Nightmare

After a 2 week stay at Baylor, it was decided Graham needed to be moved into a long term care facility.  Doctors decided, not us.  But it was sold to us- very close to home, bigger rooms, smaller facility, better food, REAL toilet paper, daily physical therapy, occupational therapy, better machinery, top of the line doctors who are very familiar with lung transplant patients and best of yet - a former Lung Transplant Coordinator that worked under Rosenblatt was in charge of the Mansfield facility AND she knew exactly who we were!  They were also VERY proud to announce that they DID have Zerbaxa - apparently a rare drug.

A full 24 hours after we were told we were coming, Graham entered the doors of the hospital.  And this is where all happy optimistic thoughts faded away.  I will not stress you out, or bore you, with the numbered, dated and timed list I have going on for documentation; but I will share an overview - because I am so flabbergasted at how poorly someone can do their job...especially since their job is saving and keeping lives.

To begin with, this facility (which I will not name in this blog...yet) was not prepared and did not have ANY of his meds.  Not even a vitamin.  We were promised them by nightfall so all I went to retrieve were Creon Enzymes (important to know it HAS to be this brand) so that he could eat.  By 11pm when I left, still no meds and the atmosphere changed drastically.  There were ABSOLUTELY no smiles and kindness and bedside manners appeared to have been thrown out the window eons ago.  This is when the bigger problems began.  To appease Graham, they scrounged around for some meds...mainly vitamins and his singulair.  After giving one an IV Antibiotic (yea, they found one), the nurse proceeded to flush his port incorrectly...Saline, Heperon, Saline.  Graham informed her and explained she was wrong - nicely I might add, so proud of him - but she went on her way.  Chaos ensued in the middle of the night and without disclosing too much, it ended with him pulling repeatedly on the bathroom help cord and screaming at the top of his lungs with no O2 because it was turned off.

Day 2: Some meds, but none that keep him alive...you know, like his anti-rejection meds.  But the nurse did try and give him Singulair again...6 hours AFTER he had taken the previous one (it's a 24 hour med).  Between the Respiratory Therapist and I, we decluttered and set up his room appropriately.  All his equipment was clustered in front of his bed preventing him from going to the bathroom and the 4 things he needs hooked up to O2 were all sharing 1 O2 spout.  Rick - the RT - is awesome.  Later in the day, day nurse comes back in, all excited that he has anti-rejection meds!!!  He proceeds to tell Graham what they are and the dosages.  Graham questions one of the pills, it does not look right, but nurse assures him it is.  Found out the next day that the nurse gave him twice the dosage that should have been given.  More promises of meds but nothing comes through - now the admin are concerned and in walks 2nd in command of nursing.  Mainly to start documenting and saving their jobs.  He gets the full - dated stamped version...and he is in shock.  All he can do is shake his head and apologize.
Night shift comes in and it begins to all unfold in front of him.  They know nothing about Graham's meds.  One nurse refuses to do a thing, the other ACTUALLY goes and researches and figures out he is supposed to have another IV Antibiotic - but uh oh, someone changed the orders and now it's a drug he's not supposed to be on anymore.  But since they are the orders, Graham gets the med!  Then when do nothing nurse goes to flush his port - she tries to flush it wrong again.  Graham tries to stop her but she won't.  I had stepped out into the hall with Manager - we came back in to Graham raising his voice at her.  Graham tried to have her explain to "the man" what she had done, she refused.  Man then gave her an order to lock it with Heperon.  We explained to him that this port is gold...it needs to be treated like a new born baby...because it is his ONLY access and without it, he will die. 
Man and I stepped outside the hall again and he asked why I'm not pissed, that he would be.  I corrected him and let him know that I am pissed.  "Then how are you keeping your composure?"  I replied, "What is yelling going to do?  Besides, my Momma would slap me if I did.  Once I begin yelling, you know it has gone to places that you can't return."  Sadly, I raised my voice 24 hours later at this Man.
As I was leaving, nurse still had not returned to lock his port.  I went to the station and it was obvious that she was down right defying her superior's orders.

Day 3:  I was told Man and Head Pharmacists would be here after church, so I made sure I was here.  Graham struggled staying awake so 3 hours later, Jordy and I left.  He always feels as if he needs to be awake with us.  At 8:45pm, Barbara and I got a text "I need help up here ASAP.  THEY ARE GOING TO KILL ME"  I learned that I can get from my house to the hospital in 6 minutes.  I also learned that unlike Dallas folks, people will pull over for you in Mansfield if your hazards are on :)

This whole experience has been a nightmare with lack of meds to no meds, improper dosages, switching meds, and incompetent employees.  Admin is almost as angry as we are and remember the lady who knows us - she was on vacation and didn't enjoy it much because she was on the phone the whole time about us.  All the stress and lack of needed meds from the weekend caught up to Graham on Monday.  He fully believed he was about to die...and his stats showed it too.  Looks like this place was going to kill him.  It is one thing for it to be his time, that God is ready to take him...but it's a completely different thing for someone, from out right neglect, to kill him. 

Between the meds they had and the meds I had with me of Graham's, we were able to stabilize him yesterday afternoon. I have now taken the rest of the year off, which trust me, is a true struggle.  I LOVE my job and LOVE having all the end of the year fun with all the kiddos I have grown to love over the year...but I LOVE my husband and cherish our life more.  And sadly, I do not trust leaving him alone with a hospital that is supposed to make us feel safe.  Admin has promised a complete turn around and has told us one nurse will no longer be employed anymore.  We'll see...