Thursday, April 18, 2013

Hospital Life...Day 24

Today is Day 24.  If you missed yesterday's update, you can read that HERE.

Not a whole lot happened today, but it was a hard day.  Since switching to the Morphine pump yesterday, it seems that either Peyton's pain has intensified or the dose isn't where it needs to be. She is experiencing a lot of breakthrough pain.  It happened a couple times yesterday but several times today.  She gets respiratory treatments three times a day.  These involve putting a vest on her which is hooked up to a machine.  It vibrates at various intensities to help get the junk loosened up in her lungs so it can be coughed up or suctioned out.  The process of raising her up to get the vest on became absolutely intolerable for Peyton today and absolutely heartbreaking for me to watch.  Diaper changes aren't much different.

The continuous Morphine dose was increased this afternoon and the doctor wrote for a bolus amount which could be given in the event of breakthrough pain, although it's probably only allowed every so often.  The Toradol, which was added a day or two ago, is only a temporary pain killer.  She can only get up to 6 doses, so it won't be long before that's not an option.

Peyton had a visit from her school physical/occupational/and speech therapists today.  It was so nice of them to come by to see her.  I so appreciated the company and their generosity as well.

Moira had her 9 year old well check up after school today.  She's in the 50th percentile for weight and 10th for height.  She is 4' 1" now.  She may be short in stature, but she's big in energy, spirit and love for her sister.  While they were there, Ron filled the pediatrician in on what's been going on with Peyton.  He is her pediatrician as well, but she sees so many specialists that she doesn't really see him too often except for well check ups.  He did not know that Peyton was in the hospital.  I wasn't sure if he would have known or not.  I wasn't sure how that worked - if they were notified that one of their patients was in the hospital or if they just received copies of the discharge notes.  It wasn't long after Ron texted me to tell me how Moira's appointment went that the pediatrician was up here seeing Peyton as a visitor.  It was unexpected but very much appreciated.  As with all of Peyton's caregivers, I truly appreciate all that he has done for her.

I didn't get a chance yesterday to get a group of photos loaded on to my computer, edited, and watermarked, so I'll share them with you now.  I was going to post a picture of Peyton today, but her pain just breaks my heart too much right now.  Instead, I'll share with you something I did with Moira yesterday!

MUSC has a playroom they call "The Atrium".  It's right on the same floor Peyton is on.  It's open during certain hours of the day.  Children who are in-patient and who are able, as well as their siblings, can go to the atrium when it's open.  There are a lot of activities for kids of all ages: reading, painting, "house", dollhouses, music, air hockey, Wii, and even a separate little lounge area for ages 12+.  We had fun in there for a little while last night before they closed for the evening.  Allow me to share with you those pictures.


Your prayers for Peyton are greatly appreciated.  Her pain is intense and it is so hard for me to watch as her mother.  I can't imagine what she must be going through.  I'm sure there will be more discussion about pain control in the morning.  In addition, we'll be talking about those respiratory treatments.  I believe we still need to keep up with the actual breathing treatments {nebulizers and inhalers} but I just don't know if continuing doing the vest is in her best interest right now.  If her comfort and pain management is such a priority, doing the vest treatment is totally counter to all of that.  Pray that Peyton gets some relief soon.  As for her leg, there is no change.  That is the other huge concern.  Pray for that as well. 

It's just a heavy day.  First there is Peyton and everything going on with her.  There's so much going on in our country that is so sad.  Then I saw the news today that a young woman from our church passed away suddenly and unexpectedly.  While I did not know her personally, I knew who she was and I knew she followed {at one time if not recently} Peyton's story and was touched by it.  My heart is heavy for her and for her family and friends.  I didn't know her, but I had a couple message exchanges with her on facebook over the past year or so.  I am honored to have touched her life in some way and am saddened by her passing.  I wish I'd known her better and I will miss seeing her smiling face around church.  If you can remember her family in your prayers, I am sure her friends and family would appreciate it.

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