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.
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.
Monday, July 30, 2012
Hello Hospital Room Day + 68
I'm going to make this short. It's been a L O N G D A Y..... I will go into detail tomorrow what today has dished out to us. In short, this morning we left the house to go to Dr Whites office for his appointment at 11am to discuss the possibility of pulling out the rod in his left humorous that was put in last year but has caused him to develop the bone infection after his transplant. We got a mile from the house and he had me stop so he could throw up. I gave him some Immotrole but a few miles down the road he had to purge again. We were able to keep going with out any further problems. We had to stop at the lab to drop off his 24 hour urine sample, which also meant that they had to draw a blood sample to go along with it... That's when all of Stevan's problems began to get worse. I will leave these next details til tomorrow.
We are now in a room at OU Medical, settling in for the night. Tomorrow will bring more information for you and surgery for Stevan.
Please be patient with me as I try to keep you up to date. It does take time to type everything up in an orderly and understandable fashion and sometimes.... I'm on overload and I can't seem to get the words out because I don't understand what we are being told until I sit and absorb it for a bit. Thank you for your thoughts and prayers. Reading your words here and on Facebook lift me up, while God gives me strength to carry on.
We are now in a room at OU Medical, settling in for the night. Tomorrow will bring more information for you and surgery for Stevan.
Please be patient with me as I try to keep you up to date. It does take time to type everything up in an orderly and understandable fashion and sometimes.... I'm on overload and I can't seem to get the words out because I don't understand what we are being told until I sit and absorb it for a bit. Thank you for your thoughts and prayers. Reading your words here and on Facebook lift me up, while God gives me strength to carry on.
Saturday, July 28, 2012
"I'm sick" Day +66
Everything was going so well with Stevan's transplant... now it seems like everything is going wrong.
Stevan did not feel good all day and has finally admitted that he is sick. We visited the Watermelon Festival in Valliant this morning before it got hot. And though we didn't stay very long, he threw up before getting his lunch today. He felt better afterwards, but he slept most of the afternoon. His stomach continues to be upset and around 9pm he began running a fever again... 100.3 He took two Tylenol and will be headed to bed soon. We think it best that he stay home tomorrow and not join us for church.
Yesterday was another long day in OKC. We started with an appointment with a PA, Natalie at the hospital. She was to give Stevan the look over and talk to him since he's been running a fever in the evenings, anywhere from 99.2 to 103 since Sunday night. She said that this could be a sign of the Vancomycin is not working on the bone infection. This means that the rod in Stevan's arm will have to be taken out in order for the infection to go away. Stevan has an appointment on Monday with Dr White, the orthopedic oncologist who placed the rod. He will make the final determination about the rod. If the rod is not pulled and the infection is not taken care of, it could result in Stevan loosing his arm or his life. He'll take the surgery!
We also discussed with her about getting a tandem transplant. We asked why Stevan was tested on his M-spike so soon and not wait til day 100. She said that the latest research is showing that labs taken at 4 to 6 weeks, if there a trace of M-spike it indicates they should do another transplant (tandem). Their thought is to continue to knock it back down further. She gave us a copy of Stevan's labs showing his M-spike over the past year so we could see the trend. (I have no idea what it all means or why the blood labs are different than the urine samples. This is something we plan on asking Dr Holter/Selby, unless some of my other MM readers want to help us out here.)
Blood labs
6/15/11 Two Monoclonal bands are observed in the beta/gamma region. Band 1 = 4.6 g/dL; Band 2 = 1.4 g/dL Markedly elevated total protein level observed along with two monoclonal bands, the strongest migrating in the beta-gamma interface region. The second monoclonal band is less intense and slightly more cathodic.
10/3/11 Two monoclonal bands are observed in the beta/gamma region Band 1 = .8 g/dL; Band 2 = .2 g/dL
1/12/12 M-spike not observed. Decreased total protein level observed along with a decrease in the gamma fraction. The pattern is consistent a "hypogammaglobulinemia" pattern. No monoclonal peaks are observed.
6/20/12 Monoclonal IGA Kappa #1 = .5 g/dL ; #2 = .1 g'dL Immunofixation shows IgA monoclonal protein with kappa light chain specificity.
Urine Sample
6/15/11 UR Protein mg/dl 6.3; UR Protein 24 hr 146.1; M-spike not observed, The urine protein electophoresis pattern reflects low molecular weight constituents found in normal urine. No proteinuria or anomalous protein is observed.
10/3/11 UR Protein mg/dl 8.9; UR Protein 24 hr 221.3; UPE shows atypical Gamma. Suggest serum and urine IFE, if clinically indicated.
1/12/12 UR Protein mg/dl 16.9; UR Protein 24 hr 373; Immunofix urine: Bence Jones Protein positive; kappa type. M-spike 11.8; M-spike 24 hr 44.0 Apparent monoclonal protein. Suggest urine IEP for further evaluation, if clinically indicated.
7/1/12 UR Protein mg/dl 13.6; UR Protein 24 hr 193.3; M-spike not observed. No monoclonality detected.
Natalie said that she would make sure that we get to speak with Dr Holter or Dr Selby on our next visit on Aug 15 to be able to ask more questions and have them to be more detailed in why they think Stevan needs to have a tandem.
Stevan then had his pulmonary test done to see how his lungs were doing. He did have some difficulty with this test. He realized that he doesn't have as much stamina as before the stem cell. He does get out of breath quite easily when he does any type of exercise. The tech told him to workout and do more cardio to help build his stamina up... Yeah right.
His last test was to look at his heart, specifically at his left side. All seemed well. It was a different kind of test than what he had done before. This time they took a sample of his blood and infused it with something for about 20 minutes. They then gave it back to him and took a picture of his heart pumping. It over-laid multiple pictures on top of themselves. The tech said that she would later be able to dissect his heart on the computer and move it around. Cool! The things they are able to do these days.
Last thing was to go get blood drawn for labs again. Not sure what tests are being done this time. Dr Holter had ordered some as well as Dr White. I'm sure we will get more information on Monday. Dr White, Orthopedic Oncologist, will see Stevan at 11am and hopefully we will have more information to pass alone about his arm and the rods. We are going to pack an overnight bag just in case he's still running fever and they decided to admit him. They may decide to pull the rod out Tue or Wed... we can only hope.
Stevan did not feel good all day and has finally admitted that he is sick. We visited the Watermelon Festival in Valliant this morning before it got hot. And though we didn't stay very long, he threw up before getting his lunch today. He felt better afterwards, but he slept most of the afternoon. His stomach continues to be upset and around 9pm he began running a fever again... 100.3 He took two Tylenol and will be headed to bed soon. We think it best that he stay home tomorrow and not join us for church.
Yesterday was another long day in OKC. We started with an appointment with a PA, Natalie at the hospital. She was to give Stevan the look over and talk to him since he's been running a fever in the evenings, anywhere from 99.2 to 103 since Sunday night. She said that this could be a sign of the Vancomycin is not working on the bone infection. This means that the rod in Stevan's arm will have to be taken out in order for the infection to go away. Stevan has an appointment on Monday with Dr White, the orthopedic oncologist who placed the rod. He will make the final determination about the rod. If the rod is not pulled and the infection is not taken care of, it could result in Stevan loosing his arm or his life. He'll take the surgery!
We also discussed with her about getting a tandem transplant. We asked why Stevan was tested on his M-spike so soon and not wait til day 100. She said that the latest research is showing that labs taken at 4 to 6 weeks, if there a trace of M-spike it indicates they should do another transplant (tandem). Their thought is to continue to knock it back down further. She gave us a copy of Stevan's labs showing his M-spike over the past year so we could see the trend. (I have no idea what it all means or why the blood labs are different than the urine samples. This is something we plan on asking Dr Holter/Selby, unless some of my other MM readers want to help us out here.)
Blood labs
6/15/11 Two Monoclonal bands are observed in the beta/gamma region. Band 1 = 4.6 g/dL; Band 2 = 1.4 g/dL Markedly elevated total protein level observed along with two monoclonal bands, the strongest migrating in the beta-gamma interface region. The second monoclonal band is less intense and slightly more cathodic.
10/3/11 Two monoclonal bands are observed in the beta/gamma region Band 1 = .8 g/dL; Band 2 = .2 g/dL
1/12/12 M-spike not observed. Decreased total protein level observed along with a decrease in the gamma fraction. The pattern is consistent a "hypogammaglobulinemia" pattern. No monoclonal peaks are observed.
6/20/12 Monoclonal IGA Kappa #1 = .5 g/dL ; #2 = .1 g'dL Immunofixation shows IgA monoclonal protein with kappa light chain specificity.
Urine Sample
6/15/11 UR Protein mg/dl 6.3; UR Protein 24 hr 146.1; M-spike not observed, The urine protein electophoresis pattern reflects low molecular weight constituents found in normal urine. No proteinuria or anomalous protein is observed.
10/3/11 UR Protein mg/dl 8.9; UR Protein 24 hr 221.3; UPE shows atypical Gamma. Suggest serum and urine IFE, if clinically indicated.
1/12/12 UR Protein mg/dl 16.9; UR Protein 24 hr 373; Immunofix urine: Bence Jones Protein positive; kappa type. M-spike 11.8; M-spike 24 hr 44.0 Apparent monoclonal protein. Suggest urine IEP for further evaluation, if clinically indicated.
7/1/12 UR Protein mg/dl 13.6; UR Protein 24 hr 193.3; M-spike not observed. No monoclonality detected.
Natalie said that she would make sure that we get to speak with Dr Holter or Dr Selby on our next visit on Aug 15 to be able to ask more questions and have them to be more detailed in why they think Stevan needs to have a tandem.
Stevan then had his pulmonary test done to see how his lungs were doing. He did have some difficulty with this test. He realized that he doesn't have as much stamina as before the stem cell. He does get out of breath quite easily when he does any type of exercise. The tech told him to workout and do more cardio to help build his stamina up... Yeah right.
His last test was to look at his heart, specifically at his left side. All seemed well. It was a different kind of test than what he had done before. This time they took a sample of his blood and infused it with something for about 20 minutes. They then gave it back to him and took a picture of his heart pumping. It over-laid multiple pictures on top of themselves. The tech said that she would later be able to dissect his heart on the computer and move it around. Cool! The things they are able to do these days.
Last thing was to go get blood drawn for labs again. Not sure what tests are being done this time. Dr Holter had ordered some as well as Dr White. I'm sure we will get more information on Monday. Dr White, Orthopedic Oncologist, will see Stevan at 11am and hopefully we will have more information to pass alone about his arm and the rods. We are going to pack an overnight bag just in case he's still running fever and they decided to admit him. They may decide to pull the rod out Tue or Wed... we can only hope.
Monday, July 23, 2012
Fever!!! Really??? Day +61
I got about three hours sleep this
morning after spending two hours in the Paris ER last night. Stevan wasn’t
feeling good yesterday afternoon. He began to complain about an upset stomach
after eating lunch and having his afternoon medicine. He layed down from 5pm
til 7:30pm. He finally got up to hang out with me and the kids, but after 10pm
he asked me to get the thermometer. He thought he might have a temperature...
sure enough, 101.1. We called the BMT unit in OKC and got ahold of his favorite
nurse, Jenny. We told her what was going on.
Let me back up a bit and tell you
the back story here. Friday Stevan and a friend of his began working on a
chicken pen that we desperately needed to house our growing population of
chickens, baby guineas and baby turkeys. Stevan doesn’t seem to know when to
stop... so he got too hot.
Jenny told us that she would call
the doctor on call and let us know what we should do. A few minutes later she
called and told us to go to the emergency room closest to us. I took his temp
again and it was going up.. 101.3 By the time we got him to Paris ER it was midnight and his fever
was up to 103. They ran a CBC, UA and urine culture, chest x-ray, and blood
cultures. Everything came back clean. They gave him two Tylenol and checked his
vitals after an hour. His fever dropped to 99.2 so they released him around 2:15am.
We called the Cancer clinic this
morning and told Sheri, the Medical Assistant, what had happened. We discussed
what he had been doing. She agreed that he more than likely just got too hot,
but she would discuss it with the doctor and would call back. She did say that
he didn’t need to be outside at all today.
Stevan slept most of the morning but
got up to go eat lunch at the "red B", where I was working today. He
then visited his mom and came home for his health care nurse to do her weekly
blood draw and hook him up to his medicine. He was asleep when I got home at
3:30pm. I layed down and we both slept till 7pm. I finally got up and did some
chores around the house, cracked open a watermelon for dinner and he got up to
eat some. Around 10pm he checked his temp again and it had come up again...
101. I checked it a few minutes later and it was at 100.
We discussed what to do and he
decided to take two Tylenol and go to bed. We will call the clinic again in the
morning and let them know what happened. I dont think either one of us can handle another night like last night.
Hopefully we won’t have to go to OKC, but I have my doubts
that they will have us stay to stay home and do nothing.
Thursday, July 19, 2012
Many Disappointments Day 57
I want to begin by finishing the story on Doris from yesterday. She was a sweet lady getting a allogeneic transplant while Stevan was finishing up his at the first of June. As I said yesterday when we got to Dr Holters office I saw her and began catching up with her and her husband. She wasn't feeling good and her husband was very concerned since she was sicker now than she was in the hospital. Before we went in for Stevan's appointment, Doris came out from seeing the doctor. I wished her luck and I hoped she got to feeling better. She simply said "We are going back to the hospital now." I can't tell you how much my heart hurt at that moment for her and her family. This was the beginning of our disappointments for the day.
We had been visiting with another couple, where the husband had been released from the BMT unit the Monday before Stevan. His wife, I discovered had been a nurse. She would get so frustrated with him because he wouldn't do what the doctor had told him to do. Her and I had a lot in common! LOL. He had been doing well, but he also was on an antibiotic for some kind of infection. He only had to take it twice a day. And like me, she has had to revolve everything around his medicine schedule. She said she felt like a jailer trying to make her husband do all the things he's supposed to do or keep him from doing. LOL. We shared stories and it made us feel so much better knowing we were not alone!
I can't remember exactly what was said after we got into the exam room, but this is close to how it went. Dr Holter was the only doctor in the office and the Physicians Assistants were taking the patients with general visits... yes that was us. The PA was nice and asked all of the general questions... how was he feeling, any coughing up blood, fainting, swelling, fevers... She listened to his heart and lungs. The only other thing I really remember her saying was... "It looks like we need to do a tandem. But we are ordering another round of labs to make sure." My question, "Does that mean there was an M-spike in the last set done at the last visit?" PA, "Yes, it appears there was still evidence of an M-spike. But sometimes that is the case so quickly after a transplant, that is why we want to go ahead and run labs again to make sure." The PA never said how much of an M-spike there was on the labs. I will be putting together some questions to either call and ask one of the nurses next week.
A nurse came in and we asked more questions, "How quickly are they wanting to do the tandem?" Nurse, "As quickly as possible. We will have to wait until he is done with his antibiotics for his bone infection, but as soon as that's done then yes he will be ready to do the transplant." Us,"Will he have to take more oral chemo before he goes back in for the transplant?" Nurse, "No, unless he waits several months to do the transplant, then yes." Us, "Will he need to have more tests done before the transplant, like before, on the heart and lungs? And if so, will it take as long to get his insurance to approve of the transplant?" Nurse, "Yes. Matter of fact we can go ahead and get those test done while we are waiting for approval and while he is finishing up his IV antibiotics."
Stevan will finish up his IV antibiotics, Vancomycin, on Aug 8th. Pattie, the BMT nurse coordinator called this morning to tell us that his Heart and Lung test will be July 27 in the afternoon. We will then have to go back over to the infusion room for more labs to be done for pre-transplant. His next appointment with Dr Holter is on Aug 15, which will will be able to ask more questions and get a date for admitting him for the tandem transplant. The nurse yesterday said it could be the following Monday, Aug 20, (the day I am supposed to go back to work).
Stevan is upset and of course disappointed. He said originally he didn't want to do the transplant, but God moved him to do it. Yesterday in the doctors office, the first thing he said was, he wasn't doing another one. He missed out on deer season last year, he wasn't missing it again this year. Then he said he'd wait till Christmas to do it. Last night we got alone, we talked and he's feeling hurt and disappointed. I pointed out the fact that his first transplant, went so well and fairly easy, compared to others we have read about. And if he considers the fact that now almost two months out he can do just about anything he wants (within reason). I told him that he really should just get it done as quickly as possible, so that he can get it over with and be ready to hunt at the end of October, when muzzleloading begins. I think it is beginning to sink in now.
There are still a lot of questions to be answered. I'm not sure how much I will be able to stay with him this time around. We know what to expect this time around. I will have to talk to my principal and see what I can do. I hate missing out on the first of school. It sets the tone for the rest of the year. But as it should be, Stevan is my main concern.
Thank you for the continued prayers.
We had been visiting with another couple, where the husband had been released from the BMT unit the Monday before Stevan. His wife, I discovered had been a nurse. She would get so frustrated with him because he wouldn't do what the doctor had told him to do. Her and I had a lot in common! LOL. He had been doing well, but he also was on an antibiotic for some kind of infection. He only had to take it twice a day. And like me, she has had to revolve everything around his medicine schedule. She said she felt like a jailer trying to make her husband do all the things he's supposed to do or keep him from doing. LOL. We shared stories and it made us feel so much better knowing we were not alone!
I can't remember exactly what was said after we got into the exam room, but this is close to how it went. Dr Holter was the only doctor in the office and the Physicians Assistants were taking the patients with general visits... yes that was us. The PA was nice and asked all of the general questions... how was he feeling, any coughing up blood, fainting, swelling, fevers... She listened to his heart and lungs. The only other thing I really remember her saying was... "It looks like we need to do a tandem. But we are ordering another round of labs to make sure." My question, "Does that mean there was an M-spike in the last set done at the last visit?" PA, "Yes, it appears there was still evidence of an M-spike. But sometimes that is the case so quickly after a transplant, that is why we want to go ahead and run labs again to make sure." The PA never said how much of an M-spike there was on the labs. I will be putting together some questions to either call and ask one of the nurses next week.
A nurse came in and we asked more questions, "How quickly are they wanting to do the tandem?" Nurse, "As quickly as possible. We will have to wait until he is done with his antibiotics for his bone infection, but as soon as that's done then yes he will be ready to do the transplant." Us,"Will he have to take more oral chemo before he goes back in for the transplant?" Nurse, "No, unless he waits several months to do the transplant, then yes." Us, "Will he need to have more tests done before the transplant, like before, on the heart and lungs? And if so, will it take as long to get his insurance to approve of the transplant?" Nurse, "Yes. Matter of fact we can go ahead and get those test done while we are waiting for approval and while he is finishing up his IV antibiotics."
Stevan will finish up his IV antibiotics, Vancomycin, on Aug 8th. Pattie, the BMT nurse coordinator called this morning to tell us that his Heart and Lung test will be July 27 in the afternoon. We will then have to go back over to the infusion room for more labs to be done for pre-transplant. His next appointment with Dr Holter is on Aug 15, which will will be able to ask more questions and get a date for admitting him for the tandem transplant. The nurse yesterday said it could be the following Monday, Aug 20, (the day I am supposed to go back to work).
Stevan is upset and of course disappointed. He said originally he didn't want to do the transplant, but God moved him to do it. Yesterday in the doctors office, the first thing he said was, he wasn't doing another one. He missed out on deer season last year, he wasn't missing it again this year. Then he said he'd wait till Christmas to do it. Last night we got alone, we talked and he's feeling hurt and disappointed. I pointed out the fact that his first transplant, went so well and fairly easy, compared to others we have read about. And if he considers the fact that now almost two months out he can do just about anything he wants (within reason). I told him that he really should just get it done as quickly as possible, so that he can get it over with and be ready to hunt at the end of October, when muzzleloading begins. I think it is beginning to sink in now.
There are still a lot of questions to be answered. I'm not sure how much I will be able to stay with him this time around. We know what to expect this time around. I will have to talk to my principal and see what I can do. I hate missing out on the first of school. It sets the tone for the rest of the year. But as it should be, Stevan is my main concern.
Thank you for the continued prayers.
Wednesday, July 18, 2012
Waiting For The News Day +56
Wanted to give everyone a quick update, as things have been busy with new baby chicks, church camp and a new baby calf. We are sitting at Dr Holters office right now, waiting to hear if Stevan's stem cell transplant was a success.
When we came into the office, I got to speak with Doris and her husband. She was another stem cell patient I met the last week that Stevan was in the hospital. Her numbers are up but she is feeling worse... Not sure why. She is a leukemia patient and was given her sister's stem cells, which make it a longer recovery. Her husband said the cells was 95% grafted into her body. Her story reminds us that God has taken very good care of us and we are blessed.
There has been so many prayers going around for us that I want to say thank you, and no matter what, we are in God's hands. It's been over a year since he's been diagnosed, we are past the tears of sorrow, and we know that things could be a lot worse.
I will post tomorrow the results of our visit.
Saturday, July 7, 2012
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.
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).
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.
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| Stevan looking at his picc line for the first time. |
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| The hole left in his chest from the Quinton line. |
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| 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.
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| This mama has seven babies. |
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| This is a goot mama. Her six babies are her second set this year. |
Thursday, July 5, 2012
Getting Answers Day +43
We got a phone call at 8am this morning telling us Stevan had an appt at 1pm for a sonogram. We told them that we lived about four hours away so that wasnt going to happen. She is going to get it reschedualled.
Tomorrow morning they will put in his picc line and in the afternoon will be taking out his central line. It was good to know they are concerned and getting things taken care if so quickly. Please pray that this takes care of the problems Stevan is having with is neck. I will post more information tomorrow.
Wednesday, July 4, 2012
Could There Be More Problems? Day +40
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).
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!
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| 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).
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| My 2nd picking of tomatoes and the first picking canned. |
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!
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| One of the watermelons we did damage to. Yes it was good and sweet! |
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