Home Day +72

Yesterday was a day for us to relax and catch up on things. I want to follow up with what happened to lead Stevan to be released. Stevan felt so much better on Wednesday morning. He had not ran a fever since Monday night. He had not had his Vancomycine since Sunday night. Dr White had ran a bone scan and saw that the infection had been responding to the antibiotic and looked better than before. His Potassium was on the low side, so they gave him some per IV and in a couple of pills and then was able to have his picc line removed. They sent the end of it to the lab to check for bacteria or infection.

They have increased his hydrocortisone in the AM from 20mg to 60mg and the PM from 10mg to 30mg for the next three days and then go to 30mg in the AM and 15mg in the PM for the next 30days. He will have an appointment with an endocrinologist on Aug 24 to talk to us about his adrenal insufficiency and how to continue to treat it.

Dr Holter came to visit Stevan and examine him. She said that she wants to wait to do the transplant for at least a month or two. She said that his kidneys are on their way back to being normal, but he must hydrate himself well with water to clean them out and help them to heal.

Before we left the hospital, I asked for copies of the blood work since we were there on Monday. Last night I got to looking at them and to my surprise I found out something that some of my MM readers had commented on and told us to watch for. I had posted before that Stevan's M spike on June 20th was Monoclonal IGA Kappa #1 = .5 and #2 = .1. On last Friday's visit, July 27, his blood test showed his M-spike to be .2 with a small M-skike noted in beta/gamma region. So what does this mean? His M-spike is still dropping and he's not on any maintance therapy.

With all of this combined, we feel like this is an answer to prayers. We hope that in a couple of months maybe his M-spike will be at zero. Definately something to look forward to.

And All Is Well Day +44

We are tired from yesterdays events. We were up at OU Medical Center to get Stevan's Picc Line inserted at 10am. The nurse we had has was a specially trained nurse who does picc lines all day. He was her first appointment. When we told her all of Stevan's symptoms and they were planning a sonogram of his neck to rule out a blood clot from the other line at 1pm, she decided to get things rearranged and do the sonogram first. The good news, everything looked great! No clot.

Stevan must have been nervous. His blood pressure was a lot higher than it had been in the weeks before. It took the nurse about 10 minutes to put the picc line in. I was able to stay in the room, but I decided I was not going to watch. A few days ago, Stevan and I had looked online and found a video of a picc line being put in. I was getting sick just watching it, so I decided not to watch Stevan's being placed. Stevan said the numbing shots hurt worse than the actual placing the line.

Stevan looking at his picc line
for the first time.

After lunch we headed to the Physicians Building to get Dr. Bender to remove his double lumen Quinton. Stevan was his last appointment of the day and he was running late to boot, but once we got in there it took less than five minutes for him to get prepped and pull out the line.  Again, Stevan said the needles numbing him hurt worse. Dr Bender stuck him about 3 or 4 times and I guess I blinked because I never saw him put the line out. Stevan said he got instant relief in his neck when Dr Bender pulled it out (he never saw him yank it out either).

The hole left in his chest from the Quinton line.

This is the Quinton line that was in his chest.
This is a big line compaired to the picc line.

They were concerned that the line was infected on the tip, but the nurse who assisted Dr Bender said that it did not look infected and it must have been aggravating the muscles in his shoulder into his neck causing him the swelling above the line placement, muscle spasms and pain in his neck.

Stevan says his neck feels much better now. No pain. His throat is still a bit sore but it should go away soon. The picc line will now be used over the next month to administer his antibiotics for his bone infection in his arm.

It was good to come home last night to this wonderful surprise. Its a reminder to enjoy the life going on around you as you deal with your health issues.

This mama has seven babies.

This is a goot mama. Her six babies are her second set this year.

Could There Be More Problems? Day +40



A pot of greenbeans I tipped and
canned this past week.

It has been a busy couple of weeks since my last post. I have been trying to get the house back in order, the garden under control and the animals sorted out. My garden had three foot high grass that I have had to mow and weed eat it to get to my tomatoes, peppers, squash, cucumbers, and okra. It has taken some long hours harvesting, cleaning and canning pickles, stewed tomatoes, salsa, green beans, and purple hull peas (the two latter ones given to me by my grandfather and mother-in-law). 


My 2nd picking of tomatoes and the
first picking canned.

It’s been so hot during the daytime, that we haven’t been doing much until after 8pm. We then have broken out the watermelon and enjoyed sitting out on the porch. This is about the only time Stevan can get outside without sweating and getting his port infected, which leads me into what happened yesterday at Stevan’s appointment.

We went to see Dr Jeremy White, Stevan's Orthopedic Oncologist. He is in charge of Stevans' left humerus bone that broke last summer and the infection in the upper part of the same bone, due to him not having an immune system after the SCT.

We discussed some of the changes in Stevan’s behaviors. He’s been sleeping a lot more than he was after he got out of the hospital. He's basically sick of being sick. Stevan has been getting an upset stomach after eating. He gets out of breath when he exerts himself, not that he can do much. Dr White said that is common in a lot of patients who have been sick for as long as he has and can't really do anything either.

We have questioned whether Stevan’s double lumen Quinton was causing the left side of his neck to hurt and have muscle cramps ever since his high fever in the hospital. At his last appt on June 20 with Dr Holter, in charge of his SCT, we we mentioned that the home health care nurse had not been able to draw blood from it and it seems to be collapsing when they tried. She ordered stronger Heparin to be used to pack it after his antibiotic is run and then his line flushed. She thought that this would keep it from clotting up. We mentioned all of this to Dr White today. He decided to let his nurse, Sarah, come in and "play" with his port and see if she could get some cultures drawn from it. It was a no go. After a closer look she said that is appeared to be slightly swollen above where the line was inserted into his chest.

Even though the hospital did an ultrasound on his chest and collarbone area before he left the hospital, thinking there was a problem with the line, Dr White wants another one done on specifically his neck to check for a blood clot that could be causing the trouble. He also wants to pull the line and put in a picc line to be use to finish his antibiotics. They would then test the tip of his Quinton line to see if there is bacteria on it.

Dr White needed  to talk to Dr Holter and discuss what they should do, before anything is done. Today a nurse from the BMT unit called to talk to Stevan to see what was going on. She told him they were scheduling him an appointment to get the line pulled and to put in a picc line. With the Fourth being tomorrow, she would get back with us and let us know. We figure it will be either Friday or the first of next week.

We did get to see the bone scan that was done. It show a dark spot at the top of his left humerus where everywhere else was gray in color. It was a pretty poor visual but you could tell something was different there. We also saw a few x-rays that was taken during the bone biopsy. They really didn't show anything other than where they took the biopsy at from the bone.

We will be hanging out here at the house tomorrow, trying to stay cool. Happy Fourth of July!

One of the watermelons we did damage to.
Yes it was good and sweet!