Another New Normal

Yesterday was a long day of playing "hurry up and wait".  We were anticipating being able to bring Peyton home yesterday, but we had a couple things to get out of the way first.

First, it was Valentine's Day.  Peyton has never spent a "holiday" in the hospital.  Of all her admissions, I'm pretty sure this was the first, although it's been close before.  Ok, so it's not a major holiday, but it's a recognized "event" if you want to call it that.  The tech came in to her room at some point during the day and handed me this:

It was also decorated and signed on the other side as well.  Signatures include the tech who delivered the card, various nurses, her Respiratory Therapist, and even the cleaning staff!  Later in the day, Peyton got a big red heart balloon.

Before leaving, two physical therapists from MUSC led a little education session for myself and members of Peyton's home nursing team {one of her home nurses, the business manager, the nurse manager, and one of the other nurse supervisors}.  Everyone wanted to be present for this so that we could all be on the same page as far as how we need to handle Peyton now.  She needs to be handled in a fairly specific way now, considering the multiple current fractures and the brittle bone condition.  They looked at how to handle her for diaper changes, moving her, and transferring her from crib to wheelchair and to her car seat, which Ron had brought up the previous night.  That went very well.  Any concerns or questions were handled, so that was reassuring for me as we prepared to bring Peyton home.  It worked out well {read further down about how Peyton got home}, because the nurse who would be working once Peyton got home was in attendance and she offered to bring Peyton's wheelchair, car seat, and a couple of our bags home with her so she could bring them later when she would come to our house to work.

There was a question of some outstanding labs that were being requested.  These were specifically for the purpose of Genetics in Boston.  Several things are being coordinated between them and our Neurologist here at MUSC.  Dr. K has been wonderful.  I really do like him.  I have a great deal of respect for him.  He has been extremely helpful in coordinating efforts with Dr. T in Boston.  There are lots of hurdles and challenges, especially considering the nature of these tests, being that they are really for research and not part of a treatment protocol.  So, many thanks to him for leading this effort here locally for us.  That said, there are tests which are needing to be done.  When the doctors rounded yesterday, we found out that we're just going to work on getting those taken care of when we see Dr. K in clinic next time.

Then came the discharge process.  There are issues with Peyton's wheelchair as it is right now.  It needs modifications made to it so that it is safer for her.  That said, until that happens, we can't use it safely.  That will happen on Monday, but until then, we can't use it.  The nurse case manager made arrangements for Peyton to get medical transport home.  Once they were into the discharge process, they called the number {this is through Medicaid} and an ambulance was arranged for her.  Now, it's kind of like AAA in that you call a number and they find an available provider to handle the service.  The wait time could be anywhere between 30 minutes to three hours.  Our wait was closer to the three hour mark.  But I wasn't complaining - this was the safest way to get Peyton home.

Around 5:30 the EMT guys arrived in her room with a stretcher.  They simply pulled the fitted sheet off the mattress, and rolled the ends together over the length of Peyton's body, and {holding her carefully} shifted her from crib to stretcher.  They got her all bundled in and strapped down.  They had an oxygen tank right there on the stretcher, so got her hooked up to that.

At the nurse's station, we stopped as there was some paperwork to handle.  I had to dig out Peyton's insurance cards so they could get a copy.  It only took a few minutes.

We then made our way to the elevator.  It's a bit of a maze getting from the 7th floor down to 1st on the patient transport elevator.  We wound our way through the adult ER {changing direction once or twice}, and out the ambulance entrance.  They got Peyton loaded into the ambulance.  I originally was under the impression that it was strictly a ride only, but it was, in fact, full ambulance service.  They hooked her up to the pulse ox monitor and adjusted her oxygen when the EMT thought it needed to be bumped up a little.  He was very attentive to her and very concerned about any bumps we might hit on the road.  He was concerned for her safety and comfort.  Very nice.

This was Peyton's view {I snuck a couple iPhone pics while on board...I was in the back with them}:

We made it home somewhere around 6:30, give or take.  It's funny how an ambulance showing up will bring out the neighbor kids.  We had two or three show up {I think after we actually had Peyton inside}.  When the EMT guys left, I saw them talking to the kids as they put the stretcher back in the ambulance and closed the doors.  Peyton was brought into the house on the stretcher.  As her room is immediately to the right as you come in to the house, it was a bit of a tight turn, but they managed to get the stretcher into her room, right up next to her crib, which is like a hospital crib.  They basically did the reverse process as to what they did to get her on the stretcher.  It all went smoothly and they finished up and left.

Within 30-45 minutes of arriving home, the doorbell rang.  There was a lady at the door with a box.  I didn't recognize her, but she said she was from our church.  She had the biggest smile and was just so sweet.  She had brought us food.  I was just so surprised and, of course, thankful.  I posted something on facebook and it seems that this was food sent over to us from our church's Luke 14 banquet which was happening last night.  If you don't know about that, you can read more here and here.  It is a banquet put on at our church to honor people with special needs - young and old alike.  It is a wonderful event and we have been blessed to attend the past three years.  It wouldn't have been possible to go this year anyway given Peyton's overall health issues, but certainly not this year with her being in the hospital.  That someone would even think to send over a meal for us from that banquet is just so incredibly thoughtful, it brings tears to my eyes.  So, thank you!!

So, we are home now and we are trying to settle in to this "new normal".  I am sure things will feel better in time, but right now it is scary.  I'm scared to touch Peyton or to move her the wrong way, or to know that I could potentially inadvertently break her!  She requires so much more care now - not that she didn't require much at all before!!  It's a new set of challenges to deal with.  It's a new lifestyle.  I have felt fairly tied to home before all of this.  Yes, we do leave the house to go to church or run errands.  We will leave home for a few hours, with Peyton in the care of the nurse.  Recently, we've only brought Peyton out of the house for doctor appointments.  That much will stay the same, but bringing her out for those appointments now will require even more care and effort.  And I feel like I'm hesitant to consider leaving the house for any reason now.  Me - not with Peyton.  It would certainly seem that our pending trip to Boston is off the table for now.

Peyton is fussy today.  She's due for her pain meds right now.  Like clockwork.  You can definitely tell when she needs them.  It's so hard not to cry when I see and hear her like this.  

I want to thank everyone for their prayers and support.  We still need them.  Do we ever!!  We have received so much love from so many people - people we know and people we don't.  From family to friends to church family, we've been blessed by all your support and prayers.  Then there are people who are friends of friends, or friends of friends of friends.  There are friends I've met through blogging who have been praying, and others in the blog world who are but who I don't know as well {or at all}.  I love watching blog stats, and this blog is no exception.  I'm looking at where people are coming from in the world and it's been amazing to me.  So if you are here and are following her and offering support in some way though you do not know us, thank you.  If you are one of her caregivers or know her from the hospital of from somewhere in the community, thank you.  If you are a member of our church - or another church - or are finding your way here because a friend asked you to pray for Peyton, thank you.  However you wound up here, we truly thank you for all your support.  And for your continued prayers and support.  This is an ongoing challenge and there are a lot of new issues which are going to make our world just a little more {maybe a lot more} challenging and we need your prayers.

Thank you for everything.  Thank you for visiting.  As always, I'm going to keep posting on her progress here.  I hope that you'll come back to check in on Peyton.