Friday, August 21, 2009

Yesterday was a big day for Mya. She had a lot of tests of her little ears, nose and throat. They found that her right vocal chord has a temporary paralysis, caused by ECMO & the breathing tube, thus the reason for no voice. This could last up to a month, but it's hard to say when they'll repair. Your vocal cords help direct your food and air to the right spots in your body. Since Mya's aren't working quite right, eating & drinking isn't safe since the food could end up in her lungs instead of her stomach. Until they get a little better, she has to have a feeding tube back in her nose to get some nourishment. We have to learn to put it in, since we'll be taking her home with the tube in and it could come out easily on our clock. Definitely an unfun (even if I'm making up the word) thing to learn. Reason number 1,001 I'm not a nurse! She's also on some pretty high dosages of medication, so we have a long way to go with getting her back to "normal." We will probably be discharged on Monday, but will come back for a swallow test a week later. This test includes some dye that she'll swallow and they'll track where it lands. Until then we hope that her vocal chords start to get better so she start to eat again. She will have to start all over with rice cereal, baby food and then onto solids. Additionally, she's not able to hold her head up or sit, so we'll have to work on that again as well. I'm sure it'll come back fairly quickly, it's just a slow go of everything. Until then we get to continue snuggling our little one and she is still her sweet little personality, who loves snuggling with her new little friends! Thank you to those of you who have given her little cuddly critters!
Today we got to change rooms. We had a little 2 year old roommate last night who cried all night long... keeping all of us up. It's not as big of a deal when it's your kid, but it was pretty hard to watch Mya wake up due to his pain. Luckily they moved us this morning, Mya hasn't woke up yet! Luckily I got a nap in too. Our new little roommate is 3 weeks old, her name is Zoe. Please pray for her, she's awaiting both a heart and liver transplant, but has already had a heart surgery. I met her Mom & twin sister today as well- they've got a lot going in their family.

6 comments:

jaime.ledger said...

I am so glad things are going so well! I'm sure it will be nice to be home! Brody had that same swallow test done at Children's! It is a piece of cake! Hopefully they have no findings. I'm thinking of you! Please let me know if you need anything.

Jaime

Sawyers said...

wow - it's like a lot of baby steps are ahead.....how are you doing, other than having trouble with getting enough sleep? I hope you can hold out 'til Monday. STAY WELL, and know we are still praying for Mya's complete recovery - in HIS TIME. He makes all things beautiful in His Time! God Bless, Mom

Kathy said...

Glad to see you're moving in the right direction! I do feeding tubes all the time Julie! let me know if you need any help when you get home. I know Jen hylton knows them really well too! We're all here for support as you become a mommy/nurse! :)

Misses Monkey said...

Love that photo of Mya with all her stuff animals! SO cute!
Sorry to hear about here vocal chords! Will keep praying for a speedy recovery! Poor thing! She has been thru SO much!!!
Hang in there! You guys are Super parents!!
Meredith

Carissalayla said...

Mya looks so cute with all her snugglies!

Hilty Sprouts! said...

Mya will do great, she's a tough kiddo! She looks so happy and adorable surrounded by her cuddly buddies!

I will pray for your little roommate. That's a lot to deal with.

Jen