Wow, its been a long time since I posted information about Bill and what is going on with his health. The reconstruction surgery that was scheduled for July 29th was called off 2 hours into the surgery, because an odd spot was found in the left temple area of Bill's face. We were in the hospital for 9 days waiting for the results to come back as to if it was active fungus or not. It was not active but that delayed reconstruction on his face. The doctors decided to increase the amount of anti fungal medicine that Bill would take and then we were told to wait for a couple of months.

Bill's reconstruction on his face was changed to July 29th because Dr. Hunt had a important cancer case that he had to deal with. It has just made Bill more nervous, but I was able to take care of some insurance issues.

Reconstruction of Bill's face

On Tuesday, May 28th 2013, Bill had an appointment with Dr. Hunt at the Huntsman Cancer Hospital and a date was set for the reconstruction surgery on Bill's face. The date is Monday, July 8th 2013. The surgery will be 10-12 hours long and he will be in the hospital for 6-10 days, then recovery at home. The bone, skin, muscle, and blood vessels will be taken from the bottom part of one of his legs. The bones in his face will be held together with titanium plates and screws. When Bill gets home he will walk with a cane for 2 weeks and then he will be able to do everything that he normally would do. Right now Bill can drink from a soda pop bottle (without the obturator) and can eat soft food with his obturator in, we still put most of his meds and food in his G-tube that goes right into his stomach. After the surgery and the flap is in his mouth, that is the new roof of his mouth is healed he will be able to take all his meds and soft food through his mouth and the G-tube will come out of his stomach. We will have to wait until the bone is completely healed (6-8 months) before Bill will get implanted teeth and then be able to eat his favorite food - hard or not. The obturator is like a retainer that fits somewhat in the hole that is in the roof of Bill's mouth. It helps him talk better. Dr. Rodney Andrus, here in St. George is the wonderful prosthodontic specialist that made the obturator.

As you can see, Bill did not pass away after 2 months. He kept getting better and stronger each day after leaving the hospital on April 25th, 2012. By November 2012, Dr. Horani, our Infectious Disease doctor here in St. George felt that Bill needed an MRI. After seeing that there was significant improvement from the MRI in April, he told us to contact Dr. Hunt about reconstruction.

Dr. Hunt was very surprised and happy when we made the appointment. Very few individuals survive having mucormycosis. The nurses, hospital staff and doctors on West 8 at LDS hospital were also very happy and surprised to see Bill alive and doing well.

Just catching everyone up on the Black family story. Bill was still having hyperbaric chamber treatments and Dr. Beninati added another fungal medicine (Posaconazole) in March to the big bad fungal medicine that Bill has been taking since he was at Dixie Regional. The big bad medicine is Amphotericin. He did this so that in a couple of months they would take Bill off the big bad medicine, because it was doing a lot of damage to his kidneys.

Also at the end of March 2012, Bill's aunt Margaret told us that she had sent a letter to President Monson about Bill's situation and condition. Bill's mom and his aunt's mother is a cousin to President Monson. President Monson was so kind to send a letter back and told her that Bill would be in the First Presidency daily prayers for 3 months. That sure made Bill feel better.

On April 4, 2012 Bill was told that there was nothing more that could be done and the hyerbaric chamber treatments would be stopping soon. On the 5th he was told that maybe a doctor at the new IHC hospital in Murray was willing to do another debridement around Bill's left eye and temple area. The doctor might have to take his eye to get all the mucormycosis. We prayed and talked to family and friends about this new development. Some were for it and others were against it. Bill's cousin David Schetselaar gave him a wonderful blessing on the 15th. Dr. Beninati, Dr. Pearl, and Dr. Clemmer ordered one last MRI to decide with the doctor at the new IHC hospital when to do the surgery. On the 20th all the doctors decided that it was to dangerous and disfiguring to do another debridement (surgery), so they started to make plans for us to come home. We were told that there was nothing more that could be done and we had 2 weeks to 2 months at the longest for Bill to live. We were coming home to make him comfortable and make memories. We left LDS hospital on April 25, 2012 and arrived home at 10:00pm.

Bill has been hoping to be home in time for the Dixie Junior Livestock show and that came true, because we went to the banquet on Friday, April 27th 2012 and they gave Bill the Corner Post Award. This is a big honor for him. We also went to the sell part of the show on Saturday. Bill couldn't stay to long, because he got tired so easily and he had to take medicine.

Bill started with dialysis February 22nd 2012. His kidneys hung on for a long time. The doctors told us in January that he might need to do dialysis, but his kidneys stabilized until Feb. Now that he is home, he will go to dialysis 3 days a week for 3 hours each time. He is going to Liberty Dialysis on Monday, Wednesday and Friday. We have home health care coming every Thursday to check on Bill. They check his G-tube, trach, meds, heart and general health. I (Jeanne) gives the amphotericin through his pick line and other meds through his G-tube (PEG).

After 5 sinus debridement the doctors at the University of Utah hospital diagnosed the fungus as mucormycosis. It is very rare and aggressive. No one has lived with this fungus. After the 5 sinus surgery's we were getting ready to go home. Dr. Hunt came for a check up with some students and found out Bill had a bacterial infection (Jan. 26th). Dr. Hunt decided to do one more sinus clean out (Jan. 28th) before we went home and found that the fungal infection had started to eat the bone in Bill's face. He went back into surgery (Feb. 1st) and the doctors removed his top jaw and the cheek bone on the left side of his face. He has a trach tube and a G-tube to eat with. One more MRI was done and they found that the fungus was still growing. They doctors told us that there was nothing more they could do and they were going to send us home to make Bill comfortable until he passed away. Within 30 to 45 minutes, they came back and asked if we would like to try hyperbaric chamber treatments, to see if it would stop the fungus. Mucormycosis does not like oxygen. Of course we said yes, so we were sent to LDS hospital (Feb. 9th). Bill's dad passed away this same day at 6:40 am. I didn't tell Bill about it until Saturday the 11th, when the kids came up to the hospital.  

I had to go back to work on Monday, Feb. 21st. I was so sad to leave Bill alone at the hospital, but the nurses took really good care of him and I drove up every weekend until April 20th. After I had to come back to St. George the hyperbaric chamber treatments were harder for Bill deal with. He had to take anxiety and depression medicine.

 We better start at the very beginning: On December 21, 2011, Bill had complained of his lips feeling swollen and sinus pain on the left side of his face. I didn't see the swelling on his lips, so I just gave him sinus and pain medicine.

December 22, 2011 - Bill's left eye is swelling a bit, so we went to Dr. Christian's office. He still has sinus pain and so the doctor gave us meds for the sinuses. Bill also said that his cheek is numb along with his lips.

Monday, December 23rd - Up very early because Bill is in more pain than he can handle. We go to the emergency room. After a CAT scan it looks like his sinuses are dark and that there is an abscess by a tooth on the right side (the tooth was never the problem even though the ER doctor felt is was). Bill is given different meds for his sinuses and pain.

Saturday, December 24, 2011, Bill's eye is more swollen, along with his lips and almost all of the left side of his face is numb.

Christmas - Bill watches us open our Christmas gifts and opens some of his, but he is in a lot of pain and the sinus and pain meds don't seem to be working.

We can't get into see Dr. Christian until the 26th and as soon as he sees Bill, he refers us to Dr. Doxey and we walk right over to his office. As soon as Dr. Doxey sees Bill, he is sent to the hospital

While in the hospital all the symptoms seem to be an abscess on the tooth and sinus infections. The Infectious Disease doctor at the hospital says that the numbness on Bill's left side of his face is odd and not normal for sinus infections, so Dr. Doxey decided to do a sinus clean out, which is normal for a bad sinus infection on December 30th.

Dr. Doxey found that the tooth was not involved in the pain or swelling on Bill's face, it's a fungal infection and they feel that he needs to be in a hospital in Salt Lake. We were going to IHC in Murray. (refer to the first posts made on this site - then come back to January 4th for a more consistent reading of Bill's story)
 
January 4, 2012 - Bill is at the University of Utah hospital in the Neuro ICU. The doctors - Infectious Disease, ENT(Ear/Nose/Throat), Respiratory, and others are deciding what they need to do for Bill and they are trying to decide what kind of fungus it is. The main doctor is Jason P. Hunt and he spends half his time at the Huntsman Cancer hospital doing surgery on ear/nose/throat cancer patients. Bill will stay in ICU for just a few days.

On December 26th Bill was in Dixie Regional Hospital with what the doctors thought was a really bad sinus infection. The infectious disease doctor felt that the numbness in Bill's face was odd and as he talked with Dr. Doxey they decided to clean out his sinuses. After the procedure (Dec. 30th), we were told that Bill had a fungal infection and they were sending us to IHC hospital  in Murray. This was January 3rd and I had a presentation to do at school. When I came back from school, I found out that he was going to the University of Utah by ambulance instead. They put a pick line in his right arm and started him on a very powerful medicine that looks like Sunny D juice drink. It was called Amphotericin. He left St. George at about 5:00 pm. I left early the next morning.