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!!

Wednesday pm

Caroline is still in the weaning process and is on about 2 liters of oxygen today. The Pulmonologist did come by and had a long talk with me about Caroline & her restrictive lung disease. When Caroline came into the ER her CO2 levels were dangerously high, and he said they thought that they could have been high for some time. He thinks Caroline will benefit from a vent at night at home. She just doesn't have the ability to move air well enough not to have support, especially after this illness. Our plans are to continue to wean here off some of this O2 and get trained in the vent dept. I assured Caroline that the vent would fit in Aunt T's car and Sophie's room. That made her smile.

Wednesday am

Haven't seen RT this am and they haven't adjusted her settings-not sure what the hold up is but we're ready to move it! Caroline's working on some math worksheets. Feels good today. Nothing new to report until we see the Pulm. and RT. I'll post again after their visit.

Tuesday am

Caroline's up this am coloring her Square 1 Art project for school. It's nice to see her up. The RT and Pulm. just left and they're going to start trying to wean O2 and pressure support this am. She's trying to get used to the feeling--doesn't like it much but is not complaining-ALWAYS a trooper! They're going to let her be of the pressure support for four hours today because they don't want to push it. She's still on a good amount of O2 (3L) which the Pulm. hoped would have dropped yesterday. We're going to work on getting it down today. Her chest still sounds super junky but they assure me she sounds better and is moving air better. They put Caroline on Contact Precautions yesterday. The trach cx's came back so they thought it safest to gown/mask/glove it. They're calling this influenza (even though the rapid test came back negative and viral cultures weren't done) and pneumonia. We're taking it one day at a time. She's getting stronger and better every day.