Nov 14, 2010

Not so fast

Well... Mia went a day without having fevers non stop, but they have returned.  Her fever yesterday was 102.5  She is still glued to me without any signs of letting up.  Two nights ago slept with her arms around my neck... super sweet, but not the most restful sleep. I am happy to help her rest because if you know Mia she is always happy and she is definitely NOT HAPPY now.  I pretty much go from distraction to distraction trying to get her comfortable.  She thinks everyone who walks through the door is going to draw her blood and it takes a solid ten minutes to convince her otherwise.  Although she does start every morning with a blood draw so I understand her paranoia.

They gave her a few shots to stimulate some bone marrow growth. Her counts are continually low and her body needs to replenish her blood to help fight this off.

Her gums have not improved.  The gums behind her teeth are lower than her actual teeth... it is as if she is un-teething or something.  She still hasn't eaten anything, but is doing OK with the fluids.  I know she wants to eat and it is heartbreaking.  When something goes in it just comes out bloody.  I can't convince her to to eat anything soft either- she pushes everything away.  I have to force feed her meds and that has closed the door to any spoon fed nutrition.

She toss and turns in delirium most of the day but she does have moments of clarity when she will start labeling everything.  "mommy" "ba" "baby" "lalaaaah" "night" She does a lot of asking for "mommy" and "mimi" when I am holding her- when I say asking- I mean yelling.  She also says "no" over and over.  I think she is just ready to get out of here.

I think our ticket out of here will be when she doesn't have fevers and her gums go down at least a little.  I know they would let me take her if she would get down the fluids she needs, but they don't want to release her until the fevers are gone.

The Good news is:  I got to change her shirt... yay!  Her hair is still a ratted mess from all the rolling around in confusion.  I have my work cut out for me. 

Yesterday some volunteers stopped by... I was able to run to the cafeteria lickety split.  I love that college students stop by to volunteer at the children's hospital.  It is so sweet!  Usually we have had grandma and grandpa volunteers.  They are all neat people!

I wish there was something better to report, but it's pretty much the same status as when we showed up.  Fevers, swollen gums, IRRITABILITY :-)  She has scheduled tylenol that helps her get to sleep, but once she is asleep she wakes up because of the beeps, arm straightening, vitals, medicine, etc.  It's sad to say but not even watching Olivia on Nick Jr makes her happy.

I can get her to smile if I laugh hysterically.  She has always been a social laugh-er and can't help but smile if I force laughter.  When she does smile she looks like she just stepped out of a dentists office.  Her little cheeks try to maneuver over those gums and just looks like she had some major dental work done.  We had a good visit with Auntie Heather last night- Mia was fussy, but allowed me out of the bed- thanks Mia :-)

-pictures from a happier time. Mia is so cute! I love how Ellie is assisting Sam on the ride-on toy in the background. She is all over that baby...and from what I hear has been a fantastic fill in mom while I have been gone. My kids are coming up today! Can't wait to see them. Hooray! They have been asking to come up all week. The nurses give them ice cream when them come. I personally would rather give them ice cream to stay home :-) I don't like them in a hospital. I want to keep kids in a hospital to a if possible. Too many germs!

Once again... hopefully she will turn a corner soon.


Katie said...

I feel so bad for Mia (and you). Will say some prayers for her to start eating/drinking and fevers to quit! It's always something, isn't it?!? Thinking of you and hoping you get home so soon.
Love you guys...

Deb said...

Oh it's too sad to see Mia still sick. I was driving around in my car the other day praying for her. I think it's cool that I get to pray for her in my day when it's night time for Mia!
Sending love, hugs and prayers.
Get well soon little Mia.
deb xxx

Sarah said...

Oh, Meems! I am so, so, so sorry to hear about little Mia. Poor girl! It sounds so terribly painful, and I am so sad to hear that it is just not going away. You guys will definitely be in my thoughts and prayers. Here's hoping it's a big goodbye to fevers and huge swollen gums - soon!!

Hang in there!! Loves and hugs to you both!


Poor little thing, I feel so bad for her... and you! Prayers for quicker recovery! I would get some of those coconut white chocolate bars I remember you love and bring them up to you, but baby Caleb in the hospital might not be good. I will have one waiting here for you though! Hang in there.

Abbie said...

Hi Mimi. Do you remember me? I did a run-a-thon and my brother a bike-a-thon back before Mia had her transplant. I had quit following along a while ago but found you guys again about two weeks ago. So sad to see Mia back in the hospital but was so happy to catch up and see all the progress that she has made! I hope things start looking up again soon. :)

Steven and Whitney said...

What a toughie for baby Mia. Give her a love. You'll all be home soon.

Jen, Paul and Gracie said...

I am so sorry you guys are still at the hospital and Mia is having a rough time :( We are going to be at the hospital tomorrow (Tuesday) for a sleep clinic appointment for Gracie at 2pm and would be happy to bring you something for lunch. I remember how tough it was to try to get to the cafeteria when we were on the floor!! We could go to Worldwraps and get a smoothie for Mia too (maybe something cold would feel good on her gums?) Just send me an email if that works for you: