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Look Out For Murphy


mikev

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Murphy’s Law seems to be hanging over Bernie’s head like a black cloud, and if it wasn’t for bad news I wouldn’t have any.

 

Bernie’s Cranioplasty of September 22nd went about as lousy as it could. The best thing that happened was the fit of the prosthetic scull was perfect. Initially the surgery seemed to go as planned with Bernie only a few hours in the ICU after a couple of hours in recovery. The doctor said everything went well and Bernie should be able to go home in a couple of days. He couldn’t have been more wrong.

 

In the 5 days that followed Bernie went straight down hill. Recovery turned to survival. The 5th day after her surgery she could no longer move or waken. Even though the neuro person (pa), was making daily observations she was too stupid to see the decline. It was on that 5th day with the help of a nurse and one of the OT people we were able to attract enough attention to get a couple of neuro doctors to look at her. Bernie went immediately for a scan. It wasn’t too long after the scan that I was needed for a signature to approve an emergency surgery to remove the scull because of fluid pressure on the brain. My heart sank. How could this happen to my dear, sweet Bernadette.

 

The surgery was performed at 6 pm, the doctor came out at 9 pm to talk to our family. He told us it was fluid not blood. When I asked him what kind of fluid he said he wasn’t sure. I looked at him and asked if he sent any to the lab for diagnostics. He said no. I asked if it was CSF he said he didn’t think so. I asked “what do you know”. I was getting ticked by that time and my brother grabbed my arm and kind of reminded me to keep cool. I looked the doctor in the eye and told him that I was disappointed in the surgical results and I was also disappointed in him. He made no further comments.

 

As the days passed the follow up scans were ok, but Bernie was going seriously into respiratory distress. They even thought she might have a blood clot that moved to the lung. On October 4th Bernie was moved to the Medical ICU for treatment and observation. The respiratory distress required that Bernie be put on the ventilator. They did tests too numerous to mention. There were also indications she was bleeding somewhere, diagnosis was difficult because her existing kidney transplant wouldn’t allow the use of dye during scans. Her hemoglobin went from 8 to 6 overnight, 2 units of blood were given and the same thing happened the next night. In all, she received 6 units of blood in 8 days. She was also weaned off the vent for a couple of days , went back into distress and put back on the vent, then it was decided to do the tracheostomy in order to avoid any more stress to Bernie.

 

The blood issue was never really solved. Bernie has existing A-Typical Mylofibrosis which inhibits red cell production. That, along with emergency situation drug applications was implied as the probable cause of the rollercoaster hemoglobin numbers.

 

In closing this stage of the Saga, on October 20th my dear wife was transferred to a rehab hospital, unable to stand, walk, talk, eat, use the bathroom, or move any of her left side and very limited use of her right hand and arm, all of which she was doing before this set of surgeries. She also received a complimentary C-Diff infection. Bernie lays helpless with her neck in hyperextension and a tube in her throat. With the tube feeding she has gone to about 95 pounds.

 

Two days and you’ll be home, sure. I’m in the gutter.

 

 

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Mike: there is nothing I can say that will help you except that I am thinking and praying for you and Bernie every day. It never ceases to amaze me of the roller-coaster effect in health care. As a nurse it was so frustrating to get one issue resolved only to find two more. The more complex the patient, the more issues. Constantly on your toes and there were 20 patients to deal with. Take it one step at a time and I know you know this: get the infection under control, make sure her calorie count is boosted, hopefully she can tolerate a red blood cell booster like Epogen and then the Trach issue. Once the red blood cell issue is stable, the breathing issue should resolve. Then home and exercise, rehab. Please take care of yourself. You are her only advocate and you must be in good form to take this all on: diet, rest, exercise. As painful as this is, thank you so much for keeping us updated. A big hug and give Bernie a kisss for me tonight. Debbie

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Mike, I'm so sorry to hear of Bernies problems. I wish there was a magic wand I could wave to make it all good. She is a fighter. Please take care of yourself. I will continue to keep you both in my prayers. Thanks for taking the time to update us.

 

God bless. Mary Jo

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Mike, my magic wand is out of energy too, waved it too many times lately.

 

Picture us there, your friends here from the chat group and those who post positive thoughts and prayers. We are not exactly the white gown and halo brigade but we have your best interests at heart. We do know the suffering a caregiver goes through and have stood by the bedside of our loved one when hope was gone.

 

You need to be made of steel to go through this, that tough titanium version, which I am sure is what a carnut like yourself is made of.

 

(((hugs))) good buddy, from Sue.

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Mike

 

you and your bride in my thoughts and prayers. I pray for your strength & getting well deserved break from all this hospital chaos for both of you

 

hugs,

Asha

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Mike,

You and Bernie have lived a nightmare. C-diff is terrible. My neighbor got that and she was down to 74 pounds.

I wish that I could help you out.

I know that you will be busy watching out for Bernies interest.

I pray that you have the strength and stamina to keep on trudging ahead.

Please give Bernie a kiss from me.

Ruth

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mike i just wanted you to know that i am very sadden for bernie and for you mike if i could do any thing to ease your pain mike i would do it in a second mike i will pray for comfort to god for you and for burnie in hopes that benie will feel better and start to improve and i will pray for you mike in hoes that you will be comfort for you so that you don"t feel so in the gutter all the best to you mike and to burnie and may god bless you ,

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