Wednesday, September 12, 2012

Day 1

Dr. Kim came by this morning..and said we are going to try to get her up and moving around quicker this time..the longer they stay in bed the more the fever lingers around…and then the higher chance of pneumonia settling in to her lungs. So hopefully the epidural wont stay in for 5 days this time around…maybe try to stop it tomorrow but not take it out and then try to get her to take her oral meds and if it seems to be controlling the pain and doing good that way..then we will take the epidural all the way out..BUT he said she has to be eating and drinking more to do our goal for the day today is to get her to eat and drink more. Buts its kind of hard to do that when she is so sleepy so we turned on the lights and got her a dvd player with a George movie of course and she is watching that right now..The child life specialist also came by with some stickers and paper, and coloring books ..and a magnetic doll with magnetic clothes which all turned into epic fail. The movie didn’t last too long bc she was sleeping again with in 2 minutes.
We tried to get her to eat some lunch..ordered her some grapes and macaroni and cheese..she ate one grape and started dry heaving..and after that she wouldn’t eat or really drink anything all day. She kept saying owie tummy. We even tried popsicles..which she loves..and offered ice cream..which she also loves and no luck. They have been giving her zoloft for the nausea.
She developed a fever this morning. Has been running very close to the 84.5 mark…..just monitoring it with Tylenol every 4 hours. She still has been running a fever sometimes even with Tylenol in her.
Her breathing was starting to have a stride in it so we have been trying to get her to blow bubbles and cough but that is really hard when you have a really sleepy child who doesn’t want to wake up..
We had to give her an extra bullis/shot of her epidural bc of the pain. We were trying to move her on the side a little and it really upset her and started just screaming owie and grabbing her leg so we gave her one to control the pain. She also started the muscle spasms. She was sleeping and all of a sudden her legs lift up and she starts crying…and then her eyes start clinching together she got a dose of valium for the muscle spasms.
One of her anesthesiologists from her surgery stopped by to see how she was doing..she said that she did so great coming out of the operation..she just opened her eyes and was very calm…they were all surprised..and she said that she just loves her..she is so stinkin cute:)
Chaplin stopped by and prayed with us and over Avery…she also has a child with special needs so she was just nice to just chat with for a little bit.
We tried to chat via skype with the girls at home but she just really wouldn’t wake up and just wanted to be left alone to sleep.
We got an unexpected visitor today. Another mom who also has a child with ds too but she is with an organization called “Heartbeats for Down Syndrome” and somehow they heard that we were here…and the delivery special deliveries from the heart..Taken from there letter…..”Having a child with Down syndrome is such a rewarding experience. When medical complications arise, however it can be very scary and overwhelming-that’s where Heartbeats for Down Syndrome comes in. Heartbeats for Down Syndrome began with four mothers of children with Down Syndrome. Our goal is to alleviate some of the fear and anxiety that accompany a hospital stay by bringing some love and light to the family in the form of a care package. We personally deliver the care packages in order to meet the families. We are here to share our experiences and to offer help in any way we can.” 
WOW!!!! I am truly blessed to be part of such a great family..the Down Syndrome family!!!
This was all in our care package that they dropped off for us…totally speechless..speechless..candy..lots of all the right candy..gum. coloring books and crayons. art paper and paint. tshirt. llama llama stuffed animal. book light…white board. magazine for cards to CVS. also a couple giftcards to a couple different restaurants..(which I went to tonight and it was a nice relaxing supper..and SOOO good!! I mean look at all this…THIS IS AMAZING!!!   I so want to do this in SC!!!  This is just perfect.. 
My bed..where I try to sleep
Avery sleeping on her sleep machine
Her sleep mask that she wears every night..we brought ours from home
Our goal today was to get her off of IV fluids…and to eat more and drink more on her own and pretty much was an epic fail of a day..It has been a LONG day!!!


Laura said...

I've just caught up reading all your posts! First of all, Avery is such a trooper! For all that she is going through she is remarkably mature. Next, I LOVE that George has a cast too. What a great idea! Colin loves Curious George and I'm going to show him the pictures of Avery and George snoozing in bed together. Then, the gift bag you received from the moms. I'm in awe. Like you, I wonder if I can start something like that for our community. Last but not least, your bed. I sleep 6 nights on the "bed" when Ben has his heart surgery. Not only is it hard as a rock but all the hospital noises kept me up all night long! You need to get a massage when you get home:) Hope Avery has a great day tomorrow!

Debbie said...

Poor girl! Hopefully she's able to stay awake longer tomorrow!

Anna Theurer said...

Oh sweetie bear! It is so hard to stay awake, not be nauseous, cough when you have an epidural on board. Goodness, those meds make me throw up so I can just imagine. I love how George is her little buddy in bed with her keeping her company. Thanks for the update. May today be a better day!