Sunday, May 18, 2008

Things are better

Well, it's late but here's a quick update. The oxygen tanks are gone! Yeah! His heart and lungs look just fine and we don't have another check up until the end of June. He's still not eating on his own; early intervention is coming next week to evaluate him and help me. I feed him every three hours from about 6am to 9pm, and maybe once at night. We tried to take the feeding tube out and see what he did on his own, but he only ate about 8oz a day...NOT enough. They gave me some medicine to help keep his food down, and as long as I give it 3-4 times a day, he keeps that down just fine. So things are better, and I feel like we can start moving forward again.

Tuesday, May 6, 2008

A rough weekend home

Charlie is home; he came home on Friday. It has been a rough weekend. I have to feed Charlie every three hours including through the night with the NG tube and syringe. He was pretty good at sleeping through the night a month ago, so I'm pretty disapointed and tired. There was miscommunication with the doctors which was frustrating, and I was also told that my insurance was not going to cover Charlie's formula which is $60 for a small can that I would go through in a few days. That's now cleared up and insurance is covering it, but at the time, it was frustrating. My car was packed full of stuff, and there was much to do at home. Aubrey made sure to keep me on my toes by vomitting all over Charlie! I wasn't even suppose to bathe him for a few days because they just took out his picc-line that morning. Charlie of course started throwing up on Saturday, and has continued doing it at least once a day including today. I saw a pediatrician yesturday, but he thought Charlie was fine. Oh- there's a diahrea problem too. Did I mention his stuffy nose and cough? Seth was throwing up on Monday too. There is some good news: I've done a lot of laundry and only have five loads left, I have also thrown out all the food that has been going wrotten in our fridge this past month, our mail is now narrowed down to two piles, and the weather has been great! We open the windows and Aubrey got to swing today. Seth also picked some dandelions and made a bouquet for me...how sweet...!
Some people have brought meals, and one night I was the only one that ate dinner, so I haven't really had to cook since we've been home which has been nice.
So I'm tired and grumpy, and I'm going to sleep for 1 hour and then feed Charlie again. Really things are better than it feels like they are right now, but we'll get through it. Tomorrow is another day.

Sunday, May 4, 2008

We're home again!!

I think we missed the update telling you that Charlie came home on friday. Not long after he got home Aubrey let us know that she was sick by puking all over him. Now he is sick too. We were given strict diet plans and really expensive perscription formula to feed him. Well, those plans have changed. After speaking with a Cardiologist about the new chain of events Charlie is on Pedialite (thank you Jeanette) to keep him hydrated. Hopefully this doesn't cause fluid buildup around his lungs. The doctors had us on a plan of feeding him every 3 hours. Now it is every 1.5 hours half the volume. He is feeding through a tube. Good thing because he refuses to let a bottle come anywhere near his mouth. The disgusting formula (the expensive stuff) that he has been recieving has made it so that he won't eat from a bottle. In fact, he really won't have much more than a pacifier. He makes sure it's a pacifier before it goes into his mouth. Shannon was advised at the hospital about how to help him begin to accept solid foods with this new issue. I guess it is going well. He has progressed enough to let a spoon slightly into his mouth when you open his mouth. We are glad to have Charlie back. We love his smiles. His coos are really cute!

Thursday, May 1, 2008

Chylothorax for Dummies

So I finally found something that will help everyone understand why we've been at the hospital these last three weeks. Go to https://intermountain.net/portal/site/pcmcpub/
then in the middle of the page there is a section called Health Information for Patients and Families. Under that, is a link called "Let's talk about...health Brochures." Click on that and then on Chylothorax. Here is a simplifies way to explain Charlie's condition.

The docs have been talking about us going home since Tuesday. Maybe it will actually happen tomarrow. We'll see. We're happy and I don't mind being here though.