Monday, April 28, 2008

Thank God for Nice weather

So we're still here and waiting for fluid to drain. If the surgery was successful we'll come home some time this week. Charlie's room looks awesome though!
I've felt happier this week. I'm not sure why, but there is alot to be thankful for. I think sunny days contribute to better countinences and attitudes.

Friday, April 25, 2008

Surgery for Chylo Today

So I haven't posted for a few days because every day was the same. Every day we would evaluate his chest x-ray to determine the next step, adjust his lasix and feedings, and wait to look at the next day's x-ray. Wednesday he was acting pretty grumpy and had me worried, but yesturday he was doing great and I was pretty optimistic about going home this weekend. His x-ray this morning showed a lot of fluid build up, so Charlie is having surgery this afternoon. I have to admit I was pretty disapointed after 2 weeks of trying to avoid a surgery and looking forward to going home. But we've done all we can do medically and this is the only option left to get it to stop leaking around the lungs.

They go in through an icision through his chest and close off the leak of his lymph system (for a very simplified explaination.) This is successful 80% of the time. If it's not successful...well, let's just worry about that later if we have to.

Charlie's room is pretty decked out now. We'll have to take everything down, but I'll put it back up when we're back on the floor. He'll be in the PICU for just a day or so.
We recieved a stuffed airplane from Toys R Us there isn't anything to identify who sent it. Thank you whoever did. It is so cute!
Thank you, Laura, for the Mickey Mouse airplane and for stopping by. The plane is very fun and adds to the room.
Thank you for the quotes; they are in his room as well.

Hopefully Charlie will be home in less than a week.

Tuesday, April 22, 2008

No More Chest Tube!

The chest tube came out today, and Charlie can eat by mouth. Charlie ate four ounces this morning, but he seems to be figuring out that we're giving him the yucky formula, potagen. Over the next 42 hours, we will still be watching x-rays to watch for fluid build up. If there is fluid build up around the lungs, we will have surgery; if not, then we'll be going home...
Charlie's room is looking a lot more fun. Aubrey has been doing a lot of art work in the play room, and they printed off a bunch of airplanes we've been coloring. You can come and see it any time. We are still in 3084 in surgical.

Friday, April 18, 2008

Airplanes

Yes everyone we are still here and trying to figure out this draining fluid thing. Hopefully it will be under control soon.

Since we will be here for a little while, and we will surely have future hospital stays, I would like to make things a little more fun for everyone. Charlie's room at home is starting to take on the airplane theme I've had in mind for him since we were pregnant. I would like to bring this to his hospital room, so it can feel more fun, inspiring, and more like a home.
I was hoping all of you could help me with this. Please send anything to me about airplanes: quotes about planes or flying or soaring, cut-outs I can stick on the wall or crib, signs, airplane toys.... Be creative! I'm not picky. The hospital is not that picky either. For those of you wondering how you can help us, this is it.
Thanks.
Shannon

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.

Monday, April 14, 2008

Warm Sunny Day

So it was another day at the hopital with ups and downs. As fluid drains from Charlie's lungs, naturally we expect the flow to slow down. During Sunday night's shift, about 20cc of fluid drained out. Today we were hoping that that number would decrease below 10cc, so we could clamp off the tube, see how his lungs did without draining, and make steps toward going home. Instead he drained 40cc today. So we just have to keep watching. If the amount continues increase, that is bad news. Hopefully tonight's shift will go well and the fluid will stop developing and there will be less to drain, and I'll have good news in the morning. It's all just a waiting game. There is no time limit to how long this could take to clear; anywhere from a couple days to a few weeks or more. Just wait and see.....

On the upside, it was a gorgeous day today! Aubrey, me, and especially our nurse all really wanted to go outside. So we packed Charlie up and got him comfy on a red flyer wagon, and went out on the patio. Charlie was all smiles when we first went out, but he got tired fast. By the time I rented a camera from the parent resource center, we was pretty tuckered out. This is one of his first times really being outside and enjoying the sun, since it's been so cold since October when he was born. It was so bright we could hardly open our eyes!

Another adventure today: We have been moved into a room where the door does not latch. It didn't take long for Aubrey to learn how to get it open and run away. When I'm holding Charlie, it takes a little while to put him down before I can chase after her. That gives her pleanty of time to get really far. By the end of the day, every nurse on the surgical unit was keeping an eye out for her. She almost made it onto the elevators by herself!
Our blog has the pics I took today of our little outing, and some of Aubrey's favorite places to run to like a big bubble fish tank.

Sunday, April 13, 2008

Back to the hospital after second surgery

All,Charlie is still in the hospital. It seems that the fluid thing is more of a challenge to figure out than we thought. There is fat in the fluid that they are draining from Charlie's lungs. This lead the doctors to beleive that his diet needs to change. They are now feeding him some perscription formula. We don't think that he likes it. When he started on it he wouldn't eat more than an ounce or 2 per feeding. He now has a feeding tube to suppliment what he isn't eating. There is still alot of fluid draining from his lungs. The doctors aren't exactly sure how long we will be in the hospital. Today I stayed home with Aubrey because I have a cold. Shannon went to the hospital to be with Charlie. Shannon said that he played alot in the morning then slept alot during the day. He played a bit a while ago, but is sleeping again. On a brighter note, the doctor that saw Charlie on Thursday night said that his heart sqeeze is getting stronger. He was suprised to see a difference since the last time they looked was a week and a half ago. Everyone, who is not sick, is welcome to stop by and visit.