Still trucking along...

Caroline amazes me daily. She's done so well at home. She had a blast at our neighborhood Hallowen party last night. Good to see her out and about. Tate is glad to be back home too. They're having lots of fun together! Countdown is on for trick-or-treating. Always lots of fun. The Smith's will join us again this year. I'll be sure to upload some pics. Enjoy this beautiful Sunday...

Home Sweet Home

We made it home yesterday afternoon! Caroline did beautifully!! We made it through our first night without any beeps!!! She was all over the place in her chair yesterday and even got out with Sophie and Meg for a bit to see Mr. Chip's Halloween House. We are so glad to be home. She'll return to school on Monday.

Vent's Here!!!!!

Caroline's vent was delivered this afternoon. Must have been while she was visiting with Alexander, Lily, and Hope. They stopped by to see her and brought her lots of crafts. Thanks, guys! Really, could her day have been any better? She spent some more time downstairs with Kran and now we're back in the rm getting things squared away for tomorrow. Should d/c by tomm. afternoon. Her PICU nurse, Jenny, stopped by for a photo. Jenny was Caroline's nurse when she was born and has been with us every step of the way. We love you, Jenny!

Still No Vent

Nothing new to report today. Still waiting on our vent. Caroline's down to breathing tx's every 6 hours. We have noticed some blood in her trach but they think it's most likely from the suctioning--which has let up tremendously. She's happy and feels good. That makes taking care of her easy. Seeing her friends and getting out of the room really helped lift her spirits. She's "feeling the love" all right. I've hung every card she's gotten. Her room is rockin', for sure! She got a postcard from Jamal (her RT last wk) today who is vacationing in Boston. How cool is that? She's definitely made some new friends! They have taken very good care of her in the TICU. 17 days is the longest she's ever been hospitalized. We're all tired( haggard is more like it) and anxious to get home. Caroline was funny today. She pulled a blanket up over her head and while I pulled her in the wagon she made the sign of the cross and blessed everyone. Lots of "Peace be with you ('s)!!" Needless to say, Kran was very proud! She got to paint a pumpkin and decorate a cookie in the Zone. We're trying to get her back on a normal sleep schedule...Ahhh, sleep.....

So Happy Together

Had an awesome visit with the Green girls last night! So excited to finally see them. Dr. Julius stopped by for a photo. He's taking very good care of her! Still waiting on our vent. Still feeling good. Stopped two more meds. Hard to believe we've been here for 16 days. Thank you, Ms. Harrigan, for stopping by today. What a great surprise!! Thank you for all the goodies and for looking over her plural possessives!!

Surprise Visit

Caroline just had a surprise visit from Mrs. Sproat, Brooke, and Harry! Thank you for visiting and for all the goodies! She loves the poster from her classmates, too. We'll be sure to hang it in her room. Thanks a bunch! Good luck in Athens tomorrow, Harry! Hope it's a good run~

Friday am

Caroline and Catherine go head to head! How cute is that costume?! Never know who will drop in up here~ A laugh was a good way to start our day!

Caroline's still doing quite well. She's really moving her chest congestion and has had a few plugs. She's benefited from the Exsufflator for sure. The precaution lift has been nice and she has enjoyed getting out of her room. No new news really. Just waiting on the vent.

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!!

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.