was completed. She was pretty grumpy waking up, I thought we had better just leave and get situated at home. Hope you have a great night!
Diane
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