Christmas Blessings

We kicked off Christmas at Stone Mountain on 12-23 with my sister and her family. The kids had a blast on the train, loved the sky lift and thought the 4D Shrek movie was the bomb! That certainly got us in the spirit!

We spent Christmas Eve with Doug's family at his parents house. We got to watch baby Pierce (so cute) open his presents. Caroline and Tate followed their cousins Claire and Cole around for a good part of the night. Cole gives a mean typewriter and gave Tate quite a workout. Claire sat with me and Caroline and told us about being a senior in HS and getting accepted into Berry College. We're proud of Claire. She's a sweet girl and will do well.

Our family had the best day today. The kids were healthy and happy. Santa hooked them up and we enjoyed time with family and friends and "BCF's" (best cousin friends!LOL) They laughed and played, laughed more, played more. Their laughs were contagious. Couldn't help getting a little giddy myself. This was our first Christmas without my grandmother, Nanny. We sure do miss her. Mom surprised Trisha and me with videos she had put on DVD's of us growing up. Sniff, sniff. She presented them with a box of tissue. I blew through mine in less then 5 minutes. Caroline enjoyed watching me grow up and finally agrees that yes, she does look a little like me afterall! :-)

It was a wonderful Christmas making many new memories.

Goodnight and God bless!
Shannon

Christmastime

Hello all and Merry Christmas!

The kids have been busy getting ready for Santa. I discovered that Caroline's quite the gift wrapper! She's a pro and what a huge help! She and I stayed in one night and wrapped, drank hot chocolate and watched Elf. I so enjoy her company. What a blessing she is. Tate's a big help, too. He's sure to move the Gingerbread man daily to count down the days 'til Christmas.

Caroline's trach infection is back and she's starting a new antibiotic today. This one will be given via her nebulizer directly into her trach. We're praying this will do the trick and she'll feel good for Christmas. Her Thanksgiving, well, sucked. She felt so bad and really struggled to breathe. Hopefully we've caught this one in time. Any cold is going to turn into something as she just doesn't have the lung capacity to keep things moving in her chest. Plus, her newly diagnosed pulmonary hypertension is an unwelcomed added feature. Her Pulmonologist added a diuretic to her meds a couple of weeks ago to help drain the fluid from her lungs. It helped. He had also put her on a new antibiotic for a micoplasma pneumonia/sinusitis. Either one did the trick. It's a wait and see with this infection.

Doug's hunting this weekend. He hasn't been in years! I'm thinking we'll go see Santa and take it easy. Can I write that in the same sentence?? The kids have their lists ready! Caroline wants a keyboard, camera and some wigs! Tate wants a light saber (Actually, two. One green and one red!) and anything else he has seen on TV. They're both sooo excited!

Pulmonology Follow Up

Caroline has a much needed follow up appt. with her Pulmonologist this morning. She has continued to cough since the week before Thanksgiving. Her O2 requirement has continued to be high as well.

Happy Thanksgiving!

Caroline's had a rough weekend. She started with a cough Tuesday night and by Wednesday was really working hard to breathe. She had a positive trach culture and was put in an antibiotic in addition to steroids galore to help with the inflammation, breathing treatments every four hours, lots of chest pt and sxning!!! We've taken advantage of being home and put the Christmas tree up. The kids are excited about decorating it tomorrow! We're going to take it easy this week and enjoy being out of school! I love having the kids home.

Caroline tried a wheelchair dance class last night and really enjoyed it.

Triple Threat

Caroline's teacher sent a note home today. It read,

"3 E+ is called the Triple Threat. Out of the whole class, only two people got the triple. Go Caroline Go!"

That's my girl! An "E" is a 3rd grade "A."

No big news really. Caroline saw her Pediatrician last week because she had some nasal and chest junk that wasn't clearing on its own and Dr. Hassel diagnosed her with "junkola." Nothing a few days of Zithromax won't clear. She even gave her another 10 days of Omnicef to back it up. She seems to be feeling good. The antibiotics will keep things at bay.

The kids had a great time trick-or-treating with their cousins and neighbors. My sister and her gang spent the weekend with us. It was fun having them all here. I'll post some pictures soon.

Last night was Kincaid's pizza night and both kids won the ticket jackpot. Ohhh, they live for those tickets, don't they?!

We want to congratulate our friend, Sydney, and her team, for placing second on the softball tournament. Way to go, Syd! Can't wait to see your trophy!

The kids are out of school. We're headed to the polls to vote as soon as Miss C decides to wake up!

Hope you all have a healthy, safe and fun week! Fall is definitely in the air. Can you believe Thanksgiving is in a few weeks? We have so much to be thankful for this year! SP

Dr. Dennis Devito-Children's Orthopaedics of Atlanta

Caroline had her post-op appt. yesterday with Dr. Devito. He cleared her for PE and PT and thought she looked good. He doesn't need to see her for another 3-4 months. We are so grateful for him and the excellent care she receives.

High School Musical 3

Thank you Karen and B 98.5 for the tickets! The girls loved the movie!

Report Card

Doug and I are so proud of Caroline. She got her report card today and did extremely well. Great job, Dink!

Cardiology Appointment

Caroline saw Dr. Stevens today and he said her numbers have improved since her surgery. He said that she has mild pulmonary hypertension and is most likely related to her airway and spinal issues. He did not feel she needs to be followed by a Cardiologist but will continue to do ECHO's prn per the Pulmonologist's orders.

Caroline started an oral steroid today. We'll hopefully see a difference in her oxygen saturations as the desats may be related to inflammation. She's bouncing off the walls today! At least she's bouncing! Right?! SP

Back to School

Caroline returned to school today. She said she had a good day and had fun. Only a little oxygen in the am but did great the rest of the day.

Here's a pic from an afternoon with her buddies.

Thank you Sevin family for our dinner tonight. We truly appreciate it!

Go Dawgs!

Star Student

Tate enjoyed being Star Student last week and was so proud to be a bunny with his friend, Jack during their Noah's Ark presentation. Tate loves school and is having a great year.

Caroline had a great day today! She saw the Ortho. today for some drainage but he assured me it's not infected and her x-rays look good. She was able to stay off her oxygen for several hours this afternoon. Yay!! We'll keep her on it at night for now. Caroline can return to school on Monday as long as she feels up to going. She's says she's ready!

Unfailing Support

Caroline has the most incredible support system. Here are some pics of visits from friends during her hospitalization. Thanks for being there~always.

Summer in October

Who needs a heater when you have a concentrator? Sense sarcasm? Yep? Well, Caroline's oxygen concentrator was delivered today and I swear it's now 85 degrees in our house and sounds like Darth Vader in surround sound. They delievered 50 feet of tubing. Yes, 50 whole feet for Tate to lasso her with! On a lighter note, Caroline had another good day. She moved around a lot more and had an appetite. Her oxygen requirement is not much and for that we're truly grateful. Thank God for small favors. Life IS good. SP

Thank you Mrs. Wallace for helping Caroline with her homework. What a blessing you are!

Sunday 10-5

Caroline was discharged at 4:00 pm this afternoon. She came home on oxygen. Hopefully being home and resting in her own bed will help build her strength. I'm just trying to figure out why she's still on oxygen when she hasn't required it post-op this long following any other surgery. Does it have to do with the pneumonia she had 8 weeks ago or has this kyphoscoliosis taken it's toll? I'm happy she's home but still have a lot of questions to be answered. I'll call the Pulmonologist. She seems to feel good and isn't complaining of pain. She slept a lot longer than usual but I think maybe she's trying to do too much too fast??? Tomorrow's a new day.

Saturday

Caroline's off CPAP and they took her cath out today. They want her to stay one more day to make sure she does ok w/ just O2. We're hoping to wean her off that as well but that we just may have to do at home. Her spirits are good today. The only other thing she's hooked up to now is her IV. She's tolerating her G-tube boluses well.

Friday pm

Caroline had a good day today. She sat up on the side of her bed for the majority of the day. They took her off CPAP and put her regular trach back in and she tolerated it for about 30 minutes. Her HR and RR were too high( like running a marathon while lying down) so we put her back on the CPAP. We'll continue this through the night and if she does well off CPAP she'll be discharged tomorrow. WooHoo!

Thank you Mrs. McCoy, Parker, Alexander, Lily and Hope for visiting today. Caroline applied and reapplied her lipgloss! Your visit made her day!

"koko" (keep on keeping on) --hey PAMPA

Caroline's sitting up! She got up late this morning and feels much better. After a good scrubbin' and linen change, fresh jammies, she's already into her Go Fish and Hangman. She's weaning from the vent well and they're going to try CPAP this afternoon. Blood gas is due at 4:00. That'll give us a lot of info. Dr. Devito stopped by again this am and said he thought she looked really good. We'll sit tight today and heal, heal, heal. Thanks for checking in! SP

Sleep all Day-Party all night

Weaning's just not happening so far today. She's sore and sleepy. She was up a lot during the night last night. Her BP and body temperature were low so they backed off pain meds and pushed some saline. That's better today but she's sleeping it off. The Intensivist gave orders to wean and we're trying-slowly but surely. No Ortho rounds yet. SP

Surgery a Success

Good morning everyone! Caroline did great yesterday. Dr. Devito said he was pleased with the reseatment and expansion. He said he was able to expand two notches. The resident will let us know exactly how much a notch is. He thought 1/2 -1 cm per notch. He was able to use to of her previous incisions for this surgery and said they're small. She rested so well yesterday. She's vented on 35% O2 and we'll try and start to wean today. Dr. D told us she may be d/c'd today but that was before the vent requirement. Believe me, we're in no rush to leave this morning. IV pain meds work so quickly! Thanks for checking in! I'll post after I see how she does today! Take Care, SP

Early Bird Gets The Worm

Caroline's Dr. Devito's first patient tomorrow morning! 8:00 with a 6:00 arrival. We like being first case because she has the day to get comfortable and there are no major shift changes after surgery. She's healthy and mentally ready (or as ready as an 8 yr old can be) to go in. I'll update post-op. Thanks for keeping her in your prayers~please remember Dr. Devito, too! Thanks again, SP

Red Light Green Light

Surgery's back on. The new date is 10/1. I will tell Caroline after this weekend. SP

Surgery Canceled

Caroline's surgery was canceled this afternoon. They didn't receive the tool they need. We're looking at October now. SP

Fairing Well

Pre-op went well on Friday and Dr. H started Caroline on some preventative abx yest....good thing~we just returned from the Fair! Ugh, major germ exposure, but dang it was fun! That was her had to be poked on Friday treat. We like to do something as a family before surgery. The kids loved it. This was Tate's first Fair experience. He's a bit too short for a lot of the rides-thank God! They each won stuffed animals and Doug and I agree that it's less expensive to go to Disney for a day! LOL Blessings to you all! SP

Surgery Update

Caroline's pre-op with Anes. is this Friday. I spoke to the Ortho.'s office today and they may have to postpone because the tool Dr. Devito will use to expand Caroline's device was not shipped. I would say no problem if she didn't need this surgery so badly. Caroline even said that she couldn't wait to have it because it would help her breathe better. Sooo, if she's ready then we're ready, right?!!!

Oh my Sodium Bicarbonation!

Caroline enjoyed her first Science Club meeting on Monday. She learned about acid and alkaline and loved it! Right up her alley!

Move That Bus

Caroline rode the bus to school for the first time today!

Stormy and Tate-- Zoo Pals

The boys had a blast at the zoo! Rock climbing trumped the animals- they thought!

Homework Help

Sophie was helping Caroline with her homework yesterday. Thought these pictures were sweet. SP

Weekend with my cousins!

Finally, we got to spend the weekend with Bella, Leighton and Collier! It was a lot of fun for us all. Granna spent the night with us, too! We celebrated E & T's birthday when they got back from their Auburn game getaway. Leighton scored a goal at her first game. She did great. Bella's team won as well. Way to go girls!!

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

Caroline's sick

Caroline's trach culture was positive on Monday and has been on abx since. She's febrile and coughing again today. The Ped/Pulm rx'd steroids. Her o2 sats were low today( 80's). I'm keeping her pre-op for Friday and praying for nothing less than a miracle. Caroline desperately needs to have this VEPTR revision on Aug 4.
SP

MD appt's

Caroline's had a few MD appt.'s in the last couple of weeks. The GI has changed her feeding schedule in hopes of adding a few pounds. This will help with the skin breakdown over her rib device. She had two bottom teeth pulled and her new dentist , Dr Martin Krieger, is fabulous!The ENT said her ears look great. PE tubes in AND working...bonus! Her 8 year check up was yesterday. I still can't believe she's 8. All's well in that dept. and Trach Clinic is tomorrow- and pre-op next week!

Caroline got her ears pierced today! She was so brave and is so very proud of her new earrings!

Chattanooga, TN

We had a blast in " 'noog."

"Maybelle and Gert" Destin, FL

VBS

Caroline spent the week w/ Aunt T and her crew and went to VBS at Eagle's Landing. She came home with lots of crafts and an awesome J.O.Y. (Jesus-Others-You) bracelet and news songs! I'll post some pics soon~
SP

CaRoLiNe'S BirTHdaY SpLaSh!!

It was her "best birthday yet!"
Caroline had a blast at her 8th birthday party!
What a great group of kids. Thank you for
celebrating with us!

Kool Kidz Camp

Caroline enjoyed her first day at camp. They tie dyed t-shirts, played soccer and snacked on snowcones. She loved it! Thank you Kool Kidz!!

Hooray for Summer

Caroline enjoyed her last week of school! She had a fabulous time with her classmates at Mrs. Sproat's pool party and really enjoyed the 2nd grade portfolio picnic. We had a neighborhood pool party on the last day of school and went to see a Braves game yesterday. Both she and Tate had a blast at the game and topped of the night at Karen and Ralph's Memorial Day party. Today we spent the day at Granna's. The kids were glad to see their cousins. We'll be sure to post birthday pics...6 days and counting!!!!!!

Mother's Day hello

Hello everyone! It's been a while since we posted. Caroline's been a busy girl. She's still recovering nicely. Her Pediatrician checked her incision last week-looks good. Caroline's ready to swim!! I'm going to post some pics of her latest out-n-about's. She was extremely proud to receive a reward at her Girl Scout meeting for selling the most amount of cookies in her troop. Still waiting on the shower radio! Thank you Ms. Laura and Ms. Daniele for a great year!

I had a wonderful Mother's Day today. I'm the luckiest mom in the world!

Congratulations Stanley family on the birth of your baby boy, Harper! We love you!

Take care!
SP

Home Sweet Home

Caroline was discharged yesterday! It was a whirlwind being moved out of the PICU & onto the floor-then to x-ray, CT then d/c'd the next day! It's so good to be home. She did great on the flight and slept until 11:00 this am. She's only asked for Tylenol a couple of times and feels really good. Dr. Campbell said she could return to school next week. We'll start off with half days.

Thank you all again for your well wishes and prayers. We are so grateful for our support system. Couldn't do all this without you~

Hope you all enjoy your weekend. Take care. SP
P.S. CHRISTUS will forward Caroline's mail to our home address. Thanks!

Parting the Resident Sea

Caroline got her JP out this am and has floor privileges. She couldn't get on her scooter fast enough and busted through report. You go girl!

In PICU but have a rm lined up--just in time to get d/c x-rays and paperwork. Maybe home tomorow! SP

Chest Tube Is Out!!

WooHoo! They pulled Caroline's chest tube out today and she did great! The JP will come out tomm. Still waiting on a room. I'm thinking we'll be d/c'd from here afterall! This is Caroline's Respiratory Therapist, Casey. He takes good care of her and always makes her smile! SP

Monday Update

Caroline had a good day today. Still in the PICU~6th floor's full. She's tolerating formula via G-tube (10cc/hr) with minimal pain. Labs still suggest some bacteria somewhere in her tummy. She refused all pain meds today and is moving slowly, but is moving. She's sitting up w/ help and rolling side to side easier. Still no problems in the Resp. dept. Her chest and JP have really slowed down. They plan on removing the chest tube tomm. and leaving the JP to pick up the slack. She said today that she wants to go home and she misses school. We played cards, Connect Four, and did some word searches. I'll update again tomm. Thanks for checking in! Take care~SP



Thank you Sandy for the airline tickets! We don't know what we'd do without you!!

Sunday Evening Update

Caroline's home trach is in and capped w/o O2. We'll have to upsize when we get home as she had a large leak around her usual 4.0 trach. Caroline's breathing easy capped. She was satting at 92% before surgery and is up to 97-98% post surgery. That's awesome! I think she'll breathe even easier in the next week. She's really sore. They're going to pull her JP tube tomorrow. Her chest tube is still draining quite a bit and she'll have it atleast a few more days. Lungs are crystal clear! No fever!! Blood pressure is back up!

Her tummy trouble is improving. Still passing some blood in her stool. Surgery came by for a consult and thought it may have been from the enema. Still no g-tube or po feeds. They started TPN tonight in her central line. If she can tolerate half strength feeds tomm. then we'll go to the 6th floor. She did get out of bed and into her wheelchair-so glad we brought it- and payed Uno and Connect Four. She's back in bed watching her Tom and Jerry DVD. Her voice is still really raspy but managed to chat with her buddies, Sydney and Sophie tonight. They made her night I'm sure. Thanks for calling girls and she's looking forward to watching the mermaid movie when she gets back.

Mrs. Sproat's class sent Caroline the sweetest card today. It really brightened her day. Thank you everybody! She smiled the entire time she read it. SP

If you would like to mail Caroline the address is:
Caroline C. Pierce/ Titanium Rib pt.
c/o CHRISTUS Santa Rosa Children's Hospital
333 N. Santa Rosa St.
San Antonio, TX 78207

Saturday Update III

Caroline hasn't felt so great this afternoon. Still c/o tummy ache. Had to get an enema and catherized to r/o a UTI. Passing some blood. Abd. x-ray just showed a lot of gas-not a lot of stool-still no feedings. Her WBC is elevated today. From a respiratory standpoint she's doing good. Still off O2. We think she'll feel much better once this tummy trouble subsides. SP

Saturday Update II

Caroline's back in her old trach and off O2!! Abdominal x-ray was ok, just a lot of gas. She's resting well. We'll update tomm. SP

Another good report

Caroline continues to do well. She's now on CPAP and her chest tube is to water seal. Pain ball is out and morphine stopped. Afebrile and tolerating feeds. They want to keep her in the PICU through today as her chest xray was questionable-maybe positional? Heart rate is a little elevated but pain meds were decreased. She just had a good bath and a linen change and is resting well.

Tate's having a ball at Granna's. He got a new baseball bat yesterday and two time-out's! We do miss him terribly!

Thanks for checking in and have a great day! SP

Caroline's first day post-op was good and uneventful. She's resting comfortably and tolerating some g-tube feeds. They think by tomorrow she'll be ready to start weaning off the vent and will have the ENT as back up due to her tricky airway. She's already asking when she'll be able to ride her scooter! Can't believe it~SP

Surgery was a success!

Caroline's surgery went extremely well today. A rod was placed on her (R) side and her ribcage expanded. Her lung volume improved immediately. Pretty cool that they can watch as the lung fills the space that had been crowded. She's in the PICU vented and in quite a bit of pain. They're working hard to keep her comfortable. She's talking to us a little, mostly crying that the vent hurts, but knows we're here. She's so brave and we are so very proud of her. Thank you all for your well wishes and prayers. ~SP

It's a "Go!"

Pre-op started at 8:oo this am. It was a long day but I did great. I have to be at the hosp. at 6:30 tomm. am! EARLY!! I am Dr. Campbell's first pt. and hope to be out of sugery by lunchtime. We stayed in and ordered pizza tonight and played Uno. I beat my dad! That's all for now. Love, Caroline

We're here! It's sunny and beautiful~about 89 degrees and no pollen! Caroline got a window seat on the flight-bonus! The city is alive and there's lots of Final Four everything everywhere (RJ, a lot of KS fans...we're thinking of you!!) and tonight should be fun just people watching at the Marcado. We'll write after pre-op tomorrow! Take care~ SP

Get ready, set....Caroline had her pre-op w/ her Ped. today and looks good. Her u/a (which is now required by TX) was normal. She'll start a prophylactic antibiotic on Thursday and that will hopefully keep her covered until surgery! We leave on 4/7, hosp. pre-op 4/8 and surgery Wed.'s 4/9!