Friday, April 26, 2013

Hospital Life...Day 32

Today is Day 32.  If you missed yesterday's post, you can read that HERE.

It's April 26th.  It was on March 26th that Peyton's home nurse and I took her to the ER with what wound up being a new fracture; the femur this time.  What was supposed to be a one night stay for pain control has turned into 32 days {and counting} involving fractures, pain control, a couple blood transfusions, albumin and iron infusions, several potassium infusions, and the list goes on.  A "simple" fracture set off a chain of events in Peyton's body which have brought her into a completely new season of declining health, to the point where we haven't been sure how this is going to play out.

We weren't sure exactly how today was going to play out.  Last I had heard, there was still some uncertainty as to what the latest gallium scan showed.  We were hoping that it would show us definitively whether or not there is infection in her leg, and if so, if it was just in the soft tissue or was it deeper down, including into the bone.  There was also the thought that Peyton might need to go down for another series of scans today.  

Yesterday was so difficult for Peyton considering all the transfers from the bed, onto the table and back {a couple times over}.  She was in a lot of pain from everything she'd endured for the scans.  In addition, the doctors are really trying to get her pain controlled, and they decided that they would transition her from the continuous Morphine {with extra bolus doses every couple hours or so as needed} to a Fentanyl patch coupled with extra Morphine doses if needed.  That transition began at about 3:00pm yesterday.  At 3:00am this morning the continuous Morphine was stopped and a new regimen for the extra Morphine doses was implemented.  She is also still able to get Ativan every so often if she needs it.  

In hindsight, I think it would have been better to start the new pain regimen today as opposed to yesterday, giving her another several hours on the regimen that she seemed to be doing {sort of} ok on.  Not knowing how well her pain would be managed with this new regimen made me a bit nervous. She did have more issues with pain control today.  A plan had to be worked out to get her to a good place {at least a plan to get her into a good place...not sure she's quite there yet!}.  A contingency plan also had to be worked out for the weekend just in case this plan doesn't work out as hoped.  Hoping and praying that her pain is a little more controlled as we settle into the night and over the weekend.  Last weekend was pretty rough.  I don't want to get back to that again!

As for Peyton's leg, it does appear that it is infection, but it is not clear as to how deep it goes.  It does appear to be pretty extensive but whether the bone is involved or not is another question.  Because it is unclear, and because of Peyton's pain issues and just her comfort and what we desire for her care in general, we didn't go ahead with any other scans today.  The doctors are going ahead and treating this as if it did include a bone infection.  What this means is that she will continue on her course of antibiotics for several more weeks.  She has already been on them for two weeks.  The risk of stopping them now and assuming it's not a bone infection is not worth it if it does happen to be in the bone.

In other news...

We have been truly blessed by the generosity of so many people.  I've mentioned many of the ways in which people have blessed us over the past month.  One woman from church has been so sweet to me, coming up here several times with food and coffee and magazines.  She belongs to a group at church called Missional Moms.  They have been praying for Peyton and have been wanting to help our family in some way.  One mom had the idea of cleaning our house for us.  A group of ladies mobilized quickly to set up a date and time this week to come and do just that.  For as many ladies who wanted to actually do the cleaning, there were as many who were quick to volunteer their time to babysit all of the children of those ladies so they could do this for us.  Today was cleaning day.  I cannot tell you how grateful we are for their generosity - for their time, their willingness to do this, their elbow grease, and so on.  I am just as grateful to the moms who spent the morning at a nearby park minding the children of these ladies so that they could be in our home.  Thank you ladies from the bottom of my heart.  I know it was a huge coordinated effort to make this happen and it was so very much appreciated!!

A little later in the day, we had a couple visitors.  It was one of the nurses and one of the techs from this unit.  They were in street clothes.  They came in with a little gift for me.  They knew that today had the potential to be another challenging day with the possibility of more scans.  Fortunately that didn't happen, but we did have pain issues to contend with.  Many of the people around here are becoming familiar with this blog, but some are also finding my other blog the Fontenot Four.  If you are familiar with that blog, then you know that I receive a monthly Birchbox that I also review on the blog {I buy it one compensates me for that!!}.  Anyway, these two ladies know my love of Birchbox and decided to give me a little treat with their own version of one!  I have to say, I'm pretty impressed with their version!!  It was so sweet of them to think of me and to do this for me.  I really really appreciate their thoughtfulness.  

This evening I made it all the way down to the first floor!!  Ron spent several hours up here and we went to the cafeteria together.  Like a date almost.  A whole 10-15 minutes at most.  You have to realize that this was newsworthy because I haven't been to the first floor of this building in 32 days.  I am on the 7th floor with Peyton.  Radiology is on the 3rd floor.  When we had the family conference a few weeks ago, it was on the 8th.  Any family dinners that the volunteers put on from time to time are also on the 8th.  We got some dinner and went back up to my "home" on 7.

It's weird when I think about it.  32 days.  I haven't set foot outside in 32 days.  I haven't ridden in or driven a vehicle in 32 days.  I haven't used a hair dryer in 32 days.  I have had what I "affectionately" call "hospital hair" for 32 days.  My hair air dries funny.  "Normal" for me is more like my picture under the "About Me" tab in the top right of this blog.  I haven't cooked a meal in 32 days.  I haven't done laundry in 32 days {although I have an amazing husband who has...and I do get fresh clothes every day!}.  I don't have a huge supply of personal items here.  It is absolutely amazing how little one really needs to get by on a day to day basis.  As a side note, I don't think there has ever been a time in my 40 years where I've gone 32 days without being outside or riding in a car.  Isn't that just bizarre??'

We are heading into the weekend and we will have a new attending.  Our 7th.  However, we're back to one we've had before.  We've had Dr. M, Dr. T, Dr. S, Dr. W, Dr. B, Dr. McB {with Dr. W coming back one day this week to fill in}, and now we're going back to Dr. W for the next week.  All have been amazing.  The transition from one to the next always seems a little scary because you don't know what the know coming in and how things will go {or at least that's what you'd think}.  But truthfully, I have never felt like anyone dropped the ball on anything or that someone didn't have all the information.  It's been seamless.  That's saying something considering we're talking six different attendings in just over a month.  I am so thankful for each of them and for the perspective each has brought to this case.  I know it's a challenging case and I'm just so grateful for all they are doing for our precious girl!!

Please keep praying for Peyton, especially for her pain control.

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