MONICA SMITH AT MDACC 9/14/11

MONICA SMITH AT MDACC 9/14/11
MONICA SMITH AT MDACC 9/14/11

Sunday, December 12, 2010

WHOOPS!

Friday ended up being a whole bit exciting that I would have dreamed. Here is where prayers from Joe's Army held me up to the day's challenges and protected Joe.

Friday was busy with tests at MDACC so that Dr. Romaguera can determine where Joe's disease is now and whether Joe can be released on Monday out of his direct care at MDACC. The first visit  today was on the 10th floor for the Bone Marrow Aspiration and Biopsy without sedation. I do not know how Joe can stand getting this done without being sedated. The techs do give Joe a shot of Novocaine but imagine something like a wine opener going through the bone of your hip to get a sample of the bone marrow. Joe says it is more pressure than hurting but I say Joe is one mighty brave man. I am a chicken and I admit it. Period. Exclamation mark! Joe's appointment was at 11:30 AM and the waiting area was jammed packed with patients. By 12:30 PM he was called back where they took a sample out of each side of his hip. Good Grief. Joe walked out smiling. God bless his heart!

Next stop was for X-Rays at 1:20 PM where he was called exactly on time. My word! Who would have ever thought that! Not me, for sure! In the meantime, Dr. Winton's assistant called from Emory stating that MDACC was not going to release his bone marrow biopsy slides from pathology without Joe's written consent. Jeez, I thought I had done that last week at the Medical Record Release Department when Joe was an inpatient. I found out that the Pathology Release form must also be signed and it is located in a totally different area on the ground floor at MDACC. Joe had to be at the Mays Clinic at 2:20pm to get the prep for the CT scan scheduled at 4:20. I figured that he would get prep and we would head back over to MDACC to get the forms signed between appointments. The Mays Clinic is located across the street and down the block from the Main MDACC and is connected  by well-appreciated cross walk that go over two streets. The crossway connected MDACC, Faculty Center, Rotary House, Parking Garage and the Mays Clinic. It is a great convenience they designed since patients could avoid inclement weather and traffic. It also prevents traffic jams from people trying to cross the streets. The crossway is wide enough to have a bunch golf carts transporting people from one end to the other. Alas, we did not know that on our first walk from MDACC third floor over to the May's Clinic second floor. It is really long. I mean really, really long. Joe was finally called to get the prep to drink which amounted to about a half gallon of milky yucky stuff that they try to make taste decently. With Joe's prep drink we hopped onto one of the golf carts to take us back over to MDACC. With some assistance that were basically hints, we found the Pathology Record Department. The clerk who manned the area talked so softly that it was impossible for me to hear him even when I asked him to speak up. We got the forms. I completed them. Joe signed them and we gave them back to the soft spoken young man. Joe and I hopped back on the golf cart to get back over to the Mays Clinic to wait till he was called for the exam.

The Mays Clinic does not feel like a hospital or clinic at all with the carpet, marble, crome, artwork, and a huge atrium. There are several parks on top of roofs with lovely table, chairs, umbrellas and nice landscape design. It is new and wonderful. While we were waiting, I was able to do a little bit more Christmas shopping at the May's Clinic Gift Shop where they have some cool unique gifts type items. Joe was still waiting in the more comfortable waiting area for the CT exam. He was called back for the exam exactly at 4:20 PM which was the time for the appointment. The CT Clinic has an electronic board where one can see where in the process a patient is. I liked that. Joe told the prep got nastier in the back area where they give a Barium Enema. I will spare you the details and let you use your imagination. Joe finally walked carefully out of the CT area about 6:10PM. We were both grateful that the golf carts were still in operation although there was only one at that hour but that worked out fine. Joe stated that he needed to get to a men's room because of the effects of the enema.

Joe requested that I bring in dinner to the hotel since he needed to stay near the bathroom where he took a bunch of trips. He was tired from all the running around all day long so I drove over to Kenny & Ziggy's Deli around the block. I got us the chicken salad sandwich on rye that we love along with the best potato salad, fresh french fries (they had them after all) and a dessert for Joe which was monstrous. Joe was happy and grateful when I arrived back to the room and Max's nose was going wild from the fragrant smells of good food. Joe ate it with glee and ate about a quarter of the New York Cheesecake. As I was fiddling with my laptop having a email conversation with Larry Lewis, who also has Mantle Cell Lymphoma who lives in Virginia, Joe fell into a deep sleep sitting up then all hell broke loose at 8:50PM EST.

Joe had gone into a Grand Mal seizure which is quite violent and would scare the heck out of most people. This time it scare me big time since it was so unexpected with him taking Keppra for his night time seizure disorder. He had taken Dilantin for over 20 years to control his seizures and about twice a year he would have a break through seizure at night. The MDACC pharmacist called in a neurologist while Joe was in the hospital the second time for chemo.The pharmacist had a concern about the dilantin and the chemo interacting badly together. I had just canceled Joe's December appointment with the Emory neurologist for a second opinion 30 minutes before the neurologist showed up in Joe's hospital room since we would still be in Houston. It was decided to have Joe come off the Dilantin gradually then put him on Keppra at the same time. Joe had been totally off the Dilantin for over 10 days and just on Keppra to control his seizures.

At first I was in shock. At home I would have let Joe come out of the seizure on his own then give him four to five dilantin pills once he was somewhat coherent which would take about an hour to happen. I went around in circles for a few moments with my mind rushing like crazy. Do I let him come out of it on his own? Should I call the hospital? Who could I talk to? Should I call 911? I moved the coffee table away from him and he laid on his side totally out of it. As I dialed 911, Joe stopped breathing and turned a frightening color of blue. I thought that I had lost him. 911 stayed on the line and told him what to do and  I had already done what I knew to do or not do. 911 and I stopped our conversation and I called the front desk to make them aware that an ambulance would be coming so it would not take them by surprise. They arrived about 9:10PM and Joe's color was almost back but he was still unconscious. They took his vital signs. I gave them a briefing on Joe's status and a list of all his medications and that he needed to be taken to the MDA ER at the Main Building. They put an IV on him. He started to come to some senses where I could change his messed up shirt which they suggested. He was not able to communicate properly. When I asked him where he was, he was he was home. I asked him where was home. He stated "Everywhere." Joe has some sense of humor but unfortunately, he was serious. He started again not be to be to talk clearly so they took him out to the ambulance. I told them that I would meet them at MDA ER. I arrived 20 minutes before they did since they worked on Joe in the ambulance and get him securely fastened. By the time they wheeled Joe into the ER, he was his normal self and acting normally once again. He kept apologizing to me that he was sorry that it happened. Of course, it was not his fault and he appreciated me looking after him. I was relieved to have him tell him that I did the right thing. He arrived into the ER about 10:15 and the RN's started working on him right away. Since Joe had his brain scanned during the CT earlier that afternoon, they were able to get it reviewed by a neurologist right away. There was no growths or bleeding in the brain but from the CT scan, it was determined that he had sinusitis. I kept telling the staff about Joe's persistent cough and now we had another reason for it. It was also decided to raise his Keppra by 250mg and that he had been taking 1000 mg twice a day. We left the ER with a prescription for antibiotics and 250mg pills for added Keppra. When we arrived back in the hotel, and I looked at the Keppra and it turned out the pills were in 500mg form not the 1000mg that I thought he was taking thus he had been taking half of the dosage needed. I felt responsible for that but I am only human. Joe has so many pills that it looks like a handful of M&M's of all sizes. Joe was so glad to be back in our own space and that he had seen enough of MDACC for one day. I agreed.

I knew from experience that Joe would be resting most of the day today. When he has a seizure, he is so wiped out the next day that he sleeps most of the time. Today was no different. He stayed in bed till 3:30pm. He wanted to get out of the studio so we got his prescription filled at CVS and a gift from God, CVS was able to contact the Internist that I had seen locally a month ago and got the okay to refill the hydrocodeine for my arm pain. I take it only when it gets bad and I can not sleep. Thank you, God.

We went to the Edwards Cinema off of Katy Freeway to see "Burlesque." Joe hated it and said it was the worse acting that Cher ever has done. She was a bit plastic but Christina's singing and dancing was terrific and I loved the gaudy costumes. The actor who played the bartender and her roommate was a hunk so it was pleasant to watch him.

After the movie we were both hungry so we went to the Ninfa's on Post Oak Blvd near our hotel. What a surprise! It had a wonderful colorful new place with a Southwestern atmosphere with great service. The food was above my expectations. I had the tender moist perfectly cooked Pork Carnitas with fresh sliced riped tasty avocado, dash of sour cream, salsa, refried beans and Spanish rice. Joe had chili rellenos which he adored. Next door to the Ninfa's was the Dessert Gallery which we decided to get a cup of coffee and dessert. Joe had a slice of chocolate mousse cake and I had a slice of cheesecake topped with a layer of strawberry mousse. Yes, it was amazing and yes, we left half of each.

We are now back in the studio watching TV. Joe took a nap till Saturday Night Live came on as I typed the blog update. It has been hard to adjust to the TV times since prime time and everything is on an hour earlier here. I do not think that I could ever get adjusted to it. I changed Joe's dressing around his PICC line which is a detailed sterile procedure to prevent a dreaded infection.

So far so good, Joe is OK tonight. I pray that there are no other episodes.

Let me state this, that in the darkness of Friday night,  there were good. What a blessing it was that Joe had the seizure Friday night and not on the road back to Atlanta! What a blessing it was that we found out at the ER that Joe had sinusitis infection where they would give him antibiotics to treat it before it turned into something deadly! What a blessing to know that the amount of Keppra that he was taking was wrong to control his seizures. It was not because it was not working! Thank God that he gave me wisdom to call 911 and not panic! I am so very grateful. Here is another event where the prayers of Joe's Prayer Army have been listened by God Almighty. Thank you God for letting Joe still be here with us.

Tomorrow we will attend Lakewood Church at their 11AM service to hear Joel Osteen preach since we are curious to see him in action with his members. I will let you know what it was like tomorrow night in my blog.

Peace with all of you. My prayers to all those who are sick to be healed. My prayers to all those who are scared or lonely find help. My prayers to all those who are missing their loved ones. My prayers to our leaders and our military people. My prayers for Joe to get into complete remission and be safe of infections and all else. May those who are estranged from their loved ones find wholeness and forgiveness.

Ciao!

2 comments:

  1. My prayers to you, my friend. I am so relieved it all came out OK. I imagine you are exhausted, too.

    Lynn from EPC

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  2. Joe is lucky to have you by his side Bonnie. I am so glad that all worked out well. You have so much for which to be grateful. I watched Joel this morning and his sermon was perfect for you.God is good.

    Hugs,

    Mary
    There will be a cure soon

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