Alex's Halloween Bonanza 2011 -Pitt Memorial Hospital



Fishing for Prizes -Pitt Memorial Hospital Halloween Bonanza





Wheel of Prizes -Pitt Memorial Hospital Halloween Bonanza





Alex had to say, Rapunzel Rapunzel, let down your hair -Hospital Halloween Bonanza 2011



Monday 31 OCT 2011 --Halloween

Our whole family spent all weekend with Alex, then dad spent the night w/Alex and returned to work this morning. Alex has had a great day so far, but very busy. She engaged OT, PT, RT, SP and went to school for an hour. After her busy day, she went to the hospital cafe (huge) in which half was entirely filled with booths. Booths were created by various hospital departments each with different themes such as Rapunzel, fire men, Charlie Brown, etc. Each booth gave out treats such as journals, pencils, socks, toys, games, glow sticks, etc. Alex went from place to place saying trick or treat. She ended up with a pillow case full of stuff. We came back to Peds dining, played cards, had ice cream and wow, Alex is in her Posey listening to Fur Elise, chillin w/her cell phone and a heating pad for shoulder pain. She will probably nap soon.
About her recovery. Today was the 2nd team meeting to discuss her progress, which far exceed expectations in most categories. Happy visitors are welcome anytime after 3pm and on weekends. You could come eat dinner with her in the cafe or watch a movie. Let me know so its not too crowded. You can also help by encouraging focus of her gaze toward the right and encourage right handed activities. Her long term memory of friends, family, activities is fairly sharp. Short term memory is increasing but still needs work. Also orientation, math and writing skills. Her typing has improved about 80% over the course of a couple days...which is a good representation of her fairly consistent progress. Her inhibitions are still similar to a few too many margaritas, but more restrained and clear every day. She has been fairly emotional, which is okay if the emotions are positive, not so much the other way. She still needs assistance to walk and shower, but is progressing very well. PS Thanks for all your prayers, keep them coming toward full recovery.

Saturday Night --

Whah, I feel so abandoned!! No, seriously, someone call Ern. Ernie said he had "things to do, things to do." He spent the night with Alex and left back to Havelock this morning...have'nt heard from him since. Why I am saying this? Well, we checked out of Ronald McDonald house this morning after meeting a 30 day max. I packed everything and Jasmine cleaned. From this morning to now, its been me, Jasmine, Nic and Alex in Peds Rehab rm 446. We zoomed all over the hospital with Alex in her wheely chair, we watched movies, Jackie paid a welcome visit, Jasmine and I gave Alex a full shower, washed and braided her hair, brushed her teeth, cleaned her healing wounds, made bathroom trips, fed her meals, catered to her emotional highs & lows, and now Im too exhausted to breath. Of course Ern works hard and has stuff to do, but I was joking with the kids about how "daddy left me alone with three kids in freakin rehab" LOL, they are not literally all kids. Jasmine is 24, Alex 18 and Nic 14...but they still act like kids sometimes, especially hanging out together and making Alex laugh. Now Im trying to figure out how four of us will sleep in here and hope they dont start kicking us out...anyway...
Alex is eating well, is increasing her focus and retention and of course is now able to take calls. Her memory comes back in spurts mixed with some variables, for example, she told a family member the other day, that she had a cat scan the next day, which was wholly innacurate. She can however be suprisingly lucid. Her obsession with picking at things is driving me mad, only cause I want her to be safe and heal. She keeps trying to pull off her bandages that protect her trach wound that is still healing, no, no, thats not right, she actually does pull it off, again and again, grrr. She doesnt understand we are trying ti minimize infection risk. The nurse just gave her sone meds for right shoulder pain, she should hit lala land in 5, 4, 3, 2, ....

Thursday Morning 0330

Well at least she slept for 3.5 hrs straight. Alex then woke up, bathroom break, request for juice, request for more juice, request for crackers. Are they sour cream and chive? No Alex, sorry. She eats a few tiny crumbles, whispers several versions of little ms muffet sitting on her tuffet, then request to remove a small square purple halloween pillow laying on her canopy-she insist it is a cat staring at her. I remove the "pillow cat." She finishes her juice, we fix her trach bandages which she tries to pull off, she finally yawns, curls up in my sponge bob blanket and zzzz. Its 0500 and now ill try to go back to sleep for a few more, seconds, minutes or hours...it all depends :-)

Friday 27 Oct 2011 wee hours.

its just after midnight. Alex had her bathroom run, a fresh tshirt, sip of water, hair pulled Up, skin moisturized, fan on, and teeth cleaned. She is now adrift in sleep land. Ern and I are both w/her tnighr. Pray she sleeps at least 4-6 hr so she is not so foggy for therapy.
Shout Out to Caleb t-night! He came for a movie night and upon his arrival, I saw the bright self created Alex smile! She must hsve been so happy to have his handsome and more age appropriate company this evening. Caleb also said he had her laughing! Laughter heals so again, shout out to Caleb!! You rock for giving Alex the perfect closure to a busy day.

Wednesday 26 OCT 2011 -Rehab Update

Supported by her therapist, Alexandria walks the halls of Pitt’s Pediatric Rehab Center nearly daily. She started only able to manage 8 steps and went to 80 the next day. She continues to need support on both sides to balance her and ease the impact of weight bearing, as her legs were pretty weak after her 3+ weeks of quasi sleep. She can sit up with help but gets irritated

One less trach today!

No more trach!!

Monday -Swallow Test

Wow its been busy. Just a fast update. Alex passed the swallow test, no more feeding tube!!!

Friday Night --Alex's busy day

Up at 0730, occupational therapy included brushing teeth, dressing, sitting up in bed, manipulating and identifying colors. Speech therapy, Physical therapy, break, more physical. I pushed her around the Peds hall in her wheelchair, she seemed to like it. Her intelligence revealed itself in many subtle moments, Im so proud of her!! She also tried to talk, in little whispers! Amazing!! God I LOVE this girl!!

Friday 10:15

Alex was assisted with washing, dressing, identifying and later speech. Questions using YES/NO buttons: Is your name Alex? YES; Are you 14? NO; Are you 18? YES.
She has been busy since 0740 and now is on a break watching Toy Story 3 :-)

Friday --0230

Y a ww n -- Trying to work on a more appropriate sleep wake cycle. Alex does need sleep, but she fights it and it only last for short burst. Her last was 12-230 and now she is wide awake and fidgeting trying to pull her trach cover, etc. They are going to try a mild sleeping med, after all, she has work at 0730. zzz

Posting -

Those who do not wish to sign up for a profile can still post using your real name. All you do is write in the comment box and then underneath there is a COMMENT AS white box that says "select profile" and has a little arrow. Click the arrow and down on the bottom of the list of profile choices, you have two other choices. You can choose name/url or anonymous. Choose name/url. You will get a pop-up that ask for your name or URL. Simply enter your name and then post the comment. This will help us to better know who is posting...if you dont mind :-)

Thursday Evening -Rehab and New Beginnings

Alexandria is now officially in Rehab at Pitt "Regional Rehabilitation Center." www.uheast.com/rehab . She was delivered safely here by one of our favorite ICU nurses, Ashley.    Her Rehab Doctor in charge

Thursday 20Oct2011 -Rehab confirmed

Egads! the pace is finally picking up. Your prayers are STRONG MEDICINE!! She is moving in about an hour downstairs to Rehab RM 445B. She is having a wash, getting ready! More soon

Happy Birthday Ryan Garcia!!

You and Alex are two days apart and are like two peas in a pod, both stubborn comical Garcia's like your Grandpa :-) You know she loves you, as do we all!!

Wednesday 19 Oct

Ernie drove Grandma Janie to airport, shes probably on her way to Texas as I type. It was hard when my mom went home, now with Janie gone, its just Ern & I, taking care of Nic in Havelock, Alex in Greenville and life obligations, with a few good friends helping us along. Thanks J9 for saving us with Nic support. Thanks to Alex's friends who come and help as much as they can.

Alex was awake all morning, she gets her adorable frustrated eyebrows going and watch out! She was looking at "Fresh Prince of BelAir" on tv, pulling stickers off her knee (mean mom) and wiggly-- Still in her dreamy sorta state but more active all the time. She is taking a nap now so I am headed down to Rehab for an update on her room status. I have my follow-up kidney procedure in a little while...yikes. Send good thoughts

Tuesday Night-- Three weeks post (slight rehab delay)

Its been 3 weeks today. There is soo much to be grateful for this week! I will start with the little woman of the hour:

Alexandria the Great is more awake every day, moving around in her bed, pulling her blankets up, opening those pretty green eyes longer and with more focus, scratching, yawning, handing a ball to her dad earlier on command and today with a rehab visit, she was set up in bed, asked to point out certain aspects on picture cards, and clearly motioned correctly. Although there is work ahead, this girls stamina is amazing!! Like her Dean told her at an earlier visit. "God is NOT through with you yet" [moving to Rehab had slight delay, they are waiting to find her a room, maybe tomorrow. Her night nurse is Emily and Ernest is spending the night with her...I think I'm supposed to sleep -weird] Stand and cheer, your prayers are strong! Keep that vibe humming the healing tune.

Grandmothers: What can be said other than they are priceless. Coming here on a moments notice and aiding in troubled moments. Our last one, Grandma Janie flies back to TX tomorrow. Im surprised she is not using her own angel wings --seriously... Im in awe of her patience and ability to help both Ern and I individually deal with our own types of pain while at the same time, helping with Alex and dealing with her own sadness -- Thank you soo much, I miss you already.

Jasmine & Matt: tenacious and loyal! driving three hours every weekend from UNCW while amidst heavy courseloads and all night study to ensure time for little sister, letting her know someone is always with her.

Thanks to all Friends, Family, Neighbors, ICU staff College Instructors, Ronald McDonald House, and so many others.

Everyone, Keep praying keep praying as we are on the edge of moving into the task of Rehab phase.

Tuesday --Moving to Rehab today!

More updates later this afternoon!

Monday 17 October 2011

Alex's status remains stable, waking up a bit more every day with responses like ocean tides. Lucid and then sleepy, lucid and then sleepy.  She moves her arms and legs all over the bed and kicks pillows off. She moves her left arm most often and uses it for

Happy Birthday Alex!

Happy Birthday to you
Happy Birthday to You
Hhhaaapppy BirthDaaay Deeaarr AALllleeex
Happy Birthday tooooo YOUU!!

I love you!!  -Mom

Sunday 16 Afternoon

Alex is managing to interact despite her discomfort. Her trach is a huge issue for her as her throat was irritating her before the accident. Combine that with nearly three weeks in bed and she is like a frail little bird. Her stats have been great and we feel she tries to stay more awake every day, tries to put forth effort to interact, and yet seems so sad and scared sometimes...and naturally frustrated. The sooner she moves into progressive stimulation and out of ICU, the better.
Matt & I stayed w/her all night. Jasmine watched parts of Toy Story with her, trying to encourage increased focus, she also chats with and reads to her. We read to her and massage her legs, do her nails and hair, etc. Grandma Janie helps with range of motion and cleaning/turns. Grandma has the Dallas game on and reminded Alex of the photo she captured of Tony Romo earlier this past summer in San Antonio. Her best friend, Jackie is here and gives Alex that (youthful, happy, girl-talk PEP) conversation that she so needs. Jackie is like Vitamin C for Alex :-) Caleb, her very special friend, brings her ongoing support and provides a boost of hope just when we need it. All of them, Thaier, Sweety, Jill, and others together with the love of her family, near and far, are all a parts of that golden positive energy feeding her back into prime health. Its a commercial so Grandma is tickling her...bet Alex cant wait for the game to start again ;-)

Saturday Afternoon/evening

Ernie is spending quality time with Alex. I grabbed some food and after a rest will head back. She opened her eyes many times today. A rehab nurse came by to explain their program. Alex will be tested Monday to see if she qualifies. If so, it is down on the first floor and she can finally get away from the blips & beeps of ICU and into some stimulating activity to start walking that road back. This is our top priority this weekend, help her meet those goals...send out your love thoughts!

Saturday 0244 wee early morning

Working on some homework up here with Alex. Its cool & quiet in her little ICU cubbie. The nurse and careworker just moved her and cleaned her up. Alex has been overall stable with vitals, trach doing fairly well. Her interaction is still a bit sluggish, but she did

Friday 1323 Update & Mail

Alex had phys.ther. for about 20 minutes, they sat her up in bed to ensure her ongoing range of motion. She opened her eyes but responses remain sluggish. Docs are changing up a few meds, thinking this might help her better wake up. The odd thing is, her hrt rte stays high (112-140) like she is working out...so this is being addressed today as well by better evaluation of her pain meds. All vitals as a whole are good.
Ernie is trying to stay in Havelock w/Nic as much as possible. I am here except for school on Mon. & Wed. in New Bern.
Yes, her birthday is 10/17. Some have asked about mail. Mail can go to either our home address or here at:

Ronald Mcdonald House
Garcia rm. 224
529 Moye Blvd
Greenville NC 27834

Friday the 14th (day 18)

Atavan seemed to help, stats normalized, no more wrinkled eyebrows. Shift
change and Pete is again her
day nurse. I just left to catch a few winks at the rm across the street, take grandma
to breakfast, then head Ill head back.

Friday the 14th 0526

Its 5:28 am, Alex had been resting all night, then her heart rate jumped to the 140's, BP 127/88, her eyenrows wrinkled up. Seems she is in some pain. Drew gave her some Atavan to ease her. Dr Lam is here assessing her, but he does this standard every morn. No huge changes otherwise.

Friday --just aft midnight.

Although I just posted, I thought Id post one more, for those more detail orienred: A caregiver just cleaned her teeth and suctioned her mouth. Hrt Rt 126, OX 94, BP 137/96. Temp @ 97.1. Her earlier Labs were great. Drew is checking her trach and turning her now, repositioning her. This is to prevent bed sores. They are very careful about this. As they move her they tell her what they are doing. She is resting again

A special thought about another amazing girl

For some much needed inspiration, please take a look at another beautiful young lady who overcame. Her diagnoses was similar to Alex's. Her accident was 03DEC2010. She has since then graduated from high school, what an amazing story! Her family is awesome and has been sending words of hope through some of the darkest feelings Ive ever confronted. Cheers to Chloe and Ellen!! http://chloebrunke.wordpress.com

Thursday 11pm

Her bronchoscopy earlier tday went well. Alex has been sleeping much of the afternoon and evening. Catching up on rest. Her night nurse is Drew. Amazing what a good night nurse can do...Ill tell you. When an emotionally strained parent feels comfort and confidence in someone, said emotional parent just might be able to catch some zzz's. Thanks for the 4hr nap Drew. Being back up here does feel better. Maybe I can use this quiet time to catch on some class work before my instructors give up on me. TTYL

Thursday day 16 - Bronchoscopy

Bronchoscopy, today at 1300. This will be done to asses any damage to her windpipe and fix her Trach, which was not looking so good. Although I understand why the need, I am speechless with frustration and can nearly feel every poke and cut she endures. She was already thin, tall, over 5'7" and thin, lanky. So to see this sweet little girl even thinner...well lets just say Im trying not to fall to pieces. I know kids are resilient, stronger than given credit. She is like that, she is certainly way stronger than me right now. Pray for a smooth, easy procedure today. Thank you.

Wednesday ICU (Day 15)

Alex slept well but her trach area is seeping blood. Her hrt rate tends to run high, up & down. I think it is discomfort. Another procedure may be ordered for the trach...this is their top issue. Mine is fighting to get her away from the pain, the bright lights and lab needles at 2am while they poke her several places trying to draw blood. Mine is whispering words of comfort while trying to hug her across a medi bed. I brought her favorite purse, jeans, etc to her yesterday and whispered that they were here hanging behind her, ready for her to get up and get dressed. Her responses are mild in the last 2 days, but considering her hard work, she probably just wants to be left alone for awhile. Her day nurse is Pete, her night nurse was Drew. Keep praying and visualizing her up, hanging out, being happy and send those thoughts to her ...again and again

Will be working to post past missing days, check back for updates

Evening Shift-

Nurse shift change. Nurse Nan is on again, being diligent...

Better and better

ALEX
In just two weeks, Our amazing Alexandria has indicated awarness of us, of her friends, of others. She has given thumbs up, opened her left eye and