Sunday, September 4, 2011

Being Flexible

Earlier last month I put out a call to prayer for a family situation we found ourselves in.  Our 5 year old daughter, Peyton, has multiple special needs and is medically fragile.  You can read her story HERE.  She has had home RN nursing services since about May 2010.  We started off with 56 hours a week and early this year she was bumped up to 72 hours a week because of her health condition worsening.  It then got bumped to 84 hours a week.  It was SO difficult to get a schedule that actually utilized all these hours (it's use it or lose it) with the agency we were with that we lost out on hundreds of hours.  We wound up switching to a new agency in a few months ago and just when we FINALLY were able to get every single one of those 84 hours a week covered, the powers that be at the Medicaid decided she only needed 70 hours a week.  I was floored.  That was a loss of 14 hours a week, which was huge for us.  Peyton is a child who needs round the clock monitoring, so whatever the nurses don't cover is completely on me and my husband (but mostly on me).  Then we were informed that we were being cut in the middle of August to 56 hours a week, which was even worse. If she needed 70 and even 84 hours a week, you can imagine what 56 hours meant for me!  I was also told at that time that that would run for a two week period, at which time we would be further reduced to 40 hours a week!!  Well...I can't even talk about how that made me feel.  No foul words...but oh my gosh, this news was devastating and heart-breaking, as well as incredibly overwhelming.  Fortunately for me, I had the surgery on my elbow on August 26th - two days before we were supposed to drop to 40 hours a week.  I was smart enough to ask if we could extend the 56 hours for a while to get me through recovery.  My doctor suggested two weeks, so that's what was extended to me for Peyton's nursing hours.  That all will start on 9/11/11.  Bear in mind, that's a week away and I still can't lift her.  She's almost 40 pounds and is like carrying dead weight, only worse because she flails around and can shift her weight so easily as to make it dangerous for the person carrying her!  I'm improving greatly, but lifting her isn't something I've found myself comfortable with yet.

All that is to give you the background on where we are at with Peyton's nursing and what we're up against in one week's time.  Peyton needs a nurse daily.  I need the assistance.  In June we had 84 hours a week and in one week we'll have 40 hours a week.  That's less than half of what she used to get!  I'm scared for Peyton.  Her health is much better now than it was this time last year.  In September last year, she was in the hospital yet again (one of about 10 or 12 hospitalizations over a one year period) and we were talking to palliative care people and specialists about the fact that we may need to put her on a ventilator because she was so sick.  It led to conversations with doctors about her future and how long that future would be.  It led to conversations with doctors and my husband about what to do in the event that..... (well, let's just not go there).  It led to conversations that no one should have to have about their 5 year old child!  The fact that she is as well as she is now (which is much better than a year ago but much worse than the year before that), is a testament to the level of home nursing care she has been receiving.  The cutbacks are government budget related and have nothing to do with what Peyton needs.  They see she's only had 2 hospitalizations since November of last year (praise God!), but they don't see that it's because of the nursing.  So...they don't want to pay for nursing, which will mean her health will decline and she will wind up in the hospital again...and again...and again...until they say, "Oh, Peyton needs 56 hours a week now."" (or 70 or 84)  Chances are we will never see an increase in hours.  Chances are this cutback will adversely affect Peyton and any gains we have worked so hard to make will disappear.

Peyton in the hosptal
{I have had quite enough of these images, thank you very much!}
We need prayer.  Peyton needs prayer!

All that said...we can't do anything about this at all.  Medicaid's hands are tied.  We can't fight it.  We can't afford a lawyer and fight the legal system on this issue.  We feel helpless to do anything, so we are in a position where were truly have to let go and let God.  All of this is somehow a part of His plan.  I have no idea what that plan could possibly be if it means she's going to decline further!  I don't know why His plan would have to involve her condition possibly worsening.  I don't know why His plan would possibly involve a greater burden on her non-nurse caregivers (namely me).

DO NOT GET ME WRONG - Peyton is MY child and I will obviously care for her.  I will continue doing everything I possibly can for her.  But I am HUMAN and have human limitations.  I have been sleeping in her room for the past 2+ years.  She's round the clock care whether I am here or not.

But as for her nursing schedule, I am having to come up with a 40 hour a week schedule for nurses who we love.  One is new but we love her.  Peyton loves her.  She loves Peyton.  Her hours, while not that many now, will be reduced drastically and I feel bad.  Our main nurse, who is our 40 hour a week nurse, will get most, if not all, of the hours.  She loves Peyton so much.  We need help 7 days a week, but I can't reasonably expect her to work 7 days a week.

Peyton's nurse helping her "stand" {she can't on her own}
~ note the cute cowboy boots she has her in!! }
Everyone is having to be more than a little flexible.

There's going to be some give and take.
Mostly take it seems like.

We've got to bend.
We've got to learn to adapt to this situation.

It's not a good situation.
For anyone.
Least of all Peyton.

So the past few days I've been putting my flexibility to the test trying to come up with some form of a schedule that will "work" for everyone come the week of 9/11 - 9/17/11.


No one is happy.  But everyone understands the situation.  No one's mad at anyone, except maybe Medicaid.

It's so frustrating.

But I've made a few passes at this schedule.  I dealt with the newer nurse yesterday and found out what works for her.  I dealt with the main nurse this evening and found out what works for her, while trying to maximize her hours.  She was getting far far fewer hours in my first go around.  Now the newer nurse is getting the far shorter end of the deal, but the main nurse is content with getting 36 out of 40 hours.

But it means making concessions.

It means being flexible.

Very flexible.

Giving up time.
To make other times better.

There will be a day when we have no nurse at all.  There will be days when the shifts are very short.  These times of "flexibility" are to maximize the time the nurses spend here on days that are essential.  For ONCE, I am FINALLY going to attend Seacoast Sisterhood mornings at church.  FINALLY.  I've not had the opportunity to attend this fellowship at church ever because of lack of nursing.  I decided I need this time FOR ME.  It also happens to be on Moira's soccer practice day and I need someone in the early evening.  I'm giving up an entire day of my week of nursing to make THURSDAYS work.  The nurse is sacrificing because, for her, it means working a split shift (a few hours in the morning so I can go to church and a few more in the evening so I can take Moira to soccer).


Give and take.


This is what it all boils down to.

EVERYTHING we find ourselves facing is in GOD's control and is in HIS perfect plan.  I can't say that I know what that means, but I know it to be true.  I know that I need prayers because it's going to mean a lot more on me.  I need prayers to remain faithful, a loving caregiver for Peyton, a loving wife to Ron and mother to Moira AND Peyton, and a grace-filled daughter of the King.  I need prayers for Peyton that somehow, some way she does not wind up declining in health as a result of these changes.  I know that she is also a daughter of the King and that He is watching over her and knows what is best for her, and for all of us.

Peyton {taking a break} and her nurse 


As a side note, this was originally posted early on the morning of 9/04/11.  Shortly after 6:00pm the same day, Peyton wound up in the ER because her entire GJ tube was pulled out.  This is an automatic ER trip because interventional radiology must replace it under fluoroscopy.  But not on Sunday nights...or possibly even Labor Day.  Peyton was admitted and I'm typing this update on 9/05/11 from her hospital room.  Maybe if we had proper nursing hours, her safety could be maintained and watched over more closely than I can do by myself when I have more than just Peyton to care for.


Ephesians 6:10-17 (NLT)

10 A final word: Be strong in the Lord and in his mighty power. 11 Put on all of God’s armor so that you will be able to stand firm against all strategies of the devil. 12 For we are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places.

 13 Therefore, put on every piece of God’s armor so you will be able to resist the enemy in the time of evil. Then after the battle you will still be standing firm. 14 Stand your ground, putting on the belt of truth and the body armor of God’s righteousness. 15 For shoes, put on the peace that comes from the Good News so that you will be fully prepared. 16 In addition to all of these, hold up the shield of faith to stop the fiery arrows of the devil. 17Put on salvation as your helmet, and take the sword of the Spirit, which is the word of God.


Romans 1:17 (NLT)

17 This Good News tells us how God makes us right in his sight. This is accomplished from start to finish by faith. As the Scriptures say, “It is through faith that a righteous person has life.”


Matthew 17:20 (NIV)

 20 He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

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