Right after I posted my last post we asked the nurse to call Stevan's doctors and see if we could find out what was going on since no one had been back to talk to us. She did and we got to talk to him over the phone.
Dr Lam said that the team of doctors looked at Stevan's bone scan and it actually showed that the infection looked better. So Dr White is a little reluctant to pull the rod out since it has responded to the Vancomycine. We will need to follow up with Dr White about his arm next week. Since his Vancomycine level is so high (he has enough in his system to last five more days) they have decided not to continue it.
So what was the whole problem? They believe a combination of high level of Vancomycine and not enough Hydrocortisone in his system. Back in April, Dr Holter prescribed him Hydrocortisone for him after she learned that he still had been having diarrhea (over a year), diagnosing him with an adrenal gland deficiency. The problem is that we were never told to follow up with a Endocrinologists to explain to us how to adjust his dose when he got sick. They have increased his dose of Hydrocortisone now, which is part of why he is feeling better.
They are going to watch him over night and in the morning. If his blood levels are good tomorrow and he doesn't run a temp tonight then he will be released to go home tomorrow. He is now getting ready to eat since he hasn't been able to all day thinking they were going to operate on him.
God has taken care of us once again. Thank you for the prayers. We can now focus on a possibility of a second transplant. We still have lots of questions for the transplant team over this.
Us before Myeloma
Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.
Showing posts with label infection of the bone. Show all posts
Showing posts with label infection of the bone. Show all posts
Tuesday, July 31, 2012
A Night Mare Of A Day Explained Day +69
Yesterday was a really bad day. I need to fill in what happened to bring us to a room here at OU Medical Center.
Sunday Stevan slept all morning, but joined us as we went to eat at our neighbors cafe for lunch. He ate a burger but said that his stomach was bothering him and was upset. We got home and I hooked him up to his medicine as always and he laided down for his nap. By 4:30pm he was running a fever, 100.2. At 6:30pm it was coming up, 100.6 and two hours later it was at 101.5. He took two Tylenol and I called the BMT Unit. I let them know what was going on and that this had been going on for a week now. She suggested that we pack up and come in right then. We told her that we were to be at Dr Whites office the next day anyway, we would wait. She said that she would make a note on his record what was going on. By 11pm it had dropped to 99.1.
We got on the road at 6am and headed to Grandma's to drop off the kids and hook him up to his morning dose of Vancomycin, but got a mile down the road and Stevan yelled stop the car. He threw open the door and puked. He said that it tasted like medicine. I gave him some Emetrol and we continued on. About five miles further, he yelled stop again, purging the rest of what was in his stomach. At this point I decided that I was not hooking him up to his medicine until the doctors told me to. I called the BMT Unit again and let them know that we were on our way and what had just happened. I gave him a 25 mg of Phenergan and we continued to OKC to see Dr White.
Stevan slept the rest of the drive to OKC. He had to turn in his 24 hour urine sample and give a blood sample at the lab. They couldn't get it to draw on the first poke and on the second it was going slow (they said he was dehydrated from throwing up earlier). Before they got the comlete sample, Stevan passed out and began throwing up. He was blackout for a good bit (estimate about a minute) before coming too. The lab tech's called the medics and got him a cot but he didn't want to lay down. He was beginning to feel better by the time the medics got there and began checking him out.
I can't begin to tell you how I felt seeing Stevan passing out and throwing up... completely helpless. All I could do was hold the trashcan with one hand and try to hold him up in the chair with the other.
They were wanting to take him to the ER but he said that he had to go see Dr White and see what to do about the rod. One of the medics decided to go talk to Dr White and see if he would come check him out and help Stevan made a decision on what to do. It wasn't long after that Stevan passed out again and started throwing up again. This time he wasn't out for nearly as long. The medic that was watching him said that he was taking him regardless what he said at that point. I told the medic that there was no question, Stevan was going to the ER no matter what.
Stevan was admitted to the ER around noon and they began drawing blood for cultures, labs, x-ray and began an IV fluid. After the ER doctor coming in to check him out, then an orthopedic intern came in several times... By 4:45pm, the orthopedic intern came in and told us that Dr White wasn't going to see him today, but would schedule us another day to check him out and visit with him and then left. Stevan and I looked at each other and came to the conclusion that it seemed that they were about to discharge Stevan and we still didn't have any answers. I decided that this was not going to happen, he had been running fever and sick for too long.
I called Patti, the transplantt coordinator at the cancer center and told her where we were and what was going on and that we were afraid that they were going to release him and we didn't want that to happen. She told me that she would make some phone calls and see what she could do.
About 45 minutes later the orthopedic intern came in and asked if someone had come to update us what was going on. "NO." He then said that they were working on admitting him and see what was making him sick. We were relieved... we thought we were about to have the first bad experience here at OU.
A bit later Dr David Lam from the Cancer Center came in and began to tell us what had been going on behind the scenes and the results of the tests that had been done. Stevan's inflamation level was at a 154 and at an 8 tells them there is an infection. He also said that he knew about Stevan on Wednesday last week and had set up all the tests to prepare him for surgery and was disappointed that Dr. White didn't see him. He had also thought that Stevan was about to be discharged and he started making phone calls to make sure that didn't happen. Apparently he got pissed off and called Dr White's Intern and pissed him off, who in turn called Dr White and pissed him off. Dr White then called Dr Lam and chewed him out. During that time some communication finially started happening and Dr Lam found out that Stevan was on the schedule for surgery Tuesday afternoon, something Dr White's Intern failed to tell Dr Lam.
Dr Lam is a very committed doctor, he continued to come in and informing us of things that we needed to know. He asked us who had prescribed Stevan the hydrocortizone. I told him Dr Holter. He wanted to know if we had followed up with an Endocrinologist. "NO." Did anyone tell you that you should increase his dose when he feels sick? No. Well when he's feeling sick he should double the dose. When he's really sick like he was, throwing up, he should have tripled his dose. That was part of why Stevan was feeling good.
Finally, Dr Lam told us that Stevan's kidney's had taken a hit and were not working right. WHAT? What do you mean? Stevan's kidney's are not "hot", but tests show that his kidney's were not working correctly but it was not permanent damage and with time it was reversible. So what was the cause of this... too high of a dose of Vancomycin. This morning when Dr Lam and Dr Selby came in to visit, Dr Lam told us that Stevan's Vancomycin level last night (almost 24 hours after his last dose) was at 60. WHAT?! Last Monday it was at 25.7 which is high, considering its supposed to stay around 20. No wonder Stevan was throwing up and sick. He was being overdosed.
This morning Dr White also came in and checked on Stevan. He ordered another bone scan to see what was going on with his arm. There was one done before Stevan was released after the transplant. White is having a hard time believing that the bone is infected, considering there is no symptoms in the arm, which is unusual. He said that when the bone is infected, it tells you by having other symptoms. He thinks that Stevan was having a medicine fever, caused by the overdose of the Vancomycin.
We are now waiting on the results of the bone scan to see if Dr White will actually be pulling the rod out after all. If there is no hot spot in the bone, then Dr White is going to suggests that Stevan goes off the Vancomycin and see what happens.
I will post more when we get more information as the day goes by. Stevan is feeling better, he's not nauseous, hasn't ran a fever since last night, 99.3. He's been sleeping this afternoon like he usually does.
Sunday Stevan slept all morning, but joined us as we went to eat at our neighbors cafe for lunch. He ate a burger but said that his stomach was bothering him and was upset. We got home and I hooked him up to his medicine as always and he laided down for his nap. By 4:30pm he was running a fever, 100.2. At 6:30pm it was coming up, 100.6 and two hours later it was at 101.5. He took two Tylenol and I called the BMT Unit. I let them know what was going on and that this had been going on for a week now. She suggested that we pack up and come in right then. We told her that we were to be at Dr Whites office the next day anyway, we would wait. She said that she would make a note on his record what was going on. By 11pm it had dropped to 99.1.
We got on the road at 6am and headed to Grandma's to drop off the kids and hook him up to his morning dose of Vancomycin, but got a mile down the road and Stevan yelled stop the car. He threw open the door and puked. He said that it tasted like medicine. I gave him some Emetrol and we continued on. About five miles further, he yelled stop again, purging the rest of what was in his stomach. At this point I decided that I was not hooking him up to his medicine until the doctors told me to. I called the BMT Unit again and let them know that we were on our way and what had just happened. I gave him a 25 mg of Phenergan and we continued to OKC to see Dr White.
 |
| Only with God's strength was I able to get through yesterday. |
I can't begin to tell you how I felt seeing Stevan passing out and throwing up... completely helpless. All I could do was hold the trashcan with one hand and try to hold him up in the chair with the other.
They were wanting to take him to the ER but he said that he had to go see Dr White and see what to do about the rod. One of the medics decided to go talk to Dr White and see if he would come check him out and help Stevan made a decision on what to do. It wasn't long after that Stevan passed out again and started throwing up again. This time he wasn't out for nearly as long. The medic that was watching him said that he was taking him regardless what he said at that point. I told the medic that there was no question, Stevan was going to the ER no matter what.
As they took him into the elevator, Dr White was coming down the hall. I walked with him downstairs to tell him what had been happening today. White caught up to Stevan and told him that he had to go to the hospital and that he would come over and check him out over there.
Stevan was admitted to the ER around noon and they began drawing blood for cultures, labs, x-ray and began an IV fluid. After the ER doctor coming in to check him out, then an orthopedic intern came in several times... By 4:45pm, the orthopedic intern came in and told us that Dr White wasn't going to see him today, but would schedule us another day to check him out and visit with him and then left. Stevan and I looked at each other and came to the conclusion that it seemed that they were about to discharge Stevan and we still didn't have any answers. I decided that this was not going to happen, he had been running fever and sick for too long.
I called Patti, the transplantt coordinator at the cancer center and told her where we were and what was going on and that we were afraid that they were going to release him and we didn't want that to happen. She told me that she would make some phone calls and see what she could do.
About 45 minutes later the orthopedic intern came in and asked if someone had come to update us what was going on. "NO." He then said that they were working on admitting him and see what was making him sick. We were relieved... we thought we were about to have the first bad experience here at OU.
A bit later Dr David Lam from the Cancer Center came in and began to tell us what had been going on behind the scenes and the results of the tests that had been done. Stevan's inflamation level was at a 154 and at an 8 tells them there is an infection. He also said that he knew about Stevan on Wednesday last week and had set up all the tests to prepare him for surgery and was disappointed that Dr. White didn't see him. He had also thought that Stevan was about to be discharged and he started making phone calls to make sure that didn't happen. Apparently he got pissed off and called Dr White's Intern and pissed him off, who in turn called Dr White and pissed him off. Dr White then called Dr Lam and chewed him out. During that time some communication finially started happening and Dr Lam found out that Stevan was on the schedule for surgery Tuesday afternoon, something Dr White's Intern failed to tell Dr Lam.
Dr Lam is a very committed doctor, he continued to come in and informing us of things that we needed to know. He asked us who had prescribed Stevan the hydrocortizone. I told him Dr Holter. He wanted to know if we had followed up with an Endocrinologist. "NO." Did anyone tell you that you should increase his dose when he feels sick? No. Well when he's feeling sick he should double the dose. When he's really sick like he was, throwing up, he should have tripled his dose. That was part of why Stevan was feeling good.
Finally, Dr Lam told us that Stevan's kidney's had taken a hit and were not working right. WHAT? What do you mean? Stevan's kidney's are not "hot", but tests show that his kidney's were not working correctly but it was not permanent damage and with time it was reversible. So what was the cause of this... too high of a dose of Vancomycin. This morning when Dr Lam and Dr Selby came in to visit, Dr Lam told us that Stevan's Vancomycin level last night (almost 24 hours after his last dose) was at 60. WHAT?! Last Monday it was at 25.7 which is high, considering its supposed to stay around 20. No wonder Stevan was throwing up and sick. He was being overdosed.
This morning Dr White also came in and checked on Stevan. He ordered another bone scan to see what was going on with his arm. There was one done before Stevan was released after the transplant. White is having a hard time believing that the bone is infected, considering there is no symptoms in the arm, which is unusual. He said that when the bone is infected, it tells you by having other symptoms. He thinks that Stevan was having a medicine fever, caused by the overdose of the Vancomycin.
We are now waiting on the results of the bone scan to see if Dr White will actually be pulling the rod out after all. If there is no hot spot in the bone, then Dr White is going to suggests that Stevan goes off the Vancomycin and see what happens.
I will post more when we get more information as the day goes by. Stevan is feeling better, he's not nauseous, hasn't ran a fever since last night, 99.3. He's been sleeping this afternoon like he usually does.
Tuesday, June 12, 2012
Still Waiting Day +20
Yes, we are still here at OU Medical. Nothing happened yesterday except they have decided to take Stevan off the antibiotics for the next 48 hours in order for them to perform a biopsy of the bone in his arm.
There was talk of the biopsy occurring today, but this morning Dr Jeremy White, Stevan's orthopedic oncologist, came in this morning to get the ok from us on what he was expected to do. He told us that the rod is not loose inside the bone, but he would schedule Stevan for the biopsy tomorrow afternoon. This will consist of him going into the OR and being sedated, in order for Dr White to stick a needle into the bone and into the joint to pull out fluid and bone to grow a culture. He said that if it shows there is infection, the rod could be taken out in order to help resolve the issue as a last resort.
Dr Holter came in and told us after the biopsy, they would put Stevan back on antibiotics for 24 hours and if all was well, she would release him. Stevan asked her who was then in charge of him, with so many Doctors now involved again. She said that Dr White is in charge of the arm and infection. She is in charge of the transplant for the week after he is released and then he will be handed back over to Dr Khalil, Stevan's oncologist. Stevan will continue to see him in the weeks to come so that Dr Khalil can follow his blood counts. Dr Holter did say that if the biopsy shows that there is an infection in his bone, she will set up home health care so they can come to the house and administer his IV antibiotics over the next 6 to 8 weeks.
So that is the plan as of now. Stevan had some cramping in his neck again this morning. He ate breakfast, a couple of bowls of cereal, a first in a few days. He's now taking a nap. I'm about to get out for a few hours and walk the mall and Wal-mart.
There was talk of the biopsy occurring today, but this morning Dr Jeremy White, Stevan's orthopedic oncologist, came in this morning to get the ok from us on what he was expected to do. He told us that the rod is not loose inside the bone, but he would schedule Stevan for the biopsy tomorrow afternoon. This will consist of him going into the OR and being sedated, in order for Dr White to stick a needle into the bone and into the joint to pull out fluid and bone to grow a culture. He said that if it shows there is infection, the rod could be taken out in order to help resolve the issue as a last resort.
Dr Holter came in and told us after the biopsy, they would put Stevan back on antibiotics for 24 hours and if all was well, she would release him. Stevan asked her who was then in charge of him, with so many Doctors now involved again. She said that Dr White is in charge of the arm and infection. She is in charge of the transplant for the week after he is released and then he will be handed back over to Dr Khalil, Stevan's oncologist. Stevan will continue to see him in the weeks to come so that Dr Khalil can follow his blood counts. Dr Holter did say that if the biopsy shows that there is an infection in his bone, she will set up home health care so they can come to the house and administer his IV antibiotics over the next 6 to 8 weeks.
So that is the plan as of now. Stevan had some cramping in his neck again this morning. He ate breakfast, a couple of bowls of cereal, a first in a few days. He's now taking a nap. I'm about to get out for a few hours and walk the mall and Wal-mart.
Sunday, June 10, 2012
Another Day In The BMT Unit Day +18
Another boring day around here at OU Medical in the Bone Marrow Transplant Unit. Stevan had more cramping on the left side of his neck this morning. Dr Mo ordered a stronger kind of muscle relaxer for him to use from now on. It seems to be working a lot better than the Flexeril. He slept til about noon, when I finally went and subway and picked us up a sandwich. His redheaded nurse, Jenni, gave us a map tonight that has a list of local restaurants around close to the hospital. I'm going to have to venture out and try some to the other local places around. We both miss our home cooking.
Stevan took a two hour nap this afternoon before walking the longest he's ever done. A whole 35 minutes back and forth down our small hallway. Then into the shower and resting for the rest of the night. He only ate a small amount of dinner, which has been normal here lately.
A friend of Stevan's cousin, Tabatha, stop by to visit us. Pat Robinson was admitted four days ago to remove a spot of cancer off of her lung. For someone who had part of her lung taken out, she looked amazing. She had talked to Tabatha and learned that we were here at the same hospital. So with a tube still in her chest to drain fluid from her lung she asked her doctor if she could come upstairs to see us. We had a nice visit with her and learned her story and told her ours. It was nice to talk to someone from home. Lucky her, she gets to go home tomorrow.
I'm finishing up laundry tonight. I've been given the code to the room that contains a washer and dryer for me to use. Its a mini one but it beats going somewhere else to do laundry and having to wait for a couple of hours to get it done. The only catch is I have to run a bleach cycle before putting Stevan's clothes in for sanitary purposes. I can handle that!
Hopefully tomorrow we will find out what the doctors have in store for Stevan. I asked the nurses if the antibiotics and anti-fungal was keeping the fever at bay. She said yes. The antibiotic were currently treating the symptoms. If Stevan does have an infection of the bone, it will have to be treated differently than what they are currently doing. So if the doctors take him off of antibiotic, then his fever will return more than likely before they take his bone biopsy. They will then more than likely be forced to put him back on antibiotics to get his fever back down until the results come back with the answers they are looking for to they can treat it specifically.
Tune it tomorrow for what they are planning next. We can't wait either. Thank you for the prayers.
Stevan took a two hour nap this afternoon before walking the longest he's ever done. A whole 35 minutes back and forth down our small hallway. Then into the shower and resting for the rest of the night. He only ate a small amount of dinner, which has been normal here lately.
A friend of Stevan's cousin, Tabatha, stop by to visit us. Pat Robinson was admitted four days ago to remove a spot of cancer off of her lung. For someone who had part of her lung taken out, she looked amazing. She had talked to Tabatha and learned that we were here at the same hospital. So with a tube still in her chest to drain fluid from her lung she asked her doctor if she could come upstairs to see us. We had a nice visit with her and learned her story and told her ours. It was nice to talk to someone from home. Lucky her, she gets to go home tomorrow.
I'm finishing up laundry tonight. I've been given the code to the room that contains a washer and dryer for me to use. Its a mini one but it beats going somewhere else to do laundry and having to wait for a couple of hours to get it done. The only catch is I have to run a bleach cycle before putting Stevan's clothes in for sanitary purposes. I can handle that!
Hopefully tomorrow we will find out what the doctors have in store for Stevan. I asked the nurses if the antibiotics and anti-fungal was keeping the fever at bay. She said yes. The antibiotic were currently treating the symptoms. If Stevan does have an infection of the bone, it will have to be treated differently than what they are currently doing. So if the doctors take him off of antibiotic, then his fever will return more than likely before they take his bone biopsy. They will then more than likely be forced to put him back on antibiotics to get his fever back down until the results come back with the answers they are looking for to they can treat it specifically.
Tune it tomorrow for what they are planning next. We can't wait either. Thank you for the prayers.
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