Thursday February 18, 2009

Another HUGE day for Chrsity!!!  When I got to the hospital this morning, Christy was pretty tired because she had a rough night.  Christy and Don both didn't hardly get any sleep at all. Christy was very uncomfortable every time they flushed her feeding tube, but we don't know why. I was trying to think of reasons... maybe the water was too cold, maybe the flush was too fast, maybe she was in a bad position, ??  Christy had been flushed with the same temperature water (room temp) ever since she got the PEG tube, and it has never been a problem.  We've been flushing her PEG at the same speed more or less and it hasn't been a problem.  Weird.  So, Christy had her meds and it was time to get into the chair.  This was the very first time that she sat in the regular chair and not the cardiac Chair.  Aunty Mary and Malia were visiting Christy and I shot this picture of them.  Donald carried her from the bed into the Chair, and Christy held on to Don around his neck during the transfer. There is a big elastic, white band around Christy's abdomen to keep her safely in the chair.  Christy has her trach capped (red cap) in this picture. Christy is also receiving her feeding (the skinny tube with tan-cream color fluid in it going across Donald).  When her feeding was finished, it was time to flush her PEG tube.  Sure enough, Christy had a fit like it was hurting her.  I went slow, but it didn't seem to make a difference.  Christy was kind of crouched up and bending forward, so I asked her to sit back so she could straiten her body.  She did.  And the grimace went away on her face.  We asked if she felt better and she nodded yes.  I pulled back on the big syringe used to flush her tube ( no needle) to see if something was going on inside her tummy, but it was just tube feeding. good.  I tested if fluid would flow in by gravity, and it did.  So everything looked OK!  I think it may have been the position she was in that made it hurt.  So that turned out to be just position??... but we'll keep an eye on it. 

So after all of that, Dr. Yamamoto from the rehab hospital had come in to see Christy. He talked to Christy and examined her.  Christy was very sleepy and not alert.  All day Chrsty has been escaping into sleep and looked exhausted ( We all would after skipping a night of sleep).  Christy did kick up the right foot for him (which she's a pro at) and she opened her eyes.  He said she is making progress, but didn't feel that she was quite responsive enough to rehab at the Rehab Hospital of the Pacific!! Yay! Send us to Craig.  Donald asked if there were any exercises

 we could do with Christy to help the left leg lengthen  and loosen.  The coordinator who was with Dr. Yamamoto instructed us on the correct massage technique.  We were trying to rub and kneed, when Christy really needed long strokes down her hamstring with the knuckles of the hand (kinda like this picture, except Christy wouldn't be on her stomach, she would be sitting in bed).  Therap

ist Donald has been working with her quite a bit, and Christy was using that left leg in different ways tonight!  She was

 moving the knee and leg in angles she hasn't moved it before! cool!  There was another Doctor from the Rehab Hospital that came to evaluate Christy a few days ago. She had said that she didn't think that Christy could tolerate the three hour rehab they do, and wrote a letter to HMSA explaining this.  Dr. Yamamoto said that he would write a letter as well to HMSA recommending Christy to go to Craig Hospital.  We all agreed that Christy needs the most appropriate treatment/rehab and Craig was the best place for her. We are envisioning CRAIG hospital in our future!

Christy has been sitting up in the chair for about and hour and a half now.  The original reason for getting up into the chair was Christy was being seen for a speech therapy consult at 11:00. Kim came about noon.  Speech Therapist work on assessing two main things.  They look at things like comprehension, language and communication.  They do help people with there speech (articulation, intonation, rate) and non-verbal facial expressions and gesture.  The other thing they do is asses swallowing ability.  They will come in and feel the neck in the area with the Adam's apple and ask patients to swallow.  They assess how much oxygen the patient is on, and if they are at risk for aspiration.  If you are on too much oxygen, they will not feed you. Aspiration means the food or liquid goes "down the wrong pipe". The "wrong pipe" leads to your lungs and having food or juice in your lungs can cause aspiration pneumonia.  Water has a normal PH balance, which, in theory, shouldn't cause infection in the lung, so they always start with ice chips.  They melt slowly and you only have to swallow a little at a time.  Here is where oral care and hygiene come into play.  If you don't have a clean mouth, and the water you drink has the bacteria in it, and you choke and aspirate, and the bacteria water ends up in your lungs,  you can still get pneumonia.  Sorry, I got a little off track.  Today was the very first time that Kim was seeing Christy, so it was mostly an assessment. Christy was so tired, we tried hard to wake her up, but it was only minimally successful.  The therapist was gathering information about Christy by just observing.  Christy was moving her feet to use her toes to keep her upright and balanced- good!  Chrsity opened her eyes for Kim and nodded once or twice, opened her mouth and coughed and yawned, but did not speak.  Christy was so tired, i think it was too hard for her to concentrate.  It sounded like Kim was going to come frequently, we're hoping for daily! Thanks Kim!

Christy has been so alert and responsive.  She almost always shakes her head yes or no when asked questions, as long as she's not too tired.  It's so amazing how far she has pushed herself with the help of Don.

Ok, I'll stop stalling on telling you the most exciting news of the day!! CHRISTY'S TRACH IS

 OUT!  She no longer has a trach in!  Christy did well on her 24 hour trial and they pulled the trach completely out!!  One of the resident doctors came up- he's part of the trauma team, i

 think.  He did it while Christy was sleeping, and she hardly felt it.  He simply untied the trach ties from the "

flange", then deflated the "trach cuff" and told Donald, "Are you ready for NBD?" And he pulled it out!  He laughed and told Donald- No Big Deal, right!  And that was it, the trach is out and GONE!  Chrsity looks so comfortable.  Slowly every tube is coming out of her.  She just has two left.  One for feeding 

and one for She- She.  Christy just looks like she's sleeping now.  They have a gauze over the stoma (hole in the neck)!  So sleeping beauty sleeps, and we'll have another beautiful day tomorrow with her.    I have to quit because the blogger is erasing all of my pictures one by one.  I guess I had too  many on here!!