Countdown is on

Aunt T visited with Caroline today while I met w/ the home healthcare provider to make sure our house is "vent friendly." He went over the vent and said they should be able to deliver it to the hospital tomorrow. It will have to go through Biohazard but should be at her bedside by tomorrow evening. D/C plans are for next Wednesday. Caroline still feels really good. She is looking forward to some friends visiting now that she's able to go to the lobby.

Hall Pass

This is Caroline's RT, James "Gentle Giant". She likes him the best because he doesn't "suck her heart through her throat." With some oxygen and a little suction, they could rule the world! Seriously, he's been a great educator! The Pulm. shot our day pass idea down but did give her a hall pass. She cannot touch anything and has to wear a mask ( just as well ) but is able to leave her room for 30 minutes at a time. We'll take it! I think we'll go sit outside for a bit and get some fresh air. Any change of scenery will be nice.

Still waiting on our home vent. Caroline just had a long talk with the NP for the Pulm.'s office. We're going to get rid of this valve and try capping like we do at home. She's losing too much O2 through the valve and that's why her sats are dropping. Flu vaccine ordered for tomorrow-she needed "one more day." She finished her homework and is reading her magazines Meg brought her. Caroline wants me to upload more pictures. She has enjoyed showing her blog to the staff. Thanks for checking in.

Sleeping Beauty

At least she's sleeping good, right?! This is how I found Caroline lying in bed this morning. She had a good night. Nothing new today. Pulm. didn't round. Waiting on our vent. Doug and I were told it could take 2-3 weeks to get it. I just about fell onto the floor. A few distress calls later we should be getting it in 1-2 days....Hopefully the Pulm. will stop in tomorrow. I still have ques. regarding the H1N1 vaccine, etc. as it wasn't confirmed that was indeed what she had.

Happy Birthday, Aunt Jani! xoxo

Sunday afternoon

Another day inpatient is a day closer to home. That's our attitude today. Caroline's Pulm. came by and he's very pleased with her progress now and how she's tolerating the passy valve. The passy valve is a small piece that fits over her trach, kind of like her cap except it allows her to inhale through her neck, but forces her to exhale out her mouth. She started out at 45 minutes and graduated to all day as tolerated today. What they're watching are her CO2 levels. While she's awake and sitting up she's able to get rid of the CO2 but while she's sleeping she's not exhaling enough and the CO2 is building up. The plan is to bring the vent in from our home health co.--the one we'll have at home--and get trained on it. After we're checked off, and she's back to her daily routine, then she can go home. He said he thought that would be this week. We're cautiously optimistic. Caroline's ready to go home. We all are. The TICU is a sad, sad place, even when we're having a good day we're surrounded by so many children with chronic illnesses, and the majority of them don't go home, and many have no one in the room with them. So sad. We're so grateful Caroline's being discharged is an option, and so very grateful for our employers and coworkers who understand our need to be here, and for our friends and family who pitch in to help. We hope you all know how truly appreciative we are for everything you do for our family.

Friday am

Caroline started this new treatment yesterday. It's a cough-assist machine which blows/sucks air from her lungs triggering a cough. She's finally able to move some of those secretions and has a much stronger cough this morning. Finally--I was getting a bit concerned she hadn't improved, kind of hit a plateau, but is definitely better today. No d/c plans yet. Still weaning a little every day. Her O2 demand has dropped again and she's tolerating having her cuff deflated on her trach. I'm getting a lot of training by the RT, Gerard, who Caroline loves. They hit it off! Now she's shooting rubber bands to the ceiling and about to get a shampoo. I'm thinking this weekend is going to bring big changes!

Thank you everyone for your calls and cards. Caroline loves them all and read every single on of them. They're taped to her window and wall. She's so appreciative. Thank you again!!