Sunday, January 31, 2010

Dads Memorial

This afternoon all of our family gathered to honor and remember Dad. We had a very casual family lunch at a local steak house. The room I reserved there was a quaint and quiet little place, it was perfect. Just what we wanted. My Dad was a very casual guy, and LOVED this steakhouse. Add in cherished family, ALL 4 of my sisters, some pictures of Dad, some flowers, and lots of love with talk of memories, and you get the ideal memorial, just how we wanted it to be.

Sorry Sistas! Not the best picture!! Top row from left...ME, sister Julie from Germany, Wendy (with baby tummy)Bottom left is Angie, Mom, then Melanie! I hope someone else got some better pictures!

Anyone that knows my Dad, knows his love of classic cars. Back in the days when my Dad was healthier and feeling well, he restored old cars during his free time. His pride and joy was his 1966 Ford Pickup Truck. My Dad gave my youngest sister (Melanie) his truck when he was no longer able to drive it because of his poor vision. The right thing to do today, was for Melanie to fire up that engine. Dads truck came right along with us to his memorial......we HAD to take some fun pictures with it....

So, everyone asks, how am I doing? I'm doing GREAT actually...I know, thats scary. I'm pretty emotionally void. I seem to be stuck in denial. Somehow, I still think my Dad is coming home. Somehow, I still think he is in that SICK hospital. Somehow, I think this is all a nightmare. CRAZY. I'm afraid of the days, weeks and months that lie ahead. I'm afraid of the pain that I know I will eventually feel. TERRIFIED, actually. I have never been close to anyone that has died....this is all surreal. Its a very empty feeling. I know its there, somewhere deep inside. A few silent tears do trickle out at random times, I must admit. But so far, I'm just waiting. Waiting for the day I wake up and just want to hide from this reality. I know that day may be fast approaching. But today, I can say to myself that my Dad is in a better place. No longer is he suffering. And, I can say that without alot of grief. Its a numbness though, I know.

My Mom? She is doing well as expected, but of course she has some very painful moments that pop in out of nowhere. My sister is here from Germany until later this week and staying with Mom, I know that is helping to fill the empty house.

Blood sugars? Mine SUCK. SUCK as in, stress REALLY effects your numbers!! I'm hanging out in the 200 range often lately. 250's even seen too often!! YUCK. Damn Diabetes. As if I dont feel bad enough!

Maddison has an Endo appointment Tuesday....I KNOW her A1c will be the worst EVER. Maybe her A1c will be the trigger of my grief for my Dad.....I'm guessing it might be.... The past month I haven't been able to give Maddison's numbers the attention I used to. I've been drained. I've spent every day and night lost in chaos at the hospital. Crazy eating times. Crazy eating habits. Checking BS less. Making less adjustments because I didnt have the energy.....sounds terrible, I know. But its the truth. Diabetes wasn't the main thing on my Dad was. And so, Maddison's A1c is surely going to stab me in the heart. Just another reminder of how my Dad lived with this fucked up disease for so long. I hate A1c's!!!

Oh well. An A1c is what it is I guess. Its time for me to get back on the Diabetes defeat track. Dads memorial today was perfect, thats all that matters right now.


On Saturday my Mom, myself, the girls and all my sisters went to lunch....courtesy of my D moms of course! Thank you all again for the special gift of time of spent with family.....

Saturday, January 30, 2010

Wednesday, January 27, 2010

Once again

Today I got another little package from Fedex....once again, D Moms from "everywhere" touched my heart and brought happiness to my aching heart.....

Once again, I was instantly uplifted knowing how blessed I am to have you all. From the bottom of my heart and from the depths of my soul....THANK YOU ALL so much for being supportive during this tragic time of loss! (AND ALWAYS!!)) I LOVE YOU GUYS!!! Pictures from our family dinner will surely follow! If you could only see how touched my Mom and Sisters are, they know us D Moms have something truely special.

Tuesday, January 26, 2010


We Wanted so much to keep you,
We watched you day by day
Until at last with breaking hearts
We saw you slip away
You wore a crown of patience,
As you struggled on and on
And the hands that rest forever,
Were the hands that were so strong.
God watched you while you suffered,
And he knew you had your share.
He tenderly closed your weary eyes,
And took you in his care.
Dear God, forgive a silent tear,
A silent wish that you were here.
Others are taken, yes, we know
But you were ours and we love you so.

Monday, January 25, 2010


Thats about it. I just feel empty. Except when I think of what my Mom must be feeling. I can't imagine her sorrow, her grief. Alone in a big empty house, knowing her husband is never coming home. I'm heart broken for my mom most of all.

We are all feeling such emptiness right now, and I think thats partly because Dad has really been gone for 4 weeks. For 4 weeks he's been away. Such a long time spent in that hospital. So many days were spent grieving before Dad even passed. Today, this still just doesn't feel real. It seems like he's still stuck in that hospital....reality just hasn't hit. How can you watch your father breathe his last breath and still be in denial? Empty doesn't feel good.

I woke up this morning over 300....that has NEVER happened. I thought emotional stress caught up with me, until I realized my site was on day 6. I simply forgot about me. Every finger poke today drew tears to my eye. Every correction I took made me nauseated inside. How can I carry on peaceful with this dreaded disease? Every finger poke. Every High. Every low.....reminds me of my Dads suffering. Diabetes took everything from my Dad, even though he did everything right. I can feel an emotional storm brewing inside.....I think I like empty better than what lies ahead.

Saturday, January 23, 2010

The greatest gift

I still haven't felt anything. Nothing. I watched my Father take his last breath, and I only had a few silent tears. UNTIL arriving home tonight.....

This is the greatest gift in all my life, my D moms. D moms from all over "blogville" sent me these flowers... they were at my door when I came home.... To lift me up with love and support during this time of tremendous grief. D Moms that I only know from blog land....from our local support group.....My D moms are the greatest gift anyone could EVER ask for. We all live this same crazy life that no one could ever understand until they are here themselves. From every ounce of my being....THANK YOU for lifting me up....THANK YOU for being something good that comes from Diabetes. ((HUGS TO YOU ALL!!))

Friday, January 22, 2010

We won the battle (graphic LONG post)

The past two weeks (of 4 weeks!) have blurred into one very long day. The days went so fast, even though they were spent in a desperate fight to stop my Dads suffering. We only wanted the truth. We wanted the Physicians to STOP dosing us with false hope. They were very manipulative. They thought they were pretty sly in avoiding questions. They THOUGHT we were like any other family that may not know any better, or that family that holds on unable to let go. They learned very quickly that they were wrong. We were not the quiet ones. We knew exactly what was going on. We fought to get Dad out of there to the very last day. Wednesday, we won this battle.

We FOUGHT the hospital to release my Dad to Hospice.... How sickening is that? We had to fight?!! Wednesday evening he was transferred. Immediate family gathered. Within 20 minutes Dad was situated in his room. Such a BEAUTIFUL place. Dad was dressed in clothing, no more hospital gown. Tape marks across his face that set his vent in place were cleaned. His hair was brushed. IV's and all tubes were removed. He looked like him again. Dad remained fully sedated the whole time, we didn't want him to die fighting in fear for his breath. Then, Hospice staff removed the ventilator and had us come to be with him.

Before we entered Dads room they told us he is very close to the end. My heart back tracked......I thought he would breathe for hours then end up unable to continue because he was too weak.....WHAT? I couldn't believe their words! He is very close to the end? How DARE that hospital fight us to keep him alive to this very day!! Minutes without a vent and he would pass!!?? They just told us TODAY he was getting better!! They told us he had a great chance!! LIES. LIES. LIES. I knew they were all lies, but now we were faced with the truth. My heart is angered by these last 2 weeks of lies and needless suffering!

We held his hand. We talked to him. It didn't seem real. It still doesn't, and I'm still emotionless. We hugged him tight as he struggled to breath. Within 10 minutes Dad took his last breath. Surrounded with love. Surrounded by his family. Away from the tubes. Away from that cold and deceitful hospital. Thats all that mattered in the end.

I feel I have to tell our story. I have to let others know how sickly wrong this whole thing turned out to be. Until the very last day, they refused to let their patient die. They didnt care if my Dad laid there as just a heart and lungs kept alive on a ventilator. They didnt care that his 160lb body turned to 140, then 120. They denied his muscle atrophy was a concern. They denied he was skin and bones. "The feeding tube would turn him around"......They just didnt want their patient to die. They have LIED to us for 2 weeks now. Saying his chances of recovery were very good. They tried guilt trips, asking why Dad would want heart surgery if he wasnt in it for "everything they've got" They said they see patients in worse condition recover all the time. LIES, all lies. What is worse that 30yrs of Diabetes eating you alive? Taking your eyesight, your kidneys, your ability to heal, your QUALITY OF LIFE? Dialysis alone, takes away quality of life. Dad has been able to do PD Dialysis at home for the last 7 years. 5 times a day. Now being faced with having to go back to Hemo dilaysis in a clinic for LIFE....that isnt quality of life. A feeding tube? A trach? Ohhhhhhh how they pushed us to switch from a ventilator to a Trach......One procedure turned into another. One "temporary" feeding tube went very wrong. And I know what they did. I know something went very wrong, and I know the doctors are all in cahoots covering that up. AS my Dad always said....."they will have their day"

Every day has felt like an eternity, yet the days went so fast. Each day brought more anguish as we tried to make a decision based on OUR reality....not their lies.
The past 2 weeks has been nothing but lies. Quintuple bypass, fine. My Dads heart was mended and strong. 2 and 3 days after surgery my Dad walked. He asked them to help him walk many times a day. His heart was mended, and all he wanted was to fight to get out of that hospital. He would have. I have no doubt in my mind. If only they listened from day 1. If only they didnt mess up that feeding tube!!

They SHOULD have checked his swallow as we requested. (after the heart attack dad had swallow issues) All they had to do was a simple GI consult and swallow test the days after his bypass to assure he wouldn't aspirate. They never did. So then came the Aspiration Pneumonia.....4 days back on a ventilator. He started to turn around. And then, the feeding tube placement.

I know what they did. I will not let this go. Their "simple" procedure went very wrong. I assume they punctured something when placing that "temporary" feeding tube. They let it go without care for almost 48 hours, even after I spoke with charge nurse that night about it. Because they KNEW Dad would die from that error alone. And so he sat with infection eating his abdominal cavity alive. While they made a plan to cover their asses.

Then came the 2nd abdominal surgery to save his life. We should have stopped there. But all they did, every day, was tell us he was getting better and they had a temporary fix for everything. IN denial, we trusted and believed them. This last week we knew this had to stop. If only THEY would stop.

Somehow, the cardiac surgeon became involved again once we told the nurses we had a Hospice plan. This wasn't anything cardiac related anymore. This was Pneumonia, a feeding tube, and abdominal surgery to fix THEIR error. This wasnt about Dads heart any longer. They fixed that, and ruined everything else.

The surgeon wanted to meet with us. All he wanted was HIS patient to survive. This was all about his reputation now, and covering up the hospitals lies. He told us how Dad could have a Trach put in for breathing long term. He was sure that would only be temporary as Dad regained strenght in rehab. That wasnt an option for us. But he pushed it. He told us how Dad would go to rehab for a "few weeks" and build his muscles again. We knew Dad already began to waste away after being bed ridden for 3 weeks. I think all I did for this last week was argue with doctors, asking them to STOP telling my mom how Dad "would likely" be okay. They just wouldnt stop.

The heart surgeon was rude and angry when we told him to STOP his lies, that we planned to move Dad to hospice. And, then, he did something that disgusts me to no end. He went to speak to the nurse about our Hospice plan. He ordered the nurse to stop sedation. Right then. While on a ventilator, most people remain sedated. Asshole doctor discontinued Dads sedation right then and there. He did it to SPITE US. So we would see Dad suffering. Dad woke up struggling within minutes. Struggling with a vent down his throat. With his arms restrained. In pain.

We FOUGHT to get new orders for sedation. Dad wasnt able to move to Hospice that day, sedation should have remained until he had somewhere to go!! We demanded they call that asshole doctor back to the floor to resume sedation orders. Minutes later he was back with a smirk on his face. I kid you not, that son of a bitch had a smirk on his face and told us "he must have misunderstood our plan" Thank GOD Sedation was turned back on, and Dad remained comfortable. It was this moment that we were in a panicked rush to end this craziness NOW. AS much as we tried to think we were the crazy ones making up all this chaos in our own was very clear now. They would do ANYTHING to keep my dad alive for their own need to cover their asses from their error. To keep the surgeons reputation.

Hospice day Wednesday came. Everyone knew our plan. A Physican needed to sign off to transfer my Dad to Hospice. The nurse decreased sedation so we could talk to my Dad. So we could tell him we wanted him off that vent. So we could tell him we would get him out of there. TO somewhere more comfortable. Anywhere but there. He knew he couldnt breath on his own. He didnt know any of the other gory details. He didnt know about the feeding tube or his body condition. He had NO IDEA of their medical error. We would never tell him that. We let him know that to honor his wishes, we would not continue this if it meant he was dependant on hemodialysis and a breathing machine. He agreed it was time for us to let go. We told him we love him. We told him we are sorry, endlessly. We told him how much we love him and how we cherished him as our father/husband. I told him I would take care of Mom. We hugged him. We held his hand tight. And then, they turned back up the sedation so he could remain comfortable and away from fear of what was coming. That was the last time for eternity, that my Dad looked into my eyes.

What happened next was the LAST straw for me playing nice. I couldn't argue nicely with these people anymore. The Hospitalist came to speak with us we thought, about discharging to Hospice. As soon as that doctor opened his mouth, I knew it was the same old deceitful conversation coming. He started with...."we need to talk about options" and it was then that I flew off the handle. I stood up and told him to stop. I told him we were there to talk about Hospice, and if he wasn't, then he needed to leave. He smirked at me and focused on my Mom. He continued talking about how my Dad was "getting better" and that he suddenly was showing progress. I raised my voice for him to STOP. I told him my Dad is going to Hospice, there aren't any options. I asked him three times to stop. Repeatedly, he talked right past me. I moved closer to him and demanded he leave. He refused to. So, I opened the door and SCREAMED for him to GET OUT. So, he did. Adrenaline is a funny thing. Messing with family that is heartbroken and being told lie after lie is asking for trouble. Covering up your medical error and keeping a person alive when they have no chance is SICK.

I walked out. I had to, or I would have tracked him down and spit in his face. Really, I would have. How dare he pull at my moms heart strings and tell my mother lies when my Dad lay there dependant on machines, with his skeletal bones showing through his sheets!!?? How DARE THEY?!! Somehow, I was sitting in the waiting room again. Trying to stop myself from hyperventilating in disgust and anger. I didn't even realize my sister was right outside Dad's room with my mom, trying to STOP this Doctor from asking my Dad personally what he wanted. This doctor wanted to speak with my Mom privately. We werent going to let that happen. They wouldnt stop!!! My sister was calm (a little loud) in telling this doctor my Dad would never even want to live on Hemodialysis. A feeding tube and a Tracheotomy was not an option. He told my sister to leave. So she did, and he still called security.

The waiting room doors flew open. When they closed, my sister lost it. I can't blame her. If anyone had gone through all this deceit watching their loved one suffer they would lose it just the same. My sister was screaming that this place was "SICK". They treat my Dad like a "lab rat" and everyone should get their family OUT of there. She was screaming that my Dad is a person...not just a heart and lungs to be kept alive in deceit. I told my uncle to get my mother OUT of there....away from that doctor. And so he did. My sister and I went outside to gain our composure. We knew my Dad could hear us fighting for him. Fighting to get him OUT of there. I'm sure he is proud. I know he is.

And so, here I am emotionless. I can't believe that on Dec 27th my Dad came out of heart surgery strong and ready to get home. Even being his prior condition...after that heart surgery he was strong!! He walked with every ounce of strength he had. Even after 30 years of Diabetes that had taken his kidneys. His eyes. His ability to walk well. He was strong. And then the hospital screwed up. There error killed my father. I'm emotionaless because I know we did the right thing. All I could have asked for was to get him out of there. To Hospice. To anywhere but there. Now he is without pain. Without illness. With Peace, and thats all that matters.

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.

Wednesday, January 13, 2010


Short on time, I'm stealing the GREATEST NEWS EVER from Amy at Diabetesmine......


Read it my friends....BELIEVE's so close. I'm already signed up!

Tuesday, January 12, 2010


390 is all it took tonight to send me into a total meltdown. ***Disclaimer*** I love my husband dearly. He takes fabulous care of Maddison although I dont always agree with how he does things, or what he feeds her.****

Its not that hard to do. If you feed an unknown, unpredictable meal you recheck blood sugar in the 2nd AND 3rd hour to make sure Maddison isnt sky high or risking a severe low. Its really not that hard. You just do it. No excuses. Well, he didnt. After spending yet another ENTIRELY FRUSTRATING DAY in CCU, I came home before dinner to Maddison's blood sugar reading of 390. She was never re-checked after that unknown lunch, and she likely sat around 390 for TOO MANY hours. Thats all it took. The rage, the helplessness, the frustration came spewing out. And so, I went for a drive knowing I cant lose it over "just a meter reading."

Its not really that 390. But yet, it is. That 390 hurts my child. It hurts every part of her body. Her eyes. Her heart. Her kidneys. It HURTS her, and its NOT okay. Yet these numbers happen. You get a little "lazy" with managing Diabetes and it HURTS. Its so not fair. Its not the 390......its whats happening in CCU. Its crazy. What started as a Quintuple Bypass, is now anything but.

Dad is back to having ICU PSYCHOSIS, worse today than yesterday. Every good day brings multiple bad days. I feel like I just cant watch this anymore. We shouldnt have to fight this hard for good care. And its not that Dad is getting "bad" care....its just that no one is understanding. Each nurse starts the day new. They dont know about yesterday. They dont know about last week. They dont know about 2 weeks ago. They only read the chart from the last day or so. No one understands that Dad has chronic back pain. All he needs is to be re-positioned hourly to help the pain. But all they do is push Morphine. Mixed with Percocet. That causes confusion. Then he cant sleep. Which means the cycle continues. Dad hasnt slept in days. So then he gets anxious and confused. So they push anti-anxiety meds. They keep him more awake. Then he's suddenly headed towards Psychosis. They give Halidol....other anti-psychotics. They make it worse. He ends up restrained and in worse condition than before. The next day is useless. He is too weak. He cant stand straight. Which means he cant walk. No walking means he gets weaker. Its a vicious cycle. I cant watch this anymore. No one listens. All they do is blame HIM for not "trying" and blame us for his aspiration. (LONG STORY)

My mom and I finally called a meeting AGAIN today. This time with his case manager. She had gone home for the day. Tomorrow at 9am we meet. Another day without progress. Another day set back. No one could ever understand how it feels to leave that hospital tonight. Dad is restrained. He's half there, then out. Another day he is taken from us. Another day spent confused in a state of alternating Psychosis. HOW did we end up here again!!?? Listening to him scream for an attorney. Listening to him plead with us to get him out of there. Knowing we can't. Feeling totally helpless. I pray to God he sleeps tonight. I pray he is comforted and tomorrow is a better day. Thats all I can do, and its killing me.

390. It wasn't the 390 that set me off. Yet it was. Its not about the 390, yet it is. Every finger poke. Every high. Every low. Reminds me of where my Dad is today. It infuriates me. It scares me. I can't sleep at night.....

Lost in Psychosis this evening, Dad ripped out his IV and feeding tube. Because the feeding tube was lost, the nurse turned off his Insulin Drip. Turned it OFF. A note was posted to his door and the curtain drawn. NO ONE TO ENTER THE ROOM. Dad needs to sleep and not be awakened. No breathing treatment. No labs drawn. Nothing. 4 hours they want him to remain totally undisturbed. And then I mom said the nurse turned OFF the insulin drip. OFF? No insulin going into his TYPE 1 BODY!!?? For 4 hours? I had Mom call the nurse back and INFORM THAT DAD IS TYPE 1 NOT TYPE 2. The nurse said "oh, ok, I wasn't aware of that."

We have been fighting for these people to listen. Its been 2 weeks today. And they dont listen. We have had meetings with each doctor. We had a meeting with the Nursing Supervisor. And yet they still blame. They still have no idea that insulin cannot be turned OFF for 4 hours. I'm disgusted. I'm discouraged. I'm angry.

390.....390 sucks. 390 hurts. 390 does nothing but remind me that Diabetes is SO MUCH MORE than a number. 390 happens. Sometimes ALOT. It makes me want to scream. It hurts my heart, today more than ever.

Monday, January 11, 2010


Finally a few good days in CCU! Saturday after coming off the vent Dad did great. We were pretty emotional having him back for the first time since surgery on December 29th! Sunday was an even better day. Today was good, Dad walked alot, but he is very tired and weak from spending so much time on the ventilator, and a total of 15 days in bed! Today he has some confusion, nothing compared to the ICU "Psychosis" though. Despite having a feeding tube, Dad has lost almost 20lbs and is SO skinny, a tiny 140lbs. We are just happy to FINALLY be moving forward. Thats all we can ask for. :)

I FINALLY have a sense of normalcy back! After spending a couple hours with Dad this morning in CCU I went to work for a few hours. I stopped back in to see Dad after work and then left the hospital early tonight to watch Hannah's Volleyball practice and start dinner afterwards. Ohhhhhhh.....the simple things in life make me SO happy. FINALLY moving forward :)

Saturday, January 9, 2010

Off the vent!

Happy tears! Dad was strong enough to come off the vent this morning! He has lost his voice, so is whispering alot. Here comes the onery Dad we have missed for all these days!! He is very mentally aware despite being on morphine for back pain. Today is an AWESOME DAY!!

Thank you all for your love and continued prayers!!Hoping we only move forward from here! Onery or not, we are ready!

Friday, January 8, 2010


Somehow, the last 10 days have blended into one. This morning started with the "new normal" trip to CCU to check on my Dad. I planned to go to work today (no work = no pay) but today was Dialysis day AND they planned to wean Dad off the ventilator. Work wasn't happening.

It all happened so fast. One minute Dad was nodding yes and no to our questions, he was less sedated. The next minute they reduced the oxygen flow. 10 minutes later an ABG was drawn to determine if we move forward. Good to go.

I swear, I was like the energizer bunny. After 10 days waiting for progress and a step forward, I knew today was the day. Dad would come off the vent and be HIMSELF for the first time since surgery. I sent text messages for all my sisters to COME NOW. We all needed to be here for this. I could have hopped up and down the CCU floor telling everyone today was the day. I wanted to. I felt it. I was sure today was the day.

I munched on my apple in the waiting room like a starving child from Indonesia. My energy and excitement (nerves) were too much. The ABG came back pretty good, so they turned off the oxygen flow on the vent.

Dad was too weak. His vitals all stood steady although oxygen was none. He ended up needing to have the vent turned back up after a few minutes. His lungs just werent ready. We were SO close. I feel like I lied to him. This morning I kept asking him "are you ready?" "Do you feel strong?" We explained to Dad how they would ease him off the vent. In his eyes he was ready. But physically he wasn't. Such a disappointment. Sedation was turned back up, to get him through another night of ventilator breathing. There he went. We were so close. Tomorrow we try again.

Wendy came to visit me today at the hospital. Wendy knows I've been losing my ground. As disappointed as I was this morning, I ended up revived and "happy" to the bottom of my being. Just because of a visit from a dear friend. Someone who cares. Someone who listens, someone who is there. Wendy got to talk with my family. She learned alot about us. She listened. She shared. It was uplifting to be in normal conversation once again after so many days being trapped in CCU chaos. I couldnt have made it through todays disappointment without her.

Beth Stopped by as planned tonight. Ms Lori my neighbor did too. All to lift me up in spirit. Amen to great friends! I am blessed to have so many friends that watch out for me. Each one knew I've been heading towards the end of my rope. Each one stepped up and took me in at my lowest point. For tomorrow, I feel I can handle anything that comes my way. Tomorrow is Dialysis day. Another day to attempt to remove Dads ventilator. AS down as I have been the past TOO MANY days, I'm ready for tomorrow. I hope and pray Dad is too.

Happy memories-All about Goldens

Anyone that knows our family knows about our love and devotion to Goldens. Our Goldens are as cherished as our children. They aren't just pets. They aren't just dogs. They are little furry children with their own personalities. We love them more than anyone could know, stinky or not.

From Chasing Numbers

Diego was the perfect puppy. He never chewed. He never had potty training issues. He ALWAYS listened. He has great manners, but like every golden he just wants attention ALL THE TIME. Then there is his tennis ball. He is OBSESSED with playing ball. He LOVES to swim. He is so loyal. When he escapes from the house he always comes right back. All the neighborhood knows where he belongs and watches to make sure he comes home. Diego is 8 now, I HATE to think that he is getting old. We love him SO MUCH!


Roxxie, Roxxie, Roxxie......oh my Roxxie. Where do I start? She's spunky. She has a TON of energy. She is my shadow. She follows me everywhere. EVERYWHERE. If I walk down the hall, she follows. If I climb in bed, she's right there beside me. If I go to the bathroom, she waits outside the door. LOYAL is her middle name. She listens the instant you call her name. All she wants to do is please you. If we play board games, the Goldens are right there in our face. They seriously want to play too. Roxxie likes to steal Joshs pillow the instant he leaves for work in the morning. She sleeps like a human in the bed! Roxxie is 3 now. Roxxie is SO FUNNY! We love Roxxie SO much.

On this day in 2008 Roxxie had 8 perfect puppies. The happy memories are with me today, despite the sadness we have been going through with my Dad. Those puppies were like gold to us. Each one had their own distinctive personality. I could tell each one apart, still can. Each perfect puppy went to perfect homes. We know where each one lives, and with who.

It was perfect timing, the JDRF Promise Ball was about to take place, right as the puppies were getting old enough to go to their new home. We donated 2 perfect puppies to the Promise Ball, each one raising $5,000 in the silent auction!!! All monies went to JDRF. What could be better than that?!!

JDRF puppy #1 went to a JDRF family that lives here in Phoenix! His name is Wilson. They say he likes to chill out in the jacuzzi. Just sitting there. The pool vaccum is his friend. He follows it all around the pool. I'm so proud to have given someone a cherished member of their family!!

JDRF puppy #2 is Claire. She lives on hundreds of acres in North Dakota. We have kept in touch, and the 3 kids in the family LOVE Claire!

Then there is "Roxie" who went to Kris' family. Kris is a part of our support group. Even though they have moved out of state, Kris' family is still a part of our support group. If you have ever followed Kris' blog, you've heard about Roxie. Something tells me Roxie is living up to mommy Roxxie's name!

OSCAR....Ohhhhh....Oscar. We suckered in a family around the block. Every day when the puppies were outside to play, Lori and Robert were walking by with their furry friend Goo. Funny the timing of it all :) Something told me they needed another furry friend to religiously walk every day! They took home Oscar...Hannah's favorite puppy. He is BIG, red and b-e-a-u-t-i-f-u-l. Funny thing, Lori saw my pump and pulled out hers! Lori was dx'd at the age of 9. Sorry Lori, I have to say it.....Lori has had Diabetes for 40 years!!!!!!!! AND, she is the picture of health!!!I must say, she looks SO MUCH younger than she is! Lori and I have become GREAT friends through Oscar. Through Diabetes. Through our Golden playdates with a glass (or two) of wine. Does it get any better than that?!!

Harlee.....Harlee was an angel. We kept Harlee as our own. He was the most gentle GIANT boy ever. Lori and I call him a giant polar bear. Harlee liked to eat laundry. Actually, he ate everything. If you didnt have him with you every single second, I guarantee you he was eating something. His hunger for laundry caught up to him. (It wasnt like there is laundry laying all around my house!!) At 11 months he had a bowel obstruction. We did the surgery. He never got better. It was too late. Harlee went to doggy heaven at the young age of 11 months. Guilt still haunts me, and we still miss him dearly.

Rocky....Rocky went to live with a SUPER nice young girl who just completed her Physician Assistant degree. We used to meet for doggie park days. We used to babysitt Rocky when she traveled. They have since moved away, but we get pictures often.

Snow and Neeko....Snow went to a family nearby. I called them every few months that first year. They LOVE her! When Harlee died I called them to make sure everything was still working out. I was hoping to have her back since Harlee was gone! NOPE! They LOVE her. I didnt ask for her back of course, but in my heart I was hoping we could have ONE of our puppies back! Neeko went to a family and it didnt work out. They stuck to their contract and called me right away. We took Neeko back in at the age of 6 months. I found a lady that recently lost 140lbs and her beloved pet died. She needed a walking buddy to continue her new healthier life style. Neeko was perfect for her. I get pictures often.

WE LOVE OUR GOLDEN PUPPIES!! Although they have gone to new homes we remember every detail about each one. Even today, on their 2nd doggy birthday.

Thursday, January 7, 2010

His eyes

This is your warning to stop now if you don't want to hear the details of this battle in my mind. I sit in this waiting room all day and think of all the things I want to write. Today I'm going to. I have the time. I feel so disconnected from whats going on. Disconnected from whats going on in my heart. His body. His eyes. I have to get it out. I can't keep it inside any longer.

One second I'm sure Dad wont be able to recall any of this when it passes. The next I'm not so sure. One second I'm sure he can't feel, I'm sure he's in another peaceful land. The next second I see the scowl on his face. He feels pain. He's sedated. What does sedated mean anyway? Can he hear us? Can he feel us beside him? Does he feel us stroking his hand? Does he want us to leave so we don't see him this way? Does he think we can make this stop? Does he think we are keeping him alive when we need to let him go? I see the tape across his face holding the breathing tubes in place. They make me want to cry. Yet, we stay strong. We walk away with hope. Then we return to check on him later. He's looking at us. His head follows us as we walk by.....

Isn't he too conscious right now? They need to turn the sedation back up. I talked quietly to Dad, trying to tell him the breathing tubes are helping him recover from the Pneumonia. Just a set back I said. He shook his head no. I had to look away. I can't look at his eyes. He started moving his feet more and more. He wiggled his hands as I held on tight, and he tried to pull me to look at him. To look at his eyes. I know he was trying to make me look at his eyes. So he could tell me this has to stop. But we are stuck. I don't think he knows this can still turn out ok. I know he thinks we are hanging on to a hopeless situation. We aren't. This can still turn out ok. I could feel that he was angry with me. Maybe he wasn't.....but I felt that he was. He was telling me to make this stop. I know he was.

I had to leave the room. I told his nurse he needs more sedation. He shouldn't be able to feel like that. He shouldn't be able to plead with us to make this stop. I know thats what he was doing. Dad should be unaware that breathing tube is in. Today he was very well aware. Its haunting my mind. He doesn't know whats going on. And then he does. Suddenly, if even for seconds. Its eating me alive. There isn't any more comfort. I dont feel comfortable with any of this. His eyes say it all.

I can't stop wondering how he feels. Does he feel too much? Is he scared? Does he need us to talk to him, or does that make it worse? Is he freaking out quietly because he cant communicate? Is he going crazy in his mind? I know he wants to die. I know he does. If he can feel and he can understand, I know he's praying to end this now. I know it. I know he is feeling hopeless, if he is able to feel. I know it. He's never been someone to give up, yet I know for years he has been done with this life. The Dialysis. The aches and pains. The Neuropathy. The back pain. The blindness. So much has been taken from him. That isnt quality of life, because he isnt happy. He isnt happy because he can't work. He's been disabled since 2002. And he just sits. In a quiet house. With his 3 loyal k9 companions. And waits until Mom comes home from work after working 12 hours a day. He waits. Waits to feel better. Waits watching the clock for his next dialysis "exchange." And thats about it. Now this. I know how he's feeling, if god forbid he can feel right now....I know how he's feeling. I can see it more than ever, in his eyes.

My dad has never been a social guy. Mom did all the shopping and errands. Dad just worked. Worked crazy long days, and that was it. He didnt go to movies. He never went to the mall. He didnt visit family, unless they came to him. Thats just the way he was. He was either away at work or working around the house. He never sat still. Until kidney failure set in. That was in 2002. It all happened so fast.

Its 4pm, Ive been sitting in this waiting room for 8 hours. We go in to check on Dad every hour. I feel guilty leaving the room, and I feel guilty entering the room. I cant win. I dont know if I should stay here or go. I always stay. I can't leave. I miss my kids. I've been in this waiting room 14 hours a day since December 28th. Did I mention I miss my kids? I have to be here for my mom. I have to be here to see whats coming. I'm the one that NEEDS to ask questions. I have to know all the details. I'm tired of waiting. I'm tired of going backwards and not seeing any progress. I'm tired of seeing my Dad suffer, wondering if he's suffering. I'm tired of seeing his eyes like this. I'm tired of not knowing what I should do. I'm tired of feeling helpless.

Sitting here all day is torture. Its even more torture to walk away and feel bad, worried and scared to do so. Being away from here is worse than being here. I'm all discombobulated. I haven't lost hope. I will not lose hope. It just hurts.


Today is Hemodialysis day again. Every 2 days. Peritoneal is done 5 times per day, keeping blood more "level" without spikes of toxic levels. We have been pleading for Dad to go back to peritoneal, so his levels stay safe, not spiking to toxic and then back down again. (Hello! Thats what makes Hemo so invasive!!) All they keep saying is that all patients that are this critical stay on Hemo until they can resume the Peritoneal process themselves. ACK! Whats the sense in keeping him on Hemo if the levels spike to toxic amounts between days?!! He isnt fluid overloaded, so the concern isnt removing fluids...its just cleaning the blood!! So, I talked with the Dialysis tech. She agrees Peritoneal should resume to stop levels from spiking. I told the nurse if we need to run Dads Peritoneal 5 times a day ourselves, then we will do it. I'm waiting to talk to the Nephrologist. I just dont get it. We understand Hemo is needed. But they could also add Peritoneal to keep him level in between the days. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Imagine if we only gave insulin for food every other day. Thats kinda the same as Hemo. Its the same in many ways. Spikes. Drops. Not the best option. Drains everything you have.

Again. Hemodialyis again today. That makes me sick. Every Hemo day dad goes downhill. Last Hemo day on Sunday Dads heart rate dropped and he ended up intubated. Maybe it wasnt the Hemo. Maybe it was the failing condition of his lungs. Maybe it just WAS. But I'm sure Hemo didnt help the situation. I'm not going to work today because its a Hemo day. I got my necessary stuff at work done yesterday. Today work will wait. And I will sit here and remain hopeful. Thats all I can do. The pulmonary doc wants to try and wean Dad off the vent today. He is on 40% forced air. I guess the possibility of weaning him back to breathing is a positive. Just staying positive!


I had an interesting conversation the other day with Maddison. We haven't used the CGM since Xmas vacation. Maddison's numbers have been pretty darn good for the most part. Sometimes you just dont have it in you to fix a few problem areas. You just wait for them to settle. So, the school nurse was asking if Maddison will go back to the CGM this week. I told her Maddison needs a break from it. The red sore areas from the insertion of the sensor and tape rawness need to disappear entirely before I bring back the CGM. I asked Maddison how she feels about the CGM. She said its an unfair "PUNISHMENT"...................YIKES. Let me clue you in....all Maddison's LOWS in school that haunted me for weeks and didnt make any sense....were faked. She finally confessed. Trust me, the nurse is aware she wasnt watching Maddison correctly. So, Maddison sees the CGM as punishment for faking her lows. I promised her its not punishment. Its to keep her safe. To keep her honest. Now I dont know what to do with the CGM. Perhaps use it for myself. Right now the CGM isnt necessary. Maddison knows if "lows" come back she is back on the CGM. CGM as a "punishment"????? Not what I expected to hear. Not what I expected Maddison to feel. Damn Diabetes!

Wednesday, January 6, 2010

No words

I can't get the words out that I feel inside. This has been the most exhausting and emotional 9 days anyone could imagine. To see someone you love suffering is the worst. I just dont know. My Dad is expected to be on the Vent for several days, which means he is still sedated. I just want my ornery Dad back. All they keep saying is how "severe" his pneumonia is. All I keep thinking is, I dont want to hear the S word. Sepsis. We can fight this Pneumonia. If anyone can, its my Dad. Regardless of all the other issues. I'm pleading at this point that S doesnt take over. I'm numb. I'm terrified. I can't believe someone could live through such a surgery only to go downhill. And suffer for days on end.......

Tuesday, January 5, 2010


This roller coaster has no end in sight. Every step forward leaves us taking 3 steps back. I came to the hospital this morning so hopeful. I was anxious to see Dad still awake and more aware. He wasn't. They did the bronchoscopy before I made it here, which meant Dad was sedated. I was so angry at myself for not making it before he went back under. The chest xray shows bilateral severe pneumonia and the Bronch removed enormous amounts of puss. Gross, I know, but thats reality.

I called a meeting with the nursing supervisor after his day nurse told us Dad needs "to try harder." (when he was trying to cough up stuff earlier) We feel they dont understand his mental status is keeping him from "trying." The nursing supervisor assured us they understand the severity of his ALOC. She assured us that they will let us know ahead of time (if possible) if there is nothing more they can do. I think thats what we have been needing to hear. Or least what I've been needing to hear. I need to see things coming. I've been thinking they aren't telling us his prognosis is grim. I feel better knowing we arent in the dark. I guess this is just a long road.

I wanted the nursing supervisor to know it was a kick in the face when Dad's shitty nurse said he isnt trying. I hope she talks to that evil nurse and lets her know that was the most insensitive comment she EVER could have said at this moment. Somehow, we feel so much better just having called a meeting to talk about whats going on. We no longer feel in the dark.

Mom and I almost stood our ground against Hemodialysis today. Somehow, they talked us back into believing Hemo isnt the root of all evil right now. I wish I stood my ground and insisted we go peritoneal!!! An hour after Hemo started Dad went downhill. His heart rate dropped and he stopped breathing. He has been re-intubated and stabilized.

The need to re-intubate isn't the end of the road. They assure us. Its the start of a new battle. Knowing this is just a setback (not a grim prognosis) we are stronger mentally and prepared to continue the fight. Minute by minute.

Monday, January 4, 2010

Sunday, worst day yet

I couldn't even bring myself to post about my Dad yesterday. I fell asleep before I made it to bed! TOTALLY DRAINED. My mom, sisters and I have spent 12-14 hours a day for the last 6 days beside my Dad in the hospital. Waiting for him to come back. Dad still hasn't past his Psychosis. It still isn't him. 6 long days seeing someone that isn't him. Its indescribable.

It hurts me to hear how everyone says that so and so had heart surgery too. Did so and so have Diabetes for 30 years? Were they in grave condition before surgery? Are they Dialysis dependant? No, they weren't. Thats why this is so incredibly TERRIBLE, HERATBREAKING AND HORRIBLE for my Dad. This wasn't "JUST" a quintuple bypass on an otherwise healthy person. This is kidney failure!! Do people realize what Dialysis is like? Do they realize blood is taken from your body and cleaned because your kidneys dont work? Do they have any idea how difficult this surgery is for high risk patients like my Dad?

Its a vicious cycle. Dad starts gaining awareness, and then its time for Hemodialysis again. And then he's taken from us. Hemodialysis takes so much from him. He stares blankly ahead. His eyes are dry, red and empty. When he musters the strength to talk, he is confused. Then he falls back into unconsciousness. He reaches out for my mom. He's stuck in a battle of his own mind. We dont know if he feels any pain, or can remember us being there. Alot of times he can't cooperate with the nurses because he can't get out from this psychosis. He can't follow directions most times. He can't concentrate long enough... Or can he but he can't pull himself out? He does somehow, get up to walk when its time. He is so strong. He pushes and pushes, even though Hemodialysis on top of this surgery and infection has drained every ounce of strength within him.

Sunday, was the worst day yet. The doctors had him on some type of medication to "help" with his Psychosis. It could have been that. Or, maybe it was the Dialysis that pushed him even farther into an unknown land. We aren't quite sure. Whatever it was, it took over my dads body. Yesterday Dad was pretty much "unconscious" all day. No responses. Until, he began having nightmares, or maybe it was hallucinations. Its better if I dont say what his dreaming was about. Lets just say, its everyone's worst nightmare. But Dad thought it was really happening. He became more and more "awake" and was screaming for it to stop. He was kicking and fighting. In his mind this was real. He had to be restrained, tied to his bed. And then he finally settled after what seemed like an eternity.

The night nurse came in and bathed my dad, then he had his walk. A few steps anyway. He couldn't hold himself up, weak from the Dialysis day. After his walk and bath, Dad came back. He was aware. The first thing he said to my mom was that he "just had the worst dream ever in his life. "He looked SO scared. He was still confused as to if it was real or not. He pleaded with us to make it stop. We comforted him by assuring him it was a dream and we were there all along. We promised him we would stop the medication they gave him for the psychosis. Now I pray its not the Dialysis! Tomorrow is Dialysis day again!

We talked to Dad as much as we could last night until he fell asleep, which was maybe 20 minutes, I think thats the longest we have had him "aware" since surgery. Those walks kill me to watch, even though they are so necessary. They take everything he has. 5 long days of waiting for Dad to show some signs of "awareness" was the hardest thing ever imaginable. Our days have been spent minute by minute. Hoping, praying and pleading that this insanity stops. Most patients are home after 4 days they say. Dad is on Day 6, and is still suffering from this "confusion"!!! Dad thinks he is in "the basement," and wonders why he just had his "3rd kidney transplant." Oh, the horrible things we have seen and heard this week. Our hearts are just crumbled. We prepared ourselves for all the possibilities of this high risk surgery, but we NEVER could have been prepared for this.

Good was 80% better than yesterday. Dad is there, not himself by any means, but he is aware. He's still confused alot, and can only talk a minute or two before falling "asleep" but he is understanding and asking questions. I could go on and on about all the horrifying things we went through yesterday watching my Dad in his deepest Psychosis. But I wont. I will look ahead and not back. I will stop asking why. I will stop feeling like I can't do anything right to help him. I will stop feeling all those horrible feelings from yesterday, and move forward. Today was a better day and thats all that matters.

I'm so hopeful for tomorrow. I pray the Psychosis has passed. Unfortunately, not only is it a Dialysis day again, but Dad will also be having a Bronchoscopy. Going under again. Dad needs this Bronchoscopy to clear his lungs they say. I dont really agree with that, but what do I know. The Doctor doing the procedure is actually a Dr that I worked for a few years ago. I despise her. She is cold and uncaring. She has the worst bed side manner ever. She is arrogant. ICK!

Tomorrow......will be a better day.

Saturday, January 2, 2010

Post surgery day 4

Today Dad is much more mentally there, but we are fearing his Hemodialysis again tomorrow will put him right back where he was with the Delirium. He is on anti-anxiety meds which help him rest. Now that he is eating (SF pudding, applesauce, cream of wheat) his BS spikes close to the 300's and all they do is correct the high. Then he eats another meal. I dont get why they dont prevent the high. He is only on Lantus, why dont they cover the food to keep his BS in tight range and help healing!!?? I requested they call an Endo consult, but really, thats the least of our worries right now I'm sure. (The nurse did put in a call to the Endo though)

Dad's WBC just came back even more elevated than yesterday, 28K. He has an infection. Most likely pneumonia. He still has his main chest tube in, and its removing LOTS of fluids. Please pray that his infection is controlled. Infection has been our biggest concern for this surgery. I cant believe thats what we are actually facing right now.

Dad is comfortable, says he has minimal pain.....but also has repeated himself all day saying he can't do this anymore. Then he fades in and out of consciousness, waking up mentally out of it and saying something about killing himself. I'm sure thats all the meds and his altered mental state, but it still hurts to hear it.

Friday, January 1, 2010


Wow. How things can change so quickly. Long story, and a painful day cut short, Dads mental state took a major turn for the worse. One word....Hemodialysis. Dads Hemodialysis that was started early this morning put him in a state of DELIRIUM because removing too much fluid and/or removing fluid too rapidly basically causes shock to your entire body. All your chemical balances are thrown off. DELIRIUM is a very scary thing to watch.

All morning Dads nurse was assuring me he was just confused and it was normal after anesthesia. Yep, I know that.....but THIS was not normal and his mental status changed out of know where!! I tried stressing to her a million times that yesterday Dads mental state was good. He was silly, but mentally he was there. This was clearly delirium, not confusion. I guess she finally got tired of me being "the squeaky wheel" because they ended up doing a CT scan. It came back fine, which reinforced that Dialysis is likely the cause of the new onset delirium.

I asked her if they would draw labs to make sure Dialysis didnt emergently screw something up. Of course her response was that all his vitals are fine. I understand that, but.....I'm sorry, once again I snapped. She just kept using the word "confused" and it pissed me off. There is a big difference between confusion and new onset delirium!!!Battle cut short, she called the doctor and Dad had STAT labs back within half an hour.

Labs were all fine. As fine as they get for a Dialysis patient anyway. That was GREAT news. Hemodialysis is the explanation for the delirium. What a HORRID thing Hemo dialysis is, especially after a MAJOR surgery!!!!

Did I mention my Dad didnt sleep all day because the nurse wouldnt give him morphine or percocet? Dad said he didnt have any pain, so she didnt give him any. I understand that.....but after SO MANY hours of us trying to keep him in bed and away from pulling out tubes in a delirium state, SOMETHING would have helped him sleep. The man couldnt stop moving for goodness sakes! She didnt care. She told us we were encouraging his "confusion" by hoovering over him... Funny, I remember silently sitting in the chair beside him, holding his hand and ignoring his pleas while my heart was breaking. I knew we couldnt talk sense into him. I didnt even try. All we could do was ignore the crazy questions and keep his hands away from his tubes and keep him from climbing out of bed. We gave reassurance when he needed it most. He could have rested his whacked out mind if she would have relaxed him with some morphine. She chose not to because he was just "confused." I think she needs a big slap in the face.

Anyway. I'm in love with my Dads night nurse. (the same one dad pleaded was so mean) He spent an hour talking to us tonight about lab results, going over his progress notes and encouraging us to speak up if we feel something isnt right. He has been Dads night nurse for the last 3 days so he agreed Dad was WAY off from yesterday. He is very concerned, as are we. You can bet the hospital will be getting a letter of appreciation in his name from me. This man is AWESOME and he CARES more than any nurse ever has. If I wasn't so fried in my brain at the moment I would tell you all about him. Unfortunately, today was a major emotional overhaul and I cant even add 2+2. Trust me, this man is an angel.....

Tomorrow is a new day. Hopefully todays meanie dumb dumb nurse will not be back. Hemodialysis is only done every 3 days so hopefully Dads imbalances and shock to his system will be settling down in between. Now I just pray that he can resume his old way of Dialysis when Monday comes so that this delirium doesnt continue or happen again. I miss my real Dad. Delirium is a crazy thing.

Strange stuff

Yesterday my Dad became an entirely different person. The good thing was he wanted to walk, and he walked many times just because he wanted too, not because he had to. All vitals are great. He didnt have any pain. Then, came someone we just dont know.

Its like Dad has Alzheimer's. He seemed very clear in his mind, he didnt seem drugged up. But he said silly things as though he was trying to be a comedian. Honestly, he was totally funny and it was hard not to laugh at his voice. He sounds like a young child that needs explanation for everything. He seemed very naive....reminds me of the movie Rain Man! As he began talking more and more, it was more apparent that he was someone else. The way he was responding to his nurses, to us.....was mystifying. He was like a broken child that had been through trauma and didnt know what else to say but to keep talking. About everything. It was such a relief, but strange at the same time because he wasnt the person we know. He sure was funny, in a sad kind of way.

This morning when I came in to see him he said "Kelly?" Then proceeded to plead with me to tell his nurse he cant see. Complete 360 from yesterday. No more funny stuff. He looks desperately sad and confused. His dialysis nurse is in with him, so I could only stay for a minute. He said Dad CAN see, he knows we are holding up 2 fingers. I told Dad he CAN see, you can see two fingers. He replied with "OK" and then silenced. Within a minute he was telling me "Please tell the nurse I cant see"

I'm sitting here devastated. I knew there would be good days and harder days, I just expected the confusion to get better. We were SO happy with his silliness and comfort yesterday. Today, I'm afraid of what the day holds.