August 2001 -- The beginning

 

This is my family

Paul our 21 year old son, Me, Sandy, and Michael who is all smiles

Life as normal ~~ August 15, 2001

 6 a.m. I get up to start my day leaving Michael snoozing in bed till 8 a.m., when I will need him to help me with the day care children. He gets up guzzles coffee and comes into help me feed our little charges breakfast. We play with the children, do crafts, read to them, and go about our morning of day care duties. Somewhere after noon we lay our charges down for nap, and Michael retires for his pre work nap at one o clock. At 2:30 p.m. he gets up and readies himself for his work day. At 3 p.m. when one of my helpers either Andrea or Jill arrive, Michael leaves for work, and my helper and I get the children up from nap for their snack. Michael works swing shift as a Security guard at a local warehouse complex. He calls home to check in during his shift and goes about his job as usual walking and driving rounds, logging in vehicles to the property and basically keeping watch. He arrives home around 11:30 p.m., munches some and turns on the television to wind down. This particular night before going to bed he let me know that he did not empty the dishwasher because he got caught up in a really good movie. "I am also working overtime tomorrow night, so let me sleep in o.k.?" No problem I groggily tell him. I can let you sleep till noon, as tomorrow will be a light day, not many kids scheduled for my family day care. And I will do the dishes in the morning, no big deal.

 

August 16, 2001 ~~ The rude awakening

I decided Michael could take an early nap today instead of sleeping in, instead of noon, I went into wake him up at 8:30 a.m. . When I went in though I found him chalk white, sweating, his eyes were glazed over and half open, his breathing was very irregular, the look on his face frightened me. I thought he had had a stroke, or was dying. Michael's dog, a small pug we had rescued from an abusive home, Willie was at his head licking out his mouth, keeping Michael's air way clear of debris. The dog was pawing at him and whining. I tried to bring Michael out of it by calling his name, but he was totally unconscious. I left Willie with Michael as he was doing a good job of keeping him alive, and went to the kitchen to call an ambulance. I feel Willie saved Michael from choking to death on his own vomit before I could find him. This little dog who was so abused when we got him that he bit everyone he was so afraid, he had twelve cigarette burns on his little body, broken ribs, and gobbled food like he would never be fed again. This little dog who people said we should "put to sleep", had saved Michael's life.

As I passed the toy room full of children I told them, Michael was very sick and the ambulance was coming, I needed the big ones to please play nice with the little ones and stay put. I returned to lock the dogs up so the rescue workers could do their job. Willie was very upset at me taking him away from Michael, he howled and screamed and bit at me wanting to protect his "dad". 

The American Responders along with local paramedics were here within minutes and moved right to work. They were wonderful, in spite of the fact that as Michael started to come out of the seizure he was swinging at everyone. At one point he hit me in the face, and even hit the female rescue worker. They still treated him with kindness trying to calm him down. Having a house full of day care children I sent Michael to the hospital alone with the ambulance people. 

I stood in the door way watching the ambulance pull away, a day care parent approached our door with her child in arms. Are you ok? she asked hesitantly. I am, I giggled nervously, not so sure about Michael though. Should I take Alex home she inquired. No, I have kids I am not leaving for the hospital as there is nothing I could do there except wait. So go ahead and let me add him to my collection *giggle*, and we will do our best. She handed me her child, I took Alex hugged him close, and assured his Mom it was all going to be ok and not to get upset. After all getting upset helps no one. She left for work and I closed the door, wondering what now.

I called our son Paul, who is away at a near by college (8 miles from home) and told him his Dad was very ill. "I need you to came home at once and help me."

After I called Paul I went into talk to my day care children about what they had just seen. They we wonderful and full of knowledge. I did not have to tell them, they told me. I had baked a cake yesterday they had seen that half of it was gone and determined Michael had eaten it. They explained that was what had made him sick. One of the little girls piped up with "I ate too much cake once my tummy hurt and I ate strawberries too, the strawberries made me throw up, then I felt better." They all agreed Michael should have eaten strawberries so he would have thrown up and would not have gotten so sick now. My kids, wonderful, insightful, and my strength in adversity.

Paul was at our door within the hour. I left for the hospital. After I left Paul called our friend 18 year old Andrea and her cousin Jill. They both rushed over to encourage Paul, and help with the children. We are so lucky to have these wonderful young people in our lives.

I got to Salinas Valley Memorial Hospital within the hour to find Michael confused and dazed, but alive and conscious. They were doing an x ray to see if his lungs were clear of debris (they were), then they did a CAT scan on his head. shortly after we were told the scan revealed he had had a "bleed" in the right side of his brain. The bleed in turn caused a seizure. Now we need to find out why did his brain bleed? More test will determine that.

There was a big clock on the wall staring down at us clicking off the minutes. Michael noticed it around 1 p.m. and started worrying that it was after noon, and I had not eaten. I had to laugh at him laying there hooked up and beeping worrying about me. He tried telling the nurses I needed to eat. They told him I could go to the cafeteria a few halls over, I told him it was not that big a deal, I wanted to stay by his side, I could eat later. I called home to check on the kids. Andrea and Paul had it all under control, and were getting the little ones ready for their nap. Michael asked for the phone, I handed it to him and he told Paul to go to Jack in the box and get me something to eat he was worried about me. Paul said no problem as soon as the kids were down for nap he would go get me a sandwich and bring it to me. I then called Michael's work place and called him in sick, it had just not dawned on me to do it before this. They were very concerned and assured me that it was ok, not to worry just get hime better. Paul showed up in the ER they let him back sandwich in hand. As I ate Paul visited his Dad. The site of Father and son in this strange environment gave me chills. After I ate and Paul had eased his mind that Michael was being taken care of he left to bring Andrea food too. Michael and I stayed behind, waiting.............

August 16, 2001 ~~ ICU Level II

Around 4 p.m. Michael is transferred to the ICU Level II. It's true, he really is sick. The ER staff brought Michael over to the ICU Level II, transfer him to a bed and scurry off, while the monitor clicks and IV drips quietly into his arm. "A nurse will be in soon" is the last thing they said to us. At 4:30 p.m. I leave needing to be home when the parents come to get their children, so I can let them know what is happening. As I leave, I let the nurses at the station know I am leaving, and he is in their hands. 

When I got home Rebecca and her sister had already left so I was not able to tell their Dad of our day. Paul had not explained much, just that his Dad was sick. I learned later Rebecca had explained it all to her family. Her explanation "Michael ate too much cake and the Aliens came and got him". I have to admit I do love that one.

At 8 p.m. I get a phone call from Michael, he is hungry and thirsty. They never brought him anything to eat, he still has not seen a nurse, and he needs to use the bathroom. I call the nurses station let them know he needs assistance, and ask if he can have food. I am told no problem one of them will go to his room and see what he needs. Yes food is fine. So off Paul and I go to bring dad something to eat. Paul and I go over to Foster Freeze get sundaes as that was what Michael is hungry for. When we arrive at the hospital room, he still needs to use the bathroom. I disconnect his monitor, and take Michael and his IV to the bathroom. When he is in the bathroom, I look for his call bell. I find it under his bed, I dig it out and attach it to the side rail. I get Michael back to bed, hook him back up, and the three of us sit there eating ice cream in our new land of never never. the journey has begun. 

 

 

August 17, 2001 ~~ Hospital reality

I am headed back at the hospital at 8 a.m. to be with Michael. I feel safe leaving our day care children in the capable hands of Paul and Andrea. Again theses two come through for us.

I get to the hospital finding Michael needing to go to the bathroom, but having no way to tell anyone. I disconnect him from the monitors and walk him to the bathroom. While he is in the bathroom I find his call bell (again under the bed) and retie it to his side rail. I go out to a linen cart in the hallway get linens and change his bed. I go into the bathroom, bathe him, and change his gown. I then help him back to bed and reconnect him to his monitors. Later a nurse comes in unaware I have done any of these things. I let him know that I already took Michael to the bathroom, and cleaned him up for the day. He told Michael he was lucky to have a wife like me (no joke). I then requested a water bottle and basin as Michael does not seem to have any in his room. The nurse is surprised and goes to get us these items. He reassures us this does not happen, it was only because Michael was sent up from ER at the change of shift, that he got lost in the shuffle of the ICU Level II. I guess that also explains why he was not given a dinner or a breakfast tray of food also.

We are told Doctor Wahl has ordered an M.R.I. to be done this morning. At 10 a.m. the technician comes in, wraps Michael in a blanket and takes him away to the M.R.I. machine. I sat alone in his room, my own head spinning, wondering what does the future hold.

We have no health insurance so this is going to be interesting. As Michael lay helpless and sick in the ICU Level II, we got to meet Mel a financial counselor from the finance office. He came in at noon to tell us how much we owed, four thousand five hundred dollars at this point. He let us know that he had checked, and knew that we do not qualify for medi Cal, and he knows we do not have "means". Feeling like a pathetic loser, I tried to explain to Mel that despite our lack of "means" I would find a way to pay our bill, as I have never not paid my way in my life. He looks me in the eye and tells me we have a year to pay this debt off, or it will be sent to collections and suggest we try to get a loan to cover it. Mel also informed us we should not have come to Salinas Valley Memorial Hospital, we should have gone to Natividad Medical Center, the county hospital. Mel slapped a paper on the over bed table with information about where we are to go in the future, he made it clear we were not welcone at SVMH. We would never ever dream of coming back to Salinas Valley Memorial Hospital. Before leaving the room, Mel tells Michael the longer he is in that bed, and every test they run, will only drive this bill higher. With that information delivered, he left the room. I comforted Michael who on top of being ill, felt like a true loser. I told him not to worry about the money I would handle it, but he wants to go home NOW before he runs up any more debt.

At 5 p.m. this evening Doctor Wahl came in and announced Michael has a small tumor in the right front lobe of his brain, no big deal we are told. A doctor in their office can do a fine needle biopsy but he is sure it's nothing.

Now that we know what is wrong, Michael really wants to go home, he is agitated and wants to see his dog Willie. Our family doctor Adelheid Ebenhoech arranges for me to bring the dog up to the ICU Level II to see Michael, in the hopes of calming him. While I am gone getting Willie Doctor Ebenhoech comes in to check on Michael. She is a general practitioner and very in tune with her patients and their needs. 

When I arrived home to retrieve the dog my neighbor Mark came over to my car as I was getting out asking how Michael was... At that moment I think it struck me how bad this was and I dissolved into his arms sobbing "he has a brain tumor it is very very bad"... I cried so hard I could hardly move or breathe, he brought me to his home where his wife Michelle, one of our other neighbor Mrs. Tinely and Mark hugged me and comforted me. I told them how I knew they thought it was bad because they were letting me bring the dog to the ICU Level II. I was sure Michael would be dead soon, the dog was a kindness the doctors could give him. My neighbors comforted me, and helped me pull it together so I could bring Michael his dog. Community is an important thing. Do you know your neighbors? you may like them. Mine are great.

The visit with the dog fails to calm Michael Doctor Ebenhoech signs his release papers so he can go home at 9 p.m., the nurse came in give us a prescription for a drug called dilantin so that Michael will not have any more seizures and they sent us home. I needed to find a pharmacy that was open to get the prescription filled on the way home.

 

Michael and his dog Willie

 

August 22, 2001 ~~ State aide

I went down to Financial counseling unit at Natividad Medical Center to apply for state aide insurance today. Doctor Ebenhoech set it up for us cutting through much of the red tape. She knew we needed financial help and in the true essence of her profession looked after ALL her patients needs.

This is a new and frightening world that I never thought I would walk through. The office is full of people, all with that look of desperation and fear that I now wear. I sign in at the clip board and find a seat among my peers. The receptionist calls my name, I spring up, go to the desk, explain I am here for Michael not Sandra, she questions "why" Michael is not here on his own behalf and I explain he is not capable, she asks he supervisor if it is ok, Dr. Ebenhoech has already called ahead and cleared our way. I am handed papers and told to have a seat, to fill them out. I do as I am told, return the papers to the desk, and wait again.

At last I get in and see a worker. She walks me though the paper work, a confusing maze of questions, and rules. I get frustrated and cry often as my emotions are on hyper drive. The worker stays calm and fixed on the course at hand, she has to get me through this. Her calm annoys me, but one of us has to stay composed, and I am not managing that chore. I try to assure the worker "this is not me, I do not act this way" but I realize she only sees the crazy evil ogre that had possessed my body before her. How could she believe me? I tell her once I get the ogre back in the cave I will come back to see her. We get all the details hammered out, I walk out of the office with the coveted MIA card. Michael is officially a Medically Indignant Adult. We can now get him treatment.

 

August 28, 2001 ~~ God and state aide sends us to U.C.S.F.

 

We were sent to San Francisco for treatment as Natividad Medical Center (the local county hospital) does not have a Neurology department, and Salinas Valley Memorial Hospital and Doctor Wahl do not accept MIA as a form of payment.

Once at U.C.S.F. medical center, some 200 miles away, We meet the brilliant brain surgeon Doctor Michael W. McDermott, MD, FRCSC and his assistant Gina Goforth RN, NP who is a wonderfully helpful young woman. Immediately this doctor spots two tumors on the M.R.I. not just one. He tells us they are called hemorrhagic brain tumors. It was the tumor not Michael's brain that bleed. He also told us hemorrhagic tumors are almost always malignant, and so time is of the essence. At last we were being treated like Michael's life matters to the specialist of the medical profession. 

A fine needle biopsy is out of the question because if you cut these tumors they will bleed. The biopsy will entail brain surgery. We are told Doctor McDermott will make a small incision, and open a 2 inch square of skull to get to the tumor. He will then take a small piece to biopsy while being able to see that there is no bleeding around the tumor before he closes Michael's skull up. The doctor scheduled a surgical biopsy for September 6th. 

The doctors and staff at this hospital/school are amazing. Michael is getting state of the art treatment, and the medical staff have been kind and helpful. I am so thankful we were sent here. 

 

August 30, 2001 ~~ Back to the Financial counseling unit at Natividad Medical center

On MIA I have to go each month and qualify for benefits. So here I sit again, this time better prepared and less emotional. Today though the worker also has me apply for Medi Cal a more widely accepted state funded program. So after filling out and qualifying for the MIA, I go to Audra Powell and she walks me through the paper work for this program. It will take two months before we know if Michael qualifies for this program, But I walk out today with the life saving MIA card in my hot little hand. Michael still has a chance.

 

I start the "treatment binder"

I got a large zippered binder and started organizing Michael's medical life... I put everything we have done from our trip to the emergency room to our journey to U.C.S.F. for treatment. I put everything in this binder, including a calender, scratch paper and a pencil. We take "the binder" with us to every appointment so we know what drugs Michael is taking, their dosages, what treatments and test he has had, and what plans and appointments are upcoming. 

 

 

August 31, 2001 ~~ Ready test, here we go

Back to U.C.S.F. today. We leave the day care in the capable hands of Andrea, Jill and our son Paul. These young people are amazing, compassionate and our heroes.

We got to U.C.S.F. at 11 am today for Michael's pre-op tests. Coming from the small town of Salinas this city seems so BIG. This hospital HUGE. We have to wonder, how will we ever find our way. We went down a long hallway into a glass office. We are greeted by a very friendly receptionist who gives us a binder and sends us off to our next stop a room down the hall, admitting. This is really happening, there really is hope. A pleasant clerk calls us in, sign here, read this, sign again, she even asks "do you have any questions? anything I can help you with?" We are so dazed we only smile, thank her and say no we are o.k.... The binder is handed back and we are now instructed to go to room E106... We are greeted by a room full of people waiting like us clutching their blue binders. We tell the clerk we are here, take a seat and wait. Very soon we are sent to the notary to have her stamp placed on the "advanced directive" Michael has filled out, then sent back to the waiting area. Michael is whisked away for x rays, urine test, and the inevitable blood draw. We meet with the anesthesia student, she explains how Michael will be cared for during surgery, and what to expect afterwards. Students do the anesthesia under the supervision of their teachers. Like I tell the girl, "amateurs built the Ark... professionals built the Titanic" we have no worries. They measure Michael weigh him poke and prod him and after 6 hours the binder full, it is sent off to the surgeon, and we are sent home. Back in the car we hit the road for the two and a half hour ride back home, tired and spent, but feeling like we are being cared for by the best in the world.

 

Laughter among the rubble

Where does laughter come from? It helps to laugh as tears only cloud your vision and make it hard to read the fine print. In life you have to trust that higher power. You have to know that there is a plan. It is not for us to know the plan, just to trust that there is one. Everything in life is a lesson in living, our job is to learn the lessons. I have been thinking of what the lessons in this could be... I have identified a few and thought I would share them. There is more paperwork in the system than trees in the forest... When driving in the city it helps to think like a two year old, it's ALL mine... Doctors are getting younger... Courage is contagious... There are more people around us that love us than we could ever have realized... When things are out of our control it helps to take a deep breathe... Everyone wants to help, you just have to let them know how... Children always will be a sense of salvation and joy... Flowers brought to the door always make you smile... The Chinese food in San Francisco is better than in Salinas... Don't suffer the catastrophe before it happens... no matter what, children can always make you laugh... listen... sleep is imperative.

 


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