Tuesday, March 31, 2009
News!!
The biopsy came back showing no signs of rejection!! Obviously we're very happy. They adjusted her Prograf level and will likely switch her to Rapamune after the upcoming surgery. We're supposed to be contacted by Dr. V's office with the surgery plan, I'll let you know when we know.
Testing Day Update
We got through the testing yesterday. Both of the tests caused Katie quite a bit of anxiety. We were able to stay with her for the VCUG and they allowed her to insert the catheter herself which helped but there was still some crying. We had one of our very favorite Child Life specialists with us which was great. She was able to stay with Katie throughout the biopsy procedure. Again there was crying with that as well. Katie admittedly is trying to adjust to the fact that Dr. M does understand that Katie needs to be told everything that's happening and will happen, and she is telling her what she needs. Last night Katie said that she needs to remember that Dr. M really will tell her and won't do anything without telling her. Hopefully, she'll remember that for any future procedures.
The chief of peds radiology was in the room for the VCUG and yet he wasn't sure if there was reflux into the new kidney or not. He wants to study a few of the pictures to be sure he's seeing reflux where he thought he might have been. She is definitely refluxing up into the old kidney which leads into the theory of the bacteria getting up there and then hanging out.
Dr. M said the biopsy results might have been back as early as yesterday afternoon but that we probably wouldn't hear from her until this afternoon because she might want to consult with others and think over how she wants to proceed.
The chief of peds radiology was in the room for the VCUG and yet he wasn't sure if there was reflux into the new kidney or not. He wants to study a few of the pictures to be sure he's seeing reflux where he thought he might have been. She is definitely refluxing up into the old kidney which leads into the theory of the bacteria getting up there and then hanging out.
Dr. M said the biopsy results might have been back as early as yesterday afternoon but that we probably wouldn't hear from her until this afternoon because she might want to consult with others and think over how she wants to proceed.
Thursday, March 26, 2009
The big catch up
I'm behind in here so I'm going to try to get you caught up without being confusing.
On Friday, 3/20 we saw Dr. V. He wants to remove the native kidney. He seems to think that it could be acting as a "stagnant pond" for the bacteria and with very little blood and urine flowing through it the abx aren't reaching to it. He is however, not completely convinced this is the solution to the ongoing/recurring infection problem. But since it does make sense we agreed to go forward. He wants to do a VCUG first to see if she is refluxing from the bladder into the new kidney. Since we already had the biopsy planned he wanted to try to schedule the VCUG for the same day before the biopsy. Obviously we don't want to suck out a piece of the kidney and then potentially fill it up with urine so one has to go before the other. At the time, he wasn't sure he could get it scheduled but today (3/26) we found it it did get scheduled for 8:30am on the 30th.
So, once the biopsy results are back, and provided they don't show anything we're not expecting, the surgery will be scheduled. The biopsy results should only take 48 hours to come back. I talked to Dr. M's nurse today and it really sounds like they expect the results to be the medication toxicity; however, they won't be able to make the switch to the replacement med until after the surgery because one of its side effects is poor wound healing... That didn't seem to be a big deal, the nurse said that Dr. M would likely just reduce her Prograf dosage. Her creatinine from the 3/24 labs was still at 0.9, so I asked if renal transplants can rebound after a prolonged increase in creatinine like this and she said "yes, absolutely!" So, that made me feel better.
We talked to Dr. V about how long the hospital stay would be and how long the recovery would be. He's giving some thought to saving the ureter from that old kidney to use later to make into bladder tissue. If he does that then it will be a longer stay with potential external drains. If he doesn't do that then it should be just an overnight stay with pain management as really the only issue. We'll know more when he makes that final decision. We understand the pros and cons and have decided to let him make that decision.
Katie has been pretty upset. We've also had some other family sadness lately as my mother in law passed away late last week, Steve and I left for New York last Saturday, I came home alone on Monday and the kids and I went back up on Tuesday (3/24) for the viewings and funeral. Today Katie had to stay home from school for another day because of a migraine. Seems like the combination of 2 late nights and the stress didn't sit well with her system. She had a PICC line dressing change today which seemed to really upset her too. I'm thinking of talking to the docs about pulling the PICC out when we finish these abx. Even if we have to have a new one put back in after the biopsy then so be it, but her skin is really broken down and I'm really worried about the scar tissue that's being created around the catheter. It's definitely something to think about.
We also gave a urine culture sample on Tuesday to be sure the abx was working before doing the biopsy and that came back clean, so we are definitely a go for the biopsy on Monday.
If you're confused or have any questions, please feel free to ask.
On Friday, 3/20 we saw Dr. V. He wants to remove the native kidney. He seems to think that it could be acting as a "stagnant pond" for the bacteria and with very little blood and urine flowing through it the abx aren't reaching to it. He is however, not completely convinced this is the solution to the ongoing/recurring infection problem. But since it does make sense we agreed to go forward. He wants to do a VCUG first to see if she is refluxing from the bladder into the new kidney. Since we already had the biopsy planned he wanted to try to schedule the VCUG for the same day before the biopsy. Obviously we don't want to suck out a piece of the kidney and then potentially fill it up with urine so one has to go before the other. At the time, he wasn't sure he could get it scheduled but today (3/26) we found it it did get scheduled for 8:30am on the 30th.
So, once the biopsy results are back, and provided they don't show anything we're not expecting, the surgery will be scheduled. The biopsy results should only take 48 hours to come back. I talked to Dr. M's nurse today and it really sounds like they expect the results to be the medication toxicity; however, they won't be able to make the switch to the replacement med until after the surgery because one of its side effects is poor wound healing... That didn't seem to be a big deal, the nurse said that Dr. M would likely just reduce her Prograf dosage. Her creatinine from the 3/24 labs was still at 0.9, so I asked if renal transplants can rebound after a prolonged increase in creatinine like this and she said "yes, absolutely!" So, that made me feel better.
We talked to Dr. V about how long the hospital stay would be and how long the recovery would be. He's giving some thought to saving the ureter from that old kidney to use later to make into bladder tissue. If he does that then it will be a longer stay with potential external drains. If he doesn't do that then it should be just an overnight stay with pain management as really the only issue. We'll know more when he makes that final decision. We understand the pros and cons and have decided to let him make that decision.
Katie has been pretty upset. We've also had some other family sadness lately as my mother in law passed away late last week, Steve and I left for New York last Saturday, I came home alone on Monday and the kids and I went back up on Tuesday (3/24) for the viewings and funeral. Today Katie had to stay home from school for another day because of a migraine. Seems like the combination of 2 late nights and the stress didn't sit well with her system. She had a PICC line dressing change today which seemed to really upset her too. I'm thinking of talking to the docs about pulling the PICC out when we finish these abx. Even if we have to have a new one put back in after the biopsy then so be it, but her skin is really broken down and I'm really worried about the scar tissue that's being created around the catheter. It's definitely something to think about.
We also gave a urine culture sample on Tuesday to be sure the abx was working before doing the biopsy and that came back clean, so we are definitely a go for the biopsy on Monday.
If you're confused or have any questions, please feel free to ask.
Monday, March 16, 2009
The Plan
The culture from Friday came back with greater than 100,000 colony forming units of VRE (same bacteria as before.) We will be treating it for 14 days starting tomorrow. It's given every 12 hours which means that Steve and/or I have to get up really early so that we can start it at 6am so that it can be done running by the time she needs to leave for school.
The appointment with Dr. V has been moved up to this Friday at 9am... did I already say that, I apologize if that is a repeat.
On 3/24 we'll get labs and another culture at UMMC. If that culture shows that the abx is working then on 3/30 she will have her biopsy.
We also have Flashes of Hope on the 25th so we'll be back and forth to the hospital quite a bit over the next 2 weeks.
I'm also taking her to the eye doctor tomorrow afternoon because she has had a headache for over a week now. Although, this afternoon someone suggested to me that it could be a prednisone side effect and that prednisone can cause vision changes so, who knows. The optometrist suggested bifocals for her last August but I just thought she was too young, so step one will be to get those for her.
The appointment with Dr. V has been moved up to this Friday at 9am... did I already say that, I apologize if that is a repeat.
On 3/24 we'll get labs and another culture at UMMC. If that culture shows that the abx is working then on 3/30 she will have her biopsy.
We also have Flashes of Hope on the 25th so we'll be back and forth to the hospital quite a bit over the next 2 weeks.
I'm also taking her to the eye doctor tomorrow afternoon because she has had a headache for over a week now. Although, this afternoon someone suggested to me that it could be a prednisone side effect and that prednisone can cause vision changes so, who knows. The optometrist suggested bifocals for her last August but I just thought she was too young, so step one will be to get those for her.
Friday, March 13, 2009
Let me see if I can explain all of this in a clear manner.
I spoke to Dr. M. She is encouraged by the clean culture from LabCorp but she's not convinced and wanted a culture process by another facility. So I drove a sample down to the UMMC lab this afternoon. When that comes back if the volume of bacteria is 50,000 or greater she will treat the infection with the appropriate IV abx for 7-14 days.
Katie's creatinine is up to 0.94 which is a bit concerning and could mean a couple of things. She doesn't think that it's completely because of dehydration. It could be, like a mentioned yesterday, a toxicity to Prograf. Dr. M also said it could be some small level of rejection. The only way to identify 1 of those as the real reason is to do a biopsy. So, if the culture is positive then after we treat it we will be doing a kidney biopsy. If it's negative then we'll be doing the biopsy sooner.
We're also seeing Dr. V sooner than we had thought. Dr. M said that he has a clear plan for how to proceed with treating these recurrent infections. We were going to see him on the 27th but they called today to move it up to the 20th.
Katie is pretty panicked about the biopsy because it's the unknown. I got some information about it today and she's going to call her camp kydnie pal to see if she has had one, and I'm going to contact another one as well. I told Dr. M that we would need to have someone from ChildLife there with her for the procedure. The sedation and prep are the same as the PICC line placement so that should be comforting for Katie but it's not.
We did get some really good news today. We got the letter and phone call from Make A Wish. Katie's wish to meet Corbin Bleu has been approved! The wish volunteer told me that she is 5th on the list of wish kids waiting to meet him. She's hopeful that Katie might get her wish in the next several months but obviously can't promise anything. This is definitely our bright spot right now.
I spoke to Dr. M. She is encouraged by the clean culture from LabCorp but she's not convinced and wanted a culture process by another facility. So I drove a sample down to the UMMC lab this afternoon. When that comes back if the volume of bacteria is 50,000 or greater she will treat the infection with the appropriate IV abx for 7-14 days.
Katie's creatinine is up to 0.94 which is a bit concerning and could mean a couple of things. She doesn't think that it's completely because of dehydration. It could be, like a mentioned yesterday, a toxicity to Prograf. Dr. M also said it could be some small level of rejection. The only way to identify 1 of those as the real reason is to do a biopsy. So, if the culture is positive then after we treat it we will be doing a kidney biopsy. If it's negative then we'll be doing the biopsy sooner.
We're also seeing Dr. V sooner than we had thought. Dr. M said that he has a clear plan for how to proceed with treating these recurrent infections. We were going to see him on the 27th but they called today to move it up to the 20th.
Katie is pretty panicked about the biopsy because it's the unknown. I got some information about it today and she's going to call her camp kydnie pal to see if she has had one, and I'm going to contact another one as well. I told Dr. M that we would need to have someone from ChildLife there with her for the procedure. The sedation and prep are the same as the PICC line placement so that should be comforting for Katie but it's not.
We did get some really good news today. We got the letter and phone call from Make A Wish. Katie's wish to meet Corbin Bleu has been approved! The wish volunteer told me that she is 5th on the list of wish kids waiting to meet him. She's hopeful that Katie might get her wish in the next several months but obviously can't promise anything. This is definitely our bright spot right now.
Thursday, March 12, 2009
Culture results and more
Well... We basically have more questions than answers at this point but since I said the culture results would be back today I wanted to post.
I spoke to Dr. M's nurse late this afternoon. The culture came back clean but Dr. M doesn't believe the result. The sample was dropped at LabCorp and we know that LabCorp has a threshhold below which they call a culture clean. In other words if a sample has only 50,000 colony forming units they may report the culture as clean, however we don't know if that number is 50,000, 60,000 or some other number. So Dr. M is thinking about what she wants to do and is supposed to call us to discuss that and the blood results.
Her blood results are a little funky. Her Prograf level is higher than they would like it to be and her creatinine is slightly higher than it was. It's possible that those two things are related and that she's actually developing a toxicity to Prograf. One of the possibilities to deal with that is possibly a change in that part of the drug regimen. There aren't any coordinating results that would lead them to believe she's in any level of rejection so that's a good thing but Dr. M wants to mull things over for a bit before calling us to discuss.
We're contemplating seeking out a second opinion on these infections, so if anyone who has found us here has any renal transplant experiences that they would like to share please feel free to email me at steamy4 at verizon.net
I spoke to Dr. M's nurse late this afternoon. The culture came back clean but Dr. M doesn't believe the result. The sample was dropped at LabCorp and we know that LabCorp has a threshhold below which they call a culture clean. In other words if a sample has only 50,000 colony forming units they may report the culture as clean, however we don't know if that number is 50,000, 60,000 or some other number. So Dr. M is thinking about what she wants to do and is supposed to call us to discuss that and the blood results.
Her blood results are a little funky. Her Prograf level is higher than they would like it to be and her creatinine is slightly higher than it was. It's possible that those two things are related and that she's actually developing a toxicity to Prograf. One of the possibilities to deal with that is possibly a change in that part of the drug regimen. There aren't any coordinating results that would lead them to believe she's in any level of rejection so that's a good thing but Dr. M wants to mull things over for a bit before calling us to discuss.
We're contemplating seeking out a second opinion on these infections, so if anyone who has found us here has any renal transplant experiences that they would like to share please feel free to email me at steamy4 at verizon.net
Tuesday, March 10, 2009
Broken Record
I so feel like a broken record but I know lots of people will be wondering if I don't post so I'm posting.
We went for blood labs and urine this morning. The blood results will be back later today and tomorrow (the prograf level won't be back until tomorrow) and the final on the urine culture will be back on Thursday. The sample didn't look like a sample that will come back with no growth. We have no idea what the plan is if it comes back with a higher bacteria concentration, I would assume they will treat it to protect the kidney but I'm not sure.
We made the appointment to see Dr. V for the end of the month. I have no idea what seeing him will accomplish but the appointment is made.
I'll update when I know something more.
We went for blood labs and urine this morning. The blood results will be back later today and tomorrow (the prograf level won't be back until tomorrow) and the final on the urine culture will be back on Thursday. The sample didn't look like a sample that will come back with no growth. We have no idea what the plan is if it comes back with a higher bacteria concentration, I would assume they will treat it to protect the kidney but I'm not sure.
We made the appointment to see Dr. V for the end of the month. I have no idea what seeing him will accomplish but the appointment is made.
I'll update when I know something more.
Thursday, March 5, 2009
Not so much
Tuesday's culture came back with less than 70,000 colony forming units of VRE. In English, she has an infection with the same bacteria as the last one. The volume of bacteria is kind of low so Dr. M doesn't want to treat the infection. She wants us to go back to every day irrigations with the acedic acid (we had gotten permission from Dr. V's office to do it just every other day after the first clean culture.) She wants to repeat the culture next week and she wants us to see Dr. V in a few weeks. Obviously Katie is really unhappy because the irrigations are painful for her. I have an email out to her psychologist who taught her some pressure point relaxation techniques, maybe she can give her some pointers to help her through, she's also a fan of aroma therapy and knows what scents to use for certain things.
So, that's where we are...
So, that's where we are...
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