Tom (Nucsubman) RC w/neobladder - UPDATE 7/3

First off I would like to thank all of you for all your support and prayers. Please keep them coming as we are finally getting the beginning of good news as we are still in the Holy Cross Hospital in Ft. Lauderdale fighting a urinary and bloodstream VRE bacterial infection after his RC w/neobladder replacment at the University of Miami Hospital on June 15, 2009.

Tom was moved from Cardio Vascular ICU to Intermediate Care last Sunday night. He moved again yesterday into a regular room. He also got up and walked the length of the hallway. Every time he tries to go out of the room, there is always an explanation that he is allowed as he is on contact isolation only. This isolation is a silver lining in this mess. This means he is still in a private room.

Following are his last doctor reports from today:

Internist - said Tom was doing very well. All of his "numbers" that needed to go up went up and all of his "numbers" that needed to go down came down. He asked him if he remembered coming into the hospital on the 24th of June. Tom replied that he did not. The doctor said that was probably just as well because he said that if he had gone another 15 minutes without medical help he would most likely have died. It is very scary to know he came that close to death. Thank God for that blood pressure cuff. I will never be without one again after any illness or surgery. He said that he will be working on getting Tom cleared so he can get out of the hospital in 3 - 5 days.

Infection Disease Physician - Today was the 3rd day of a second set of cultures that were taken and sent off this week for both blood and urine. They came back negative for 3 days in a row. This means clinically that Tom is free of the infection that caused this hospital visit. He will have to remain on the antibiotics for about 14 more days. This doctor says he should be able to release Tom to go home around Monday. A home health nurse will come daily to administer the IV antibiotics. This will not be the same home health agency that we had after leaving Miami.

Gastrointestinal Physician - Since I last wrote an entry we have been battling yet another problem. Last Monday when the internist came in he said Tom was showing signs of further problems. They felt that some of his daily numbers were moving into a bad range in his digestive system. This was being brought on by the 3-4 antibiotics Tom was on for five days previous. The internist called in a gastrointestinal physician. The GI doctor had further testing done and it showed that Tom's gallbladder had thrown debris into his common bile duct that goes between his liver and pancreas. This caused a mild case of Pancreatitis. His white blood count had gone up to double what it should be. His bilirubin levels signaling possible liver problems started moving upward.

Mysteriously and thankfully, Tom showed no symptoms of this condition. It can be very painful and upsetting to his whole digestive system. The GI doctor ordered a follow up MRI and this confirmed he had this condition. He wanted to do an ERCP. This procedure is a technique in which the gallbladder, bile ducts, and pancreatic ducts are injected with x-ray dye and x-ray pictures are taken via a scope inserted from his mouth downward to the two foot mark in his small intestine. If these x-ray pictures showed stones or obstructions, the doctor then was going to clean out the debris and do a small incision in the common bile duct to help in case this debris deposit (or sludge as it is called) happened again.

The ERCP was set for yesterday morning. When Tom's labs came back yesterday, his bilirubin levels started to drop along with the white blood count. After much research at sites like the Cleveland Clinic and other highly respected medical facilities and discussion with our other doctors and family members, Tom and I jointly decided that since all his white blood count and bilirubin levels were dropping along with the fact that he had no symptoms of further infection we did not want the procedure done.

Tom has gone through enough and has turned the corner and wanted to work toward getting ready to be released. The one major thing that really concerned me was the fact that I had to tell the GI doctor that the procedure would have to be put off for at least 5 days because Tom was on two different blood thinners. It was a disturbing thing that he was going to do this procedure and had evidently not checked what medication Tom was taking. Had I not researched other health care organizations standard procedures and precautions and spoken to him, Tom would have had the procedure yesterday morning. Never trust that a physician has done his homework. Check and recheck to make sure all bases are covered. If you are too ill to do this yourself have another family member or friend do so for you.

Urologist – came in on Thursday. Tom had not seen an urologist since the day after he came into the hospital. All the doctors were understandably concerned with the infection. I also knew that Tom’s bladder/prostate surgery and the follow-up processes needed to take place for this surgery. I approached the Infectious Disease doctor. We spoke about the need to have Tom’s stents removed from his kidneys along with the temporary ostomy bag as they could harbor bacteria. Even removing the stents can cause infection sometimes. The fact that Tom was already on heavy antibiotics could only be helpful in fighting this possible issue.

The only connection we had at Holy Cross with a urologist was my email correspondence with Dr. Soloway (his surgeon) in Miami. His local urologists were out of town on vacation. Tom asked for a urologist to come in. An urologist that was covering for our local urologist (a dead ringer for George Costanzia from the Jerry Seinfeld Show) came in like a whirlwind today and removed the stents and the ostomy and catheter bag. He wrote an order for Tom to be able to take an honest to goodness shower. The last shower Tom had was Monday morning, June 15th. I had been bathing him daily and washing his hair. Even though this was cleansing, there is nothing like that first shower. He feels like a new person.

Thomas, our son came in two days ago. I am so glad I ask him to delay his visit to Florida after his Dad’s surgery. I instinctively knew that we would need him later rather than when we first got back from Miami. He is “disinfecting” the apartment today from stem to stern. We don’t want Tom to go back home and pick up any of the bacteria he deposited after coming home from the University of Miami hospital.

Tom’s room is on the top floor of Holy Cross Hospital looking east toward the ocean. We plan to spend tomorrow, the Fourth of July, watching the fireworks together from his room. We should probably be able to see Deerfield, Pompano and Lauderdale-By-The-Sea all at the same time as they set them off over the ocean. Tom is hoping to celebrate his personal “independence” sometime, between Monday and Wednesday.

Wish us luck,
Sandra



Thank you again for caring.

Sandra