Sunday, January 17, 2010

Beyond Crazy (very long story)

Where do I start? Lets see if I can remember how the last 4 days have gone....all these days are jumbled into my own confusion...

On Wednesday Mom and I had another meeting with Dads admitting Hospitalist, the CCU Clinical Director and Case Management. It was useless. Each new day had been bringing a new nurse, and each new nurse gave medications for "anxiety" at their own discretion. This had to stop. Nurses weren't always following our requests to stop anxiety medications (which made Dad sedated and unable to cooperate with Physical Therapy to stand and walk) and they continued to give Morphine for pain when we asked them not too. Dad has had chronic back pain for years. He has slipped disks and arthritis, but his pain has always been managed by positioning. He walks, he stands. He lays down, he sits. He doesn't take any pain meds when at home. Morphine surely isnt needed. (it knocks him out, plays into the Psychosis and leaves him unable to co-operate when needing to get out of bed) A little more attention to moving him often and he would be fine. But they pushed meds instead. Because Dad needed to be positioned so often (he's been in bed for 16 days at this point) they had been giving him Perocet for pain. It was working very well for him. Thats all we asked...keep each nurse on the same page!!

But, then Dad ripped out his NG feeding tube while agitated (still in a state of ICU PSYCHOSIS, not helped by "anti-anxiety meds") so now he had no way of getting feedings OR Percocet for his severe back pain. (Can you tell this has turned out to be EVERYTHING but a Quintuple bypass???) Dad has a history of Esophagitis, exaggerated by multiple intubations from surgery and the Pneumonia. (which is clearing by the way) He cannot swallow since surgery, so he must have a feeding tube, probably for weeks. So, I suggested they do a more permanent Gtube in the stomach so we didnt have to worry about another tube getting pulled out. (not to mention it dangles down the throat and is uncomfortable to put back in!)

No feeding meant he was taken OFF the insulin drip. OFF. I explained he is T1, not
T2 and expected them to do what they need to do. Put him back on Lantus. I went home for the night, and came back in the morning to his blood sugar 638. They only gave him 5 units of Lantus!!!!!!! FIVE UNITS FOR A MAN WITH 30+ years of Diabetes!!!! I demanded an Endo, who put him back on the insulin drip. ACK!!!

Then, for two days Dad sat. Without a feeding tube. They were waiting for.....I dont know what the hell they were waiting for! The GI doc I guess. So for two days Dad sat without feeding. Without pain meds. Mom and I re-positioned him in between his every few minutes of waking from the pain. Did I mention he STILL is not him? Still not Dad. He is a confused person with Psychosis. In and out of medicated consciousness. The psychosis. The lack of continual sleep. I want my Dad back.

The meeting plan was earlier in the day was for the staff to work on a day/night routine. At this point, the simple things mattered. Open his blinds and wash his face every morning. Turn on the TV, DISCONTINUE "anxiety" meds. STOP giving morphine. Have Physical Therapy come in TWICE A DAY as they are supposed to, so they can work his deconditioned body. Thats all we asked. Simple things can help bring him out of such horrible Psychosis, if they just TRIED. We dont care if he's too weak. DO NOT WALK AWAY FROM HIM!!! WORK HIM, and dont give up. TALK him out of his confusion the way WE do!!! And so, the CCU director agreed to all our requests.

GI came in. We discussed the "simple" Gtube placement for feeding. It is done with a scope, bed side, with "twilight" sedation. He assured us it was no big deal, he's done a billion on someone in Dads condition, even others that have a dialysis catheter. 4 hours after the "simple" Gtube placement, Dad was pleading in pain. His stomach. We had no choice but to give him morphine and sedation. It was THAT bad. Another step backwards having to give more meds. Being a Dialysis patient, Dad also doesnt metabolize meds the way normal people do. What a freaking mess.

The next morning they informed us Dad's labs had tripled to toxic levels and needed emergent hemodialysis (after we had been doing his regular dialysis for days!) and they would have to put back in the Hemo catheter into his neck area. It had to be done. (maybe his labs tripled because the Gtube placement, abd pain!??) UM....and now his stomach is distended. CT was ordered. Hemodialysis makes him PHYSICALLY drained and also plays part in the Pshycosis from rapidly changing chemical and fluid balances!-Sigh- This was the least of our worries at this point.

During Hemodialysis Dad had to be RE INTUBATED!! FOR THE 3rd TIME!!!! His BP and respirations dropped during Hemodialysis. Another huge step back!

I wont go into details. We are planning on getting an attorney. Something went VERY wrong when the GI doctor placed that feeding tube. VERY WRONG, hence the abdominal pain. And now re-intubation!!??I can see bile draining into Dads Dialysis catheter, where it SHOULDN'T BE. They are trying to avoid us. Not answering my DIRECT questions. The night nurse confirmed my fears, but no one else would admit whats happening ALL DAY. I spoke with WENDY, THANK GOD she is an RN and helped me understand what we are facing. I also spoke with my mother in law who has been an RN her entire life. This was very, very bad.

I called the nurse supervisor. She avoided my questions and tried to distract me. I kept asking WHY they weren't calling a surgeon TONIGHT to fix what GI messed up. Because, she says, I'm wrong. I dont know what I'm talking about. And, his vitals are "stable" at this point, the doctor will access in morning. So Dad waited all night with an internal problem that should have been assessed 14 hours before.

We returned the next morning to WBC doubled to 48k. Dad needed abdominal surgery to save his life. Without it, there was no hope. They tried to talk us into surgery, but we knew his prognosis was grim either way. We opted not to. Then they encouraged us it might be ok. We agreed. Then the anesthesiologist, and surgeon came out to speak with us. They said it was highly unlikely Dad would survive the surgery. They wanted to make sure we understood that. They didnt want him to die on their table. That marks against THEM. .....they didnt have to say it. I knew. I couldnt understand why they were going back and forth, first telling us we should do surgery, then telling us it probably didnt matter either way!!! We were coping with loss before we even knew what to do. After horrid debating in our mind, we agreed to surgery. We didnt know what else to do.

Stopping Dialysis and keeping Dad sedated for comfort was an option. He would then die without pain. But even that could be slow while all his organs shut down. But, with surgery there was a chance. How can we make a decision to stop all efforts because of THEIR error? Their negligence in WAITING 14 hours for morning doctors to come in!!!!

Dad came out of surgery within 45min. His vitals remained stable the entire time. He's doing well, now almost 24 hours after surgery. All this for their mistake and negligence! These last 3 weeks have been beyond crazy.....

Just now....we spoke with the pulmonologist. They need to to another Bronchoscopy. He talked about Dad POSSIBLE NEVER COMING OFF A VENTILATOR. Meaning, he will live with a breathing tube! AND HEMODIALYSIS! AND A FEEDING TUBE!!! I'm done today, I cant believe how crazy this is. Its wrong. We thought heart surgery would help. This is anything but heart sugery. I want to go back.


Wendy said...

John 14:18 No, I will not abandon you or leave you as orphans in the storm-I will come to you.

Psalm 46:1 God is our refuge and strength, a very present help in times of trouble.

phonelady said...

Kelly I think you are so right in getting an attorney I would do so as well and would also see about moving your daddy to another hospital . If that is possible but you and your family do what is best and I will pray for you and your family .

Heidi / Jack's Pack said...

Oh Kelly, I am absolutely stunned and so very sorry for all of this! It IS beyond crazy! Your father is so very lucky to have you for his amazing daughter! Keep fighting for him!

Amy said...

Praying for you and your family Kelly! This is heartbreaking!

Anonymous said...

(((Kelly, I know how you feel))). After my daughter’s last heart surgery she passed away from complications the next week (5 ½ years ago at 5 years old). I wanted to “go back” … I wanted to go back and scoop her up and walk out of that hospital before they could do anything… I was so angry at “them”, angry b/c they couldn't save her, angry that they told me she had such great "odds" of making it, and in such a state of shock… But over time I have come to accept that what we did was the best decision at the time given her circumstances and her best chance. We had to give her that chance… She had “beat the odds” time and time again, but not that time.
At that point it’s out of your control and everything you did was in your dad’s best interest. You were an amazing advocate for him right until the end and have peace in knowing that he is free now.
Over time I have come to the point of feeling Zoë here w/ me and in my heart forever… I know I don’t personally know you other than the online world, but wanted to extend my deepest sympathies for you and your family…. *hugs*

~Tammy, Proud Mom to:
Zoë (forever 5), Zurik (5) dx’d w/ T1D at 21 months old and Payge (22 months old)