Wednesday, February 26, 2014

Lots of News

A lot has been going on (which helps explain why I've been too busy to do a blog post!).  I don't really even know where to start.  Normally I like to go chronologically, but my memory is fading as time passes so here are the highlights (in no particular order):

***We're moving.  Sometime next week Eli will be discharged from Peyton Manning Children's Hospital and admitted to St. Mary's Medical Center (SMMC) in Evansville.  He will be an inpatient in their rehab program which we expect to last about two weeks.  While we are very excited and grateful to continue his therapy on an inpatient basis so we don't use up our limited outpatient resources, we are sad to leave PMCH.  The people here have worked so hard to make us comfortable and I don't think I could be so spoiled at any other hospital!  We know this is the best step for Eli and we aren't doubting the decision at all.  As well as he's doing, he isn't ready to come home so this is the next logical step and we are so glad our insurance is in agreement with that!  This Friday Eli will have a repeat swallow study to see what progression he's made in regards to his safety while eating and drinking.  On Monday he'll finish his six week course of antibiotics and his PICC line will be pulled out.  When they do that, the docs want the tip of it to be cultured for any possible infection.  Once that's clear (because it just HAS to be negative!), we can go to SMMC.  As of now that could happen next Wednesday or Thursday.  We'll know more over the next few days.

***Eli is continuing to surprise us with things he can do.  He's still riding the special trike I wrote about last time.  Yesterday (Tuesday Feb 25) was a great day for him.  In his morning OT session, he was placed on his feet and he stood, unassisted, for 20 seconds!!!!  Then we had his weekly care conference and that was one of the highlights we discussed.  Later that afternoon Eli was working with PT.  During that session he walked!  The therapist stood behind him and held him around the torso.  She used her feet to push his feet out and they walked about 50 feet from the gym to our room where I was.  I dropped to my knees in the hallway and hugged my tired little miracle boy so tight as the tears fell.  Today he walked in a joint PT/OT session this morning with one therapist behind him and one in front of him.  It was better than yesterday and he worked harder at moving his feet himself.  This afternoon he walked during his PT session.  He used a walker (one of the tiniest little things you've ever seen and it's adorable!).  We used an ACE wrap to keep his left hand on the walker and a styrofoam plate taped to his left foot to help him slide it instead of getting caught on the floor.  He did amazing again.  After he walked, they had some playtime in the gym.  Then he rode the trike down the hall and back past the gym to our room.  After all that he still wanted to go to the playroom!  We did for a while but his body was much more tired than Eli was willing to admit so he rode in his wheelchair as I walked him around the hospital.  This is more than we thought we'd ever see him do again and it's only been five weeks since his strokes.  We are so amazed by this little boy!

Keep the prayers coming! 

- for Eli to continue to work hard in therapy and get the most benefit he can from the therapists and staff here at PMCH
- for a smooth transition from PMCH to SMMC.  It's taken a long time for him to trust these therapists and this is our biggest concern with switching facilities
- for Eli to have an easier time going to bed.  He works so hard through the day and it's really hard for him to let himself shut down at the end of the day.  For the past three nights he's spent at least an hour screaming for whatever he fixates on that night (first night was food, second was to remove his boot, and tonight was for me to carry him in the halls).  He's getting some meds to help him at bedtime and it has made a positive difference, but Eli still has to do his thing
- for our heart buddy Liam who got a heart transplant yesterday.  The last report I had was that Liam was extubated, awake, and alert.  Please pray for his body to accept this new heart, for him to recover quickly so he can start intensive therapy for the massive stroke he suffered last October, and for the donor family as they grieve their loss.
- for many of the sweet babies and kiddos we've met through our weeks here at PMCH.  We've seen many come and go and we've been lucky to get to know several.  They're all facing their own struggles and a prayer for good health and to ease their burdens is always appreciated.

I'll provide more information about our transition as it comes available.  I'd love to post some pics of Eli here tonight but that's going to take too long and the couch is calling my name!!!  Thank you for the prayers and all the support.  We can never thank you enough!

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