Tuesday, April 15, 2008

Day 5 with chylothorax

Chylothorax is the name of Charlie's current condition. There is still too much fluid being drained from Charlie's lungs, so we are stopping his feeds all together. He will receive TPN in an IV behind his knee; that's just receiving the basic nutrition. He has also thrown up a couple times today; I wonder if they were trying to put too much in at a time through the NG tube. Oh well, we won't have that anymore by tomarrow. So more waiting and seeing. We'll have to see what happens when we stop all his feeds, then gradually get him eating again and see what happens when we do that.

All-in-all Charlie is just being himself: happy, playful, attentive, smiley, sleepy, etc. He loves to play with his toys and especially with Aubrey. Today the playroom had music therapy hour. The hospital just hired a music therapist to be the head of the music therapy dept. This is brand new for Primary Children's. The therapist, Lily, plans on having over ten MT's under her in the next few months! They also gave her a grant to buy over $10,000 worth of instruments! Those of you that know that I studied Music Therapy at USU understand how exciting this is to me. Charlie and Aubrey played xylophones, bells, cymbols, drums, sang, and had a great time! Charlie's eyes were HUGE the whole time, and occasionally we got a big smile out of him. He did a good job holding instruments on his own. Aubrey loved it too; she would try to sing along, and did a good job following instructions. We loved it!

Although we're not happy about staying at the hospital longer, it was generally a good day with a lot of fun. It helped to have my mom there to help me today-- Thanks mom!
Thanks everyone for your support.

3 comments:

Darren D'Orlando said...

Hi Seth and Shannon, just read your blog. I hope Charles has a speedy recovery. We love you guys so much!!
You will be in our thoughts and prayers tonight. Thanks for keeping us in the loop,

Sincerely,

Shauna and Darren

Matt said...

We send our best as well. Please let us know if there is anything we can do. As always Charlie and your family are in our prayers. Matt and Angela

Anonymous said...

Shannon and Seth, We are praying for you and hope your little one gets to come home soon! Have fun in music therapy!! I am jealous! Jaynie Brokaw