Update 3-28-2016

Amber found a facility, and it seemed hopeful.  There were some issues that maybe if we can get those adjusted in the future, this could be a place we might be able to consider.  Currently, it just is not the place for him at the level of care he needs.  We found that they had been misinformed on his needed level of care.  So were two other facilities, but they had assessed him in person and knew he was not ready to leave.

Pray for this not to become unpleasant with them, we are not trying to do anything that is improper, we want him to move forward though and it will require supervision and some safety measures that this facility cannot provide.    Pray for his continued improvement and our patience in this whole matter.  Pray also that Barrows will be understanding in this.  In His love…

Update 3-24-2016

Barrows is still saying Adam is ready for discharge, papers ready.  They are now saying that he is suddenly not progressing although we have notated every day a majority of the therapists saying that he was improving, progressing and even ‘surprising them’.  That also includes nurses and nurse’s assistants, who have seen him speak more, sing (shocked two) and other new things.

On the 14th, they gave him a laxative, it was supposed to be a one time help, and unfortunately somehow was overlooked and over the week plus that followed he got little sleep day or night.   We figured out the problem and insisted they called the doctor to discontinue it, because it was repeated one more time after we discovered it.  Other than that, he has been doing well and slowly getting stronger.   Insurance however is a different story.  Evidently there is some invisible line (that they are all aware of) that once you pass, it is time for you to leave.  Problem seems to be, that everyone they want to send him to says he still needs to be here.

The Skilled Nursing Facility that Barrows suggested and I was basically settled on (near our house) today told us they could not take him, because he still needed ‘ACUTE REHAB’ and that they could not meet his needs safely.    They have suggested this is a Mercy Care/Altcs possible denial of payment issue.

I have contacted my Representative David Schweikert, and every skilled nursing near me, right now we are again not knowing what to do, in a state of flux, we so appreciate the prayer for us all.  Love, Holly and Adam

Update 3-22-2016
ps 126-5-6

Once again I was offered ‘help’, just not the kind of help I was looking for.

Options are not great for the next step but we trust God is directing our steps (Prov 3:5-6).

We have looked at several facilities, some absolutely dismal.

First we picked one that we were told was covered through Adam’s insurance.  It was the best and the closest to home. Then the Social worker at Barrows told us they did not take his insurance along with another in Paradise Valley (turned out not to be correct in PV, they just didn’t have a bed available.  An email to his insurance company and I found out the information I was given was incorrect).

We tried again, and got another possibility and are awaiting the answers there.  In the meantime, we were looking at a couple more facilities that now Barrow’s social services department says they ‘have no beds’ in their time frame (no answers from them as to when these places have beds, but not when they want us out — tomorrow).

I received a call from the neuropsych yesterday.  She asked me how I was doing considering ‘all I had been through’ (and they said she didn’t need to know).  I told her I was doing fine in the circumstances, and making some slow progress on finding him a place, but was hopeful.  In light of my response, I was mildly amused when once again she offered me the possibility of ’emotional support’.   (As some of you remember, she told a friend who is a volunteer caregiver, that she felt I needed emotional help which she could help provide – not as professional as I would have expected from them).  I did not get upset with her, I just shared with her that I did have a great emotional support system in the Lord, and my wonderful family and friends.  I explained that my emotions had to do with wanting the best for my loved one, as is only natural and normal (unless you are hard-hearted).    I told her my frustration was with the lack of information, available options for his future, and communication regarding those options (I filled her in with some general issues).  Basically when I was done going over those things that I felt they could do better for the next person, she nicely asked me if I would consider counseling.    I just shook my head and laughed quietly at the irony.  (Counseling  from them — for my frustration that stems from them (the lack of information, options and guidance on where to go next, and some mistakes I won’t share here).  The sheer time consumption that has been caused by the lack of help in this one department.  I’d like to know when she’d like me to pencil in that counseling appointment had I been willing to take her up on it 🙂

I did not get angry or even feel angry.  I wouldn’t have wasted more of our valuable time if I didn’t have hope that it might help the person behind me not get the same treatment.   I told her Barrows is excellent in so many departments, but for families who aren’t familiar with the maze of paperwork, or navigating that maze (how to find a facility, what type of facility to look for, as well as what kind of questions to ask, etc.) they feel as if they are the blind groping in the dark.  I suggested that they needed a little more strength in that department so that people wouldn’t be so stressed in being pushed to get out, yet not have an acceptable place to go.     After all that, her next suggestion was that I join a support group for caregivers there at Barrows.     (Wow, this could have been a good skit if it was not real life).  I let her know that from the beginning,  I was in several TBI support groups online, but once again shook my head at the comedy of everything I said just either ignored, deflected or distracted with useless offers of unneeded help, while our real needs were not addressed.

I told her the concerns of other patients I had spoken to regarding the same problem and my own concern of the one who is unequipped who will deal with this.  She again seemed unaffected by the information. So I finally told her I needed to go to attend to Adam (and I did), and hung up the phone still shaking my head.  I know the information is out there somewhere, it is hard to find the time when you have so many other obligations and not enough time in the day.  Time is the commodity being wasted here in a lot of these places. Re-organization of their information, their medical record’s department,  (they wouldn’t release to Social Security and never told me — I didn’t know for five or so weeks).  A FAQ readily available to help families know what they may need to ask.  More available options in their social services department in helping to facilitate a smoother discharge (i.e., a list of ALL the facilities that took his insurance, not just the ones that had immediate beds), all these and more could go a long way in this otherwise fine facility.

Please continue to pray we make the right decisions for the best in Adam’s care.  We sure appreciate you all.  Love in Him, Holly and Adam

Update 3-15-2016

praywithoutmomSo sorry I don’t save my updates, and even though I haven’t felt much like writing or anything else, I did update, but it seems WordPress wasn’t saving them (or at least the last two), so I must have reached my limit.

Today it seems the physician assistant came in and decided to remove Adam’s safety net from his wheel chair.  Yesterday the nurse moved his room around because he’s a fall risk and she only wanted one side for him to worry about for him to fall out of.  He just fell out of his chair a few weeks back when one turned their back on him for a few seconds. So we can’t understand why they would take this risk.  When asked, the nurse said I had been told (untrue, I wasn’t there today).

When I asked the person to relay to the nurse my concern, the nurse said she couldn’t put them back on for safety without the doctor’s orders.   The same nurse that moved the room because she was afraid for Adam to fall.  The same one present when he was almost dropped.  The same one seeing him instantly lean forward on the wheel chair, so the safety net (which I had just washed) stopped him while we were talking.

So please pray for Adam’s safety while we are not there.  Mostly we are with him, but what about the times we are not?   Please also pray for the things that they say without thought in front of Him.  Pray for his mind to be guarded.  The day before the nursing assistant almost dropped him a couple of times and hit him on his head turning him on the bed to dress him.  He was just too small to do these things by himself and Adam is not strong enough yet to help someone as slight as this young man was.

I know insurance presses to not pay, (although Mercy Care says they are not) and he is improving, but maybe not fast enough for how much time they want to spend.  The meeting we had with the Case Manager of Barrows and the Case Manager of Mercy Care, well, let’s just say although they met first in her office, not one of us (there were six caregivers present) got the same story from them, completely conflicting and we called them on it, and still have not had a satisfactory answer, or really any answer more than ‘here is the map to the medical records dept’.

We need a more long term facility, but not knowing where to go. The Mercy Care case manager gave us a list, so far two of them, they do not take their insurance.   I suspect it is the same with the other ones but will wait to hear instead of doing any more research.   How is it they don’t know their own providers?

We were given a set of places by Barrows Case Manager (only two) that are about 10 miles away from my house (a conflicting set to what Mercy Care gave us entirely) so we’re pretty confused about our options.

We’re in a state of flux, tired, and worn, yet not without hope.  We continue to see change, we just don’t know how to continue to get help as they seem done.  This situation is strange, to see them unwilling to continue, I guess I just don’t understand how the system works.  The Lord knows.

The neuropsych there suggested to one of my friends who was in the room with Adam, that I might need ’emotional help’ and she could probably help me there 🙂  There is no doubt, I am emotional, this is my son.  But I believe I will be found to be stable 🙂 There’s more, but I’ll just save it for now, because I truly have no desire to hurt her or anyone, just shaking my head at these things.  (If it wasn’t so unreal that a ‘professional’ would say something like that, it would almost be funny).

But, really, I do know that my help comes from the Lord, so I wish they would focus their attention on the one they currently have admitted, that is Adam of course.

Lord help our situation here with insurance and other things that You know of that we don’t seem to have much control over.

I will lift up mine eyes unto the hills,
from whence cometh my help.
My help cometh from the Lord,
which made heaven and earth.
He will not suffer thy foot to be moved:
he that keepeth thee will not slumber.

Psalm 121:1-3

Update 3-9-2016

This is not as good of an update as I would wish.  I can basically share this last week has not been very good.  Physically, Adam is weaker and not as responsive.  We are having difficulty getting the staff to hear, and even getting them to chart changes although we have asked.  I talked to a Dr. Merkel today in tears, she said she would share my concerns with the staff tomorrow.  But the other doctor left a message saying Adam is the best she has seen him since he’s been in.  I don’t know what she is seeing, but it’s not what we are all seeing at all.  We are very concerned at the changes, and can’t quite get staff to ‘hear’ and do anything, so we appreciate all your prayers.  We are tired and discouraged, but we take it to the Lord in prayer.  As the old hymn reminds us:

What a friend we have in Jesus,
All our sins and griefs to bear!
What a privilege to carry
Everything to God in prayer!
Oh, what peace we often forfeit,
Oh, what needless pain we bear,
All because we do not carry
Everything to God in prayer

Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged—
Take it to the Lord in prayer.
Can we find a friend so faithful,
Who will all our sorrows share?
Jesus knows our every weakness;
Take it to the Lord in prayer.

Are we weak and heavy-laden,
Cumbered with a load of care?
Precious Savior, still our refuge—
Take it to the Lord in prayer.
Do thy friends despise, forsake thee?
Take it to the Lord in prayer!
In His arms He’ll take and shield thee,
Thou wilt find a solace there.

Update 3-6-2016

They switched Adam’s room two days ago.  He is no longer directly across the nurse’s station in a small unit, but in a large hall.  He cannot call for himself yet, pray, we are not getting near the help for any stands/transfers etc.  Now three people, two nurses and a male nurse’s assistant together said they could not get Adam to stand for a transfer.  In the other room, all were capable of doing it, except this same nurse’s assistant who is a very small man, probably only weighing about 120 lbs.   So this is discouraging, and so please pray with us about this.  Also about the change in medication, the side effects seem to be diminishing, but we are also not sure if the benefits of it are also lessening.  Pray for wisdom there.  We know the Lord will continue to direct our steps, pray that these obstacles do not encourage us, but that we will pray without ceasing.

(I always told Adam since he was a child not to write on himself.)  I had prayed one night about a lot of the things I need to do, were upcoming to do, things I were forgetting that I so desperately needed to remember.  One was praying for more things vs. worrying.  The verse instantly came to mind.  Pray without ceasing.  I teased with the Lord, “I’ll probably forget that too”.  I thought to myself, “write it on your arm, you won’t forget” (I was recalling the Lord’s Words to the Israelites when He told them not to forget His commandments).

So kind of in jest, yet in a genuine desire to remember something this important, I wrote it on my forearm.  When I got to the hospital, and read it to Adam, he pointed to his wrist.  I told him, “remember I told you never to write on yourself when you were a kid”?  He nodded and pointed to his wrist again, so I asked, “do you just want ‘pray’ or ‘pray without ceasing’?
“Pray without ceasing”.  So I wrote it on his wrist and he pointed upwards.  I asked what it was he wanted, and he pointed to his wrist.  I asked if he wanted an arrow on his wrist, he said he did.  I asked him to point to which side, so with his seized up left arm, he pointed to the right side of the writing on his right wrist.

praywithoutmompraywithout

Hear, O Israel: The Lord our God is one Lord: and thou shalt love the Lord thy God with all thine heart, and with all thy soul, and with all thy might.  And these words, which I command thee this day, shall be in thine heart: and thou shalt teach them diligently unto thy children, and shalt talk of them when thou sittest in thine house, and when thou walkest by the way, and when thou liest down, and when thou risest up.  And thou shalt bind them for a sign upon thine hand, and they shall be as frontlets between thine eyes. And thou shalt write them upon the posts of thy house, and on thy gates.  Deut 6:4-9

Three people, two nurses and one nursing assistant were unable to transfer him today. They said he was drawing up his legs and not helping to stand.  That he wasn’t strong enough and physical therapy needed to get him stronger for safe transfers.  I agree, but will the doctor or the physical therapy team.  Please pray that they will be able to get him strengthened enough to do what he needs to do to get home when the Lord is willing.