Surgery Date

Caroline's scheduled to have her VEPTR revision on Wednesday, Sept. 24 at Scottish Rite. She'll remain on O2 until then. We're praying this surgery will improve her lung capacity. She told me yesterday that she couldn't wait to have her surgery because it would help her breathe better. We're on it! Pre-op with pulm is next week. SP

Jonas Brothers

We had the most amazing time at the Jonas Brothers concert last night! Thank you Kristi and Logan! The kids signed the tour bus and sang and danced the night away! It was definitely a night to remember!

Tate's Meet & Greet

Tate met his teacher today. Her name is Ms. Catherine and he loves her! He got to meet his classmates and play for a bit. Ms. Catherine read a story during circle time which was a hit!

Caroline made it through the first week of school and had a great week. She had a blast at her school's Welcome Back Picnic Friday night. Her ST at CHOA starts this Wednesday afternoon and PT will resume Monday afternoon. I'm sure the homework will officially kick in this week!
***Jonas Brothers concert is Wednesday night!!*** Caroline doesn't know she's going yet! It'll be a great surprise, I'm sure! SP

3rd Grade!!

Caroline started school on Monday and is in the third grade! She had a wonderful first day. The neighborhood kids walked to school together. She and her buddy, Sophie, walked side by side. She loves her teachers and has some familiar faces in her class. She came home so upbeat and happy. I hope that the first day set the tone for the year. If so, it's going to be a great year! Caroline was almost giddy when she got home. Probably a lot of it was just relief that the first day was over. She was anxious and had some trouble sleeping the night before. No real homework just yet but she's staying busy in her summer scholar workbook. Big math test today to determine math class placement. We're looking forward to the school's welcome back picnic Friday night! Tate starts school in a couple of weeks! SP

Saturday Post

Caroline's getting better daily I do believe! Her sats are higher without O2 during the day. They're still low at night but she's resting well with the O2. Doug and I are getting used to the beeping. Gosh, it's been so long since she's beeped. She hasn't been hooked to anything other than her feeding pump since she was an infant.

We spent some time at the pool yesterday and today. Swimming is great exercise for her lungs. I'm seriously considering restarting her swim therapy at the aquatic center this year. That will all depend on when they can do her ST at CHOA and when she'll have her art lesson. Can't deny the art lesson as it's her most favorite thing to do.

Caroline went to meet and greet yesterday and will have TWO teachers this year. They (Ms. Meisch and Ms. Timoney) seem like a perfect match for Caroline. She's excited about school and seeing her friends. She's always eager to learn. It's going to be a great year! SP

Caroline's home

Caroline was discharged yesterday. She had a good afternoon and evening. Caroline did require oxygen during the night which is a first for her outpatient but we're hoping that will taper off as she heals. Also, her surgery will hopefully open up her lung space. Tomorrow's Meet & Greet at her school and she's looking forward to meeting her teacher! We're all glad to be home and the Cobler's made us some fantabulous spaghetti! What a treat! Thanks guys! SP

Tuesday Discharge Plans

Caroline required some O2 last pm so they felt it safe for her to stay another night. She did well today. She had a rash today which Benadryl helped. Not sure what caused it. The Pulm. will discharge her tomorrow with or without O2. Home health will meet us at the house to set up just incase. We never were able to see the Ortho and don't have a reschedule date yet but they have some baseline labs now for future reference as far as her O2 and CO2 levels are concerned. Her CO2 levels were "dangerously high." It should be below 20 and was 39. She was able to get a new G-button while inpatient which has helped a lot with her feeds and leaking. Plus, it saved us a trip! I'll write once we're home or sooner if things should change. Good night! SP

Hospitalization Update

Caroline's making progress~ slowly but surely. Her O2 is down to .50 L and she's still fever free. She's sleeping a lot, but I think she's just catching up. Her CXR showed a LLL pneumonia/atelectasis after all. The antibiotics are working. Caroline's chest wall deformity (scoliosis/kyphosis) does not allow her chest to move well enough ( if at all) to "cough it up." We're doing lots of CPT and breathing tx's. Baby steps...........another 2-3 days inpatient per the Pulm. tonight. SP