Tuesday, March 4, 2008- Arrive at Craig

Today's blog comes to you from the Patient & Family Education Room at Craig Hospital Denver, Colorado. Luckily they have free Internet access on a computer for the patients & family- YAY! This place is UNREAL, but before I get to that, I'll catch you up on our journey over from Queen's 957 through the RED EYE ride over here on United.

As usual Christy was drawing a crowd on her big day to transfer to Craig. Christy was awake and talkative for all the loving family and friends who wanted to see her off. Christy asked Lorene to sing the song to her that Lorene sang at the benefit. There wasn't a dry eye in the room when Christy sang the end words with her.

The kids were enjoying being in bed with mom and cuddling up. Donald, Lorene and I were busily getting things ready with the nurses to get her medications, put on her clothes and make sure she had plenty of time to love and kiss her Kiddies!

Christy had some pureed food for dinner, which she loved-- NOT. She said "what is that?" when she saw the food coming to her off the food tray pictured here. She was thinking, "Why do I have to eat that weird mushed up stuff, where is the real food?" We tried to explain that this food was easier to swallow, but she said it was "junk!" and She was cracking us up but no one could admit that pureed food seemed appetizing!

We were picked up by this transport team from the room (one of the guys is in white). The family and friends gathered to say goodbye near the elevators, and said a prayer. Hugs and kisses for Christy the whole time to wish her well on our departure. The transporter said, "wow! you can really feel the love in this family! I want to be a part of this family, too!" He was right! We all held hands tight, Kainalu said the first prayer, than Dylan, than Lorene. We all said "Amen" and we were off. The two transporters escorted us all the way to the seat on the plane.

When we arrived at united curbside to check in we were greeted by Kanani. The untied representative was already waiting for us and checked us in "priority status". Betty from United got passes for Mom, Lorene, Bev & Courtney, BJ, Kanani & gang to come to the gate with us! TSA shuffled us through with no wait! Thank you to everyone who made this a smooth ride to the gate & onto the plane!! It was effortless! Christy was asleep for the ride over and thorough the airport.

Once we got on the plane, we were surprised to see that first class was just a glorified coach seat. :( We were expecting leg rests, more room and a chair that reclined well. Christy had a restless night. We tried to give her the sleeping pill but it didn't work well. We used the suitcase as a foot rest (good thinking Donald!) and that made her a little more comfortable. This picture shows Christy's chair in a full recline. By the way, I loved it that Don had his iheartchristy shirt on, it was perfect! Christy needed some Motrin for pain in her legs and her butt was sore. We tried to give her the sleeping pill, but it didn't work well. I kept her hydrated with PEG tube water flushes and IV fluids (shown in the picture). We dumped her Foley bag only twice. Once she "woke up" this morning, she could tell us clearly what she needed and was back ready to rock! We didn't sleep but we got to snow capped Denver (see the window pic from the plane below) safe and sound! Thank God!

When we landed I decided to chew a piece of gum to avoid subjecting anyone from my morning breath. I offered Don a piece of gum, too. We were both eating gum, and Christy asked for a piece too. Don and I looked at each other not knowing if we should give her a piece or not. We rationalized it by thinking it would be chew therapy. Don told Christy that she better not swallow the gum, and Christy laughed at him because it was as if he was telling a child how to chew gum. We were all laughing. Donald checked Christy's mouth a few times to see how she was doing. it was hard for Chris to get it softer, so she kept chewing. She complained that it was "hot", but mentioned nothing about it afterward. So we are waiting for the car (after baggage claim & everything else) and I ask Christy where is her gum? She says "I don't know?" We all laugh. Don said "You swallowed it, you sucka!!" And Christy innocently says "No, I didn't!" They went back and forth and Christy said she spit it out, but we were with her the entire time--no gum in sight! The gum mystery remains.... ha! So much for chew therapy, huh?

Our flight arrived 45 minutes early, so we let everyone deplane & was waiting for our transport. A flight attendant & Don carried Christy from her seat to the regular wheelchair & the unitedwheelchair guy (don't know the Politically correct term?) waited with us till transport came. His wheelchair was slim and had a tall back. We padded Christy's butt with a pillow and we were off to baggage claim. Meanwhile Alan was keeping in touch with us from the cel phone lot to make sure we could take all our luggage, Don and I on the transport bus. On the way over, no luggage and 1 person was allowed. This picture is us on the airport train going to baggage claim- fancy, huh? Christy has her snugly bear on her lap and her "Dylan" pink blanket.

Christy's wheelchair loaded on the back of the van by a mini-elevator. She rolled into the right spot and got strapped into the back of the van with cables connected to the ground & a seat belt. This picture on the left is taken from the back seat looking into the tail end of the van. Christy is riding in her wheelchair talking and asking questions. She did marvelous on such a long flight where she had to sit for so long! It was about a forty-five minute ride to Craig hospital. The weather today was warm-- 70's maybe? There was a cool breeze, but we didn't need our coats! Alan and his boyfriend Luis met us at Craig. It was so cute to see christy's face light up when she heard Alan's voice! We all spent the day together and met all the staff. They were so very attentive and informative. It was wonderful to see so many people so interested in seeing Christy and doing quick evaluations and talking about types of wheelchairs with and without headrest, upright, back support, with all kinds of names. They took about 10 minutes debating amongst themselves which would be the ideal wheel chair for Christy.

Alan went with Christy to her dopler test today while I took a nap and Donald had a meeting with the Social worker and others. Dr. Ripley, Christy's Attending Pysician came to see her this evening. He spent a long time explaining to us what was going to go on while Chris was here. The dopler studies are to check if there are any existing blood clots in her legs. I'm not sure if they looked for clots anywhere else. Dr. Ripley is firm about no one getting out of bed before his patients are cleared of potentially dangerous blood clots. Chrisy's test are CLEAR! yay! passed step one!

Chris was awake, alert, talking a lot and making jokes! With Donald and Alan in the room it's no holds bar. They are ripping each other every other sentence and Christy was getting into it too. Family love :) When Dr. Ripley came in to see Christy for a second time tonight, Alan and Luis had just gone. Christy can't see well and Dr. Ripley was saying hello and asking if Chris knew who he was. Christy said "Ahllaun chedch" and we asked a few times what she said, and by now the "bitch" was almost unmistakable, and we're all a little silently uncomfortable for a second, and Donald is saying to Christy. Ahh...., Alan and his boyfriend are gone, are you saying "Alan's bitch?" Ha! Christy said "ya." It's Dr. Ripley... and we all loudly laughed "throw your hands up" embarrassed!! yikes! Hilarious first day! The best part is that Dr. Ripley took it and ran with it, and asked "do I look like Alan's bitch?" ha ha And he kept referring to himself as that through the conversation... making us laugh. Luis is also going to be another great resource for us. He is studying (almost done) Neuro science, traumatic brain injury, and with Occupational therapy components... smart guy (hope i got the major right)! We were happy to meet him!

Christy got her first real bath with soap and water. That felt so good for her after 8 weeks of bed baths! There are techs here who do a lot for the patients. This is Makai, Christy's night tech. Patients here get a shower in the evening, every other day. We slid Christy onto this plastic contraption with a whole at the bottom for a drain & wheeled her to the shower. It's a waterproof gurney with a drain at the bottom! Cool huh? This is why they take care of you at Craig as a whole person. Real showers and you wear your own clothes. They do have gowns as well, but they keep you as your own person. They are going to help Christy with all her activities of daily living. Dressing, brushing her teeth, bathing, etc!

What an awesome first day! We are so so so excited to be here at Craig. The whole place is just so positive! I almost cried on our tour of the floor. Seeing all the therapy going on and every person is so nice here. It's exactly what Chrsity is craving right now! People really take the time to teach and explain to us what is going on! We're so excited to be here. Christy needs to have many test done tomorrow. Almost all of these test she's already had before. The difference is the quality of the scans. EEG will be repeated. They may wean her from her seizure medication to allow her maximum alertness during therapy. Sometimes these drugs can be sedating. Until tomorrow!! xo, gabby

PART II
Christy was having a little trouble getting to sleep tonight again. She may be having something similar to "sun-downer's syndrome" that elderly people have. When the sun goes down, they get restless and confused. Tonight the nurse gave her a new med to try to relax her and try to get her on a regulated normal sleep cycle. The nurse just came and told me that Christy is sound asleep now! The computer is at the doorway around the corner from Christy's room.

Since I've been typing, the nurses came to get me again. Christy is restless, and she is having spasm-like motions with her arms and legs. Christy has had episodes of this before. She just didn't get as much attention with it and no one knew what to do about it. There were four nurses around her bed watching and helping to get her comfortable and keep her from hurting herself on the bed rail. Christy went back down to sleep again. It's comforting to know that Chrsity is being monitored closely and by a camera at the nurses station. the kind of care and concern we're already experiencing is amazing! Ok, sleep time for me, too!