Friday, July 23, 2010
Induction Day 25 and a bit
We are moving to ICU. They are just making up the orders now. They will put in a second IV line when we are there to get more stuff into him faster.
Thursday, July 22, 2010
Induction Day 25
Quick blog as both Shelley and I are in the hospital with Nathan.
Dr Ali was in and indicated WBC was about the same with platelets at 38 indicating Nathan is becoming resistant to platelets. They determined to give Nathan double doses of platelets today. It is getting hard with Nathan's poor little IV to get three antibiotics, extra blood products and now albumin (over 4 hours) and something else... the nurses are having a tricky time determining what to go in and if it will interfere with the next item. A double port sure would be handy about now.
Dr Saczek, the pediatric surgeon came and examined Nathan. He thinks the condition is the same as Tuesday. He isn't any worse. He just needs to rest it and wait it out. Very unusual cases would require surgery but with Nathan we need to just wait it out. That was comforting for Shelley. We need some white blood cells to come back and help and that is going slow. Nathan's abdomen is getting more distended and the pain is almost all the way around.
Lauren who is a pediatric doctor said there is no sign of typhlitis and that he has a case of neutopenic colitis. My research is showing that they are one and the same so I'm not sure what to say about that right now. It has us very, very concerned. Nathan is not doing very well. Please continue to pray for us.
Dr Ali was in and indicated WBC was about the same with platelets at 38 indicating Nathan is becoming resistant to platelets. They determined to give Nathan double doses of platelets today. It is getting hard with Nathan's poor little IV to get three antibiotics, extra blood products and now albumin (over 4 hours) and something else... the nurses are having a tricky time determining what to go in and if it will interfere with the next item. A double port sure would be handy about now.
Dr Saczek, the pediatric surgeon came and examined Nathan. He thinks the condition is the same as Tuesday. He isn't any worse. He just needs to rest it and wait it out. Very unusual cases would require surgery but with Nathan we need to just wait it out. That was comforting for Shelley. We need some white blood cells to come back and help and that is going slow. Nathan's abdomen is getting more distended and the pain is almost all the way around.
Lauren who is a pediatric doctor said there is no sign of typhlitis and that he has a case of neutopenic colitis. My research is showing that they are one and the same so I'm not sure what to say about that right now. It has us very, very concerned. Nathan is not doing very well. Please continue to pray for us.
Induction Day 24 1/2
We had a very long and emotional day yesterday and neither Shelley nor I felt much like posting by the end of it.
Let's start with some GREAT news. Carter is a full match for Nathan's bone marrow and so he is an ideal donor! That made Nathan happy, his mom and dad very happy, and Carter happy and scared (which is perfectly fine). Carter is our deep thinker and he was mulling that over all evening and came up with some great questions. He is still more than a little nervous but his comment to Grandma Miller before bed was "I know why I was the perfect match, Nathan always wants to do what I'm doing and now I can help him" We have wonderful kids.
Now we just have to get through this damn setback before we can continue to move forward towards that bone marrow transplant. We have had a ton of doctors through to see Nathan, and Nathan has gone through a battery of tests and each of those more than once. There is more than one theory put forth but no one really knows what is going on. What we know so far...
- Nathan's pain in his abdomen continues and they are having trouble managing it. They had reduced his morphine but have upped it back up again.
- The ultrasounds and CT scans show a thickening in his descending large intestine (colon). This is either an inflammation or infection - they haven't agreed on that and don't know. What they are saying is that he essentially has Colitis right now.
- Nathan now has blood in his urine and stool - not a good sign but consistent with the colitis.
- The x-rays do not show any fluid build up anywhere, so no perforations or holes (good news)
- the are concerned about some heart beats as Nathan's ekg is showing some unusual signs in the delta waves, they are thinking wollf-parkinson-white syndrome. Unsure what that means to us.
- He keeps spiking fevers, yesterday he was 39.8 for quite awhile, the fevers were supposed to go away after the port was removed so this is troublesome.
- the port cultures have not grown anything yet, still time but that is troublesome as well. Did we remove it for no reason? Where is the infection then that the antibiotics are not handling it?
- Nathan still has one pseudomons strain in his blood. Found out yesterday that initially he had two, but now there is only one. That must be progress?
- Nathan is no longer responding well to platelet transfusions. Yesterday the transfusion took him from 22 to 38. It should be (and usually does) taking him over 80. They have to talk to the blood bank about special ones (whatever that means). Sounds like either they have to give him platelets from a single donor, or give him twice as much as what he needs.
- Nathan has started to lose feeling right by his waistband on his left side and now his back is hot and hard. Still consistent with the inflammation but we sure would like to be going the other direction instead of getting worse.
Shelley just phoned to say that they are likely moving Nathan to pediatric ICU. So much for turning the corner....
Let's start with some GREAT news. Carter is a full match for Nathan's bone marrow and so he is an ideal donor! That made Nathan happy, his mom and dad very happy, and Carter happy and scared (which is perfectly fine). Carter is our deep thinker and he was mulling that over all evening and came up with some great questions. He is still more than a little nervous but his comment to Grandma Miller before bed was "I know why I was the perfect match, Nathan always wants to do what I'm doing and now I can help him" We have wonderful kids.
Now we just have to get through this damn setback before we can continue to move forward towards that bone marrow transplant. We have had a ton of doctors through to see Nathan, and Nathan has gone through a battery of tests and each of those more than once. There is more than one theory put forth but no one really knows what is going on. What we know so far...
- Nathan's pain in his abdomen continues and they are having trouble managing it. They had reduced his morphine but have upped it back up again.
- The ultrasounds and CT scans show a thickening in his descending large intestine (colon). This is either an inflammation or infection - they haven't agreed on that and don't know. What they are saying is that he essentially has Colitis right now.
- Nathan now has blood in his urine and stool - not a good sign but consistent with the colitis.
- The x-rays do not show any fluid build up anywhere, so no perforations or holes (good news)
- the are concerned about some heart beats as Nathan's ekg is showing some unusual signs in the delta waves, they are thinking wollf-parkinson-white syndrome. Unsure what that means to us.
- He keeps spiking fevers, yesterday he was 39.8 for quite awhile, the fevers were supposed to go away after the port was removed so this is troublesome.
- the port cultures have not grown anything yet, still time but that is troublesome as well. Did we remove it for no reason? Where is the infection then that the antibiotics are not handling it?
- Nathan still has one pseudomons strain in his blood. Found out yesterday that initially he had two, but now there is only one. That must be progress?
- Nathan is no longer responding well to platelet transfusions. Yesterday the transfusion took him from 22 to 38. It should be (and usually does) taking him over 80. They have to talk to the blood bank about special ones (whatever that means). Sounds like either they have to give him platelets from a single donor, or give him twice as much as what he needs.
- Nathan has started to lose feeling right by his waistband on his left side and now his back is hot and hard. Still consistent with the inflammation but we sure would like to be going the other direction instead of getting worse.
Shelley just phoned to say that they are likely moving Nathan to pediatric ICU. So much for turning the corner....
Tuesday, July 20, 2010
Induction Day 23
A quick update cuz I'm tired.
Nathan had surgery this morning to remove his port. It went well, and while he was still groggy they did an ultrasound in the recovery room so that it wouldn't hurt his very pained left side. He had a fever before the surgery and still had it afterwards. It took about 5 hours for it to finally break at 3pm. The highest I had seen was 39.7 but then I headed back to work. The sent the end of Nathan's port line in for culture to see if anything grew - we hadn't heard anything back by 10pm.
The doctors are still confused on what is going on in Nathan's abdomen and we keep getting different answers - very confounding. First it is caused by pseudomonas, and then it isn't and is likely Typhlitis, then it is again, then it isn't again - each doctor from each area (oncology, resident, infectious disease and internal) seemed to have a different theory - who do you believe?? Nathan then had a CT scan at about 6pm tonight. It showed essentially the same as the ultrasound which is a thickening, or inflammation, in the lower large intestine. The plan, as of this evening anyway, is to continue on the current treatment course and they are going to add a third antibiotic which I forget the name of. Dr Ali called today the nadir and that Nathan would start getting better - we pray that he is right.
Another distressing issue is that they are having trouble with the pain management. The morphine that they were using to control his pain may also be causing issues as that one of the side effects of morphine is to shut down your bowels. That led infectious disease doctors to recommend that Nathan be removed from morphine. When we asked what they recommended to replace it with, they said that was up to Dr Al to figure out - not overly helpful. All they have done so far is to reduce Nathan from up to 5mg every 4 hours down to 2 mg every 6 hours. They may as well remove it entirely because those 2 mg last for about a 1/2 hour and then Nathan is in pain for 5.5 hours. It is very hard to tell your son, who is begging and pleading for pain medicine because it hurts so bad, that he cannot have it for another 5 hours. And this is a tough kid who actually gave blood peripherally and had GCSF injected into his arm today, both without flinching.
The plan to recover now is essentially bowel rest, run the three antibiotics, and give Nathan G-CSF to help the WBCs start coming back up. We have a video conference with Dr Lewis at 1:30 pm tomorrow but our line of questions have certainly be derailed by this latest hurdle. My short post is getting long, so I'll end it here.
Nathan had surgery this morning to remove his port. It went well, and while he was still groggy they did an ultrasound in the recovery room so that it wouldn't hurt his very pained left side. He had a fever before the surgery and still had it afterwards. It took about 5 hours for it to finally break at 3pm. The highest I had seen was 39.7 but then I headed back to work. The sent the end of Nathan's port line in for culture to see if anything grew - we hadn't heard anything back by 10pm.
The doctors are still confused on what is going on in Nathan's abdomen and we keep getting different answers - very confounding. First it is caused by pseudomonas, and then it isn't and is likely Typhlitis, then it is again, then it isn't again - each doctor from each area (oncology, resident, infectious disease and internal) seemed to have a different theory - who do you believe?? Nathan then had a CT scan at about 6pm tonight. It showed essentially the same as the ultrasound which is a thickening, or inflammation, in the lower large intestine. The plan, as of this evening anyway, is to continue on the current treatment course and they are going to add a third antibiotic which I forget the name of. Dr Ali called today the nadir and that Nathan would start getting better - we pray that he is right.
Another distressing issue is that they are having trouble with the pain management. The morphine that they were using to control his pain may also be causing issues as that one of the side effects of morphine is to shut down your bowels. That led infectious disease doctors to recommend that Nathan be removed from morphine. When we asked what they recommended to replace it with, they said that was up to Dr Al to figure out - not overly helpful. All they have done so far is to reduce Nathan from up to 5mg every 4 hours down to 2 mg every 6 hours. They may as well remove it entirely because those 2 mg last for about a 1/2 hour and then Nathan is in pain for 5.5 hours. It is very hard to tell your son, who is begging and pleading for pain medicine because it hurts so bad, that he cannot have it for another 5 hours. And this is a tough kid who actually gave blood peripherally and had GCSF injected into his arm today, both without flinching.
The plan to recover now is essentially bowel rest, run the three antibiotics, and give Nathan G-CSF to help the WBCs start coming back up. We have a video conference with Dr Lewis at 1:30 pm tomorrow but our line of questions have certainly be derailed by this latest hurdle. My short post is getting long, so I'll end it here.
Monday, July 19, 2010
Induction Day 22
well it was a partial day 22 today. Nathan still had his vincristine but they did not give the triple intrathecal therapy for fear of introducing the pseudomonas to his CNS. We know there is a window for him to get this treatment but we don't know how wide that window is yet. Nathan is not even in the room with the window yet so it has to stay open awhile yet.
Nathan is not doing very well today, lots of pain in his "tummy" and no appetite. It is even a big difference from yesterday. They put him on fluids this evening in order to get some nutrients into him as today he has had a cup and a half of soup and half of a juice - not very much for being on steroids for 22 straight days still. Being on a steady dose of morphine he is pretty lethargic, not fully awake often and not up for much when he is. Add to that the steady doses of Tylenol for his fever and it makes for a tired and groggy man. The spark still comes to his eyes occasionally but we sure wish those eyes would stay open longer...
The doctors are still trying to figure out all that is going on with him now. Nathan is showing once again what a tough kid he is as he puts up the consistent stream of new doctors wanted to prod and poke some more. They are convinced that one of the problems is that his port is infected and it will finally be removed about 9am Tuesday. The downside, of course, to having his port removed is that he will now have IV hooked up through his wrist and they want blood drawn daily which will have to come out of a needle in his arm - he won't like that much! It should take up to 48 hours after the port is removed to clear the pseudomonos from him and that should take care of the fevers. He would continue the full course of antibiotics after the port is removed which will be a week to two weeks of the piptaz and tobramycin after the port is removed so we are for awhile yet.
As for the pain in his abdomen, one of the things they are investigating is Typhlitis. The symptoms don't quite match up but they are pretty close. The biggest difference is that Typhlitis shows on the right side and Nathan's pain is on the left, but other than that he has most of the symptoms. It may be nice to know what is wrong, but that is definitely not one of the things that you want. We are praying that it is not this and not all of the doctors agree that might be this. Right now we are waiting to go for an x-ray, we were hoping to do this before Nathan got too tired and wanted to go to bed, that didn't quite work as Nathan is now sleeping in his wheelchair. At least Shelley has had a comfortable spot for awhile as she has taken up residence on Nathan's bed.
We had a great talk with Dr Strueby this evening who is a fourth year resident on the pediatric ward. She patiently answered our questions and since we had a doctor giving us well thought out answers we ran the whole gamut of questions asking about everything that has happened over the last week. Dr Strueby is one of the doctors that is not convinced it is Typhlitis though she won't rule it out. In addtion to the x-ray tonight we will be scheduled for another ultrasound tomorrow and possibly a CT scan as they keep looking for what is causing the problem. If you are confused right now thinking that it was pseudomonos that was causing all the problems then you aren't alone. That is what we were initially led to believe but they no longer think that that is the case.
To switch kids for a bit, Carter went to the first day of his day camp this week and he really enjoyed it. They went kayaking, wall climbing and swimming. When he and Justin came up tonight and he was telling Nathan about his day it seemed to spark Nathan up for a bit. Nathan was tired so we sent the kids (Johnathan and Ella has stopped by too) to the play room for a bit. Nathan slept some more and then wanted to go join them in the playroom. Before we could make that happen he was tired again and needed to rest some more. You could see that he really wanted to go see what the other kids were doing but his body just wouldn't let him.
Well I've typed all this while waiting an hour for x-rays. I sure hope they come soon as I'm running out of stuff that I'm willing to say. The last thing that I do want to say is that Shelley and I, and our boys, are immensely grateful for the continued support from family and friends. We love you all and hope that you will continue to pray for us. Good timing away we go....
Nathan is not doing very well today, lots of pain in his "tummy" and no appetite. It is even a big difference from yesterday. They put him on fluids this evening in order to get some nutrients into him as today he has had a cup and a half of soup and half of a juice - not very much for being on steroids for 22 straight days still. Being on a steady dose of morphine he is pretty lethargic, not fully awake often and not up for much when he is. Add to that the steady doses of Tylenol for his fever and it makes for a tired and groggy man. The spark still comes to his eyes occasionally but we sure wish those eyes would stay open longer...
The doctors are still trying to figure out all that is going on with him now. Nathan is showing once again what a tough kid he is as he puts up the consistent stream of new doctors wanted to prod and poke some more. They are convinced that one of the problems is that his port is infected and it will finally be removed about 9am Tuesday. The downside, of course, to having his port removed is that he will now have IV hooked up through his wrist and they want blood drawn daily which will have to come out of a needle in his arm - he won't like that much! It should take up to 48 hours after the port is removed to clear the pseudomonos from him and that should take care of the fevers. He would continue the full course of antibiotics after the port is removed which will be a week to two weeks of the piptaz and tobramycin after the port is removed so we are for awhile yet.
As for the pain in his abdomen, one of the things they are investigating is Typhlitis. The symptoms don't quite match up but they are pretty close. The biggest difference is that Typhlitis shows on the right side and Nathan's pain is on the left, but other than that he has most of the symptoms. It may be nice to know what is wrong, but that is definitely not one of the things that you want. We are praying that it is not this and not all of the doctors agree that might be this. Right now we are waiting to go for an x-ray, we were hoping to do this before Nathan got too tired and wanted to go to bed, that didn't quite work as Nathan is now sleeping in his wheelchair. At least Shelley has had a comfortable spot for awhile as she has taken up residence on Nathan's bed.
We had a great talk with Dr Strueby this evening who is a fourth year resident on the pediatric ward. She patiently answered our questions and since we had a doctor giving us well thought out answers we ran the whole gamut of questions asking about everything that has happened over the last week. Dr Strueby is one of the doctors that is not convinced it is Typhlitis though she won't rule it out. In addtion to the x-ray tonight we will be scheduled for another ultrasound tomorrow and possibly a CT scan as they keep looking for what is causing the problem. If you are confused right now thinking that it was pseudomonos that was causing all the problems then you aren't alone. That is what we were initially led to believe but they no longer think that that is the case.
To switch kids for a bit, Carter went to the first day of his day camp this week and he really enjoyed it. They went kayaking, wall climbing and swimming. When he and Justin came up tonight and he was telling Nathan about his day it seemed to spark Nathan up for a bit. Nathan was tired so we sent the kids (Johnathan and Ella has stopped by too) to the play room for a bit. Nathan slept some more and then wanted to go join them in the playroom. Before we could make that happen he was tired again and needed to rest some more. You could see that he really wanted to go see what the other kids were doing but his body just wouldn't let him.
Well I've typed all this while waiting an hour for x-rays. I sure hope they come soon as I'm running out of stuff that I'm willing to say. The last thing that I do want to say is that Shelley and I, and our boys, are immensely grateful for the continued support from family and friends. We love you all and hope that you will continue to pray for us. Good timing away we go....
Sunday, July 18, 2010
Induction Day 21
Dr.Williams from Infectious Disease visited us a little while ago to say the blood cultures taken from Nathan are still showing the pseudomonas but the bug is responding to the medications Nathan is receiving when tested outside of Nathan's body. They are convinced that the port and the line that is attached is infected with the pseudomonas. This bug apparently hides very well by attaching to plastic or metal and flattening so that medication does not affect it. Now Nathan will need to have surgery to have the port removed however we aren't sure when this will happen. Since the bug is still in Nathan's blood his spinal treatment tomorrow will be postponed. He is still to receive the vincristine so we are guessing the port will be removed some time after this treatment is done as it is our understanding that chemotherapy can not be delivered to children through an arm vein as they aren't large enough. The other items of uncertainty is whether a new port will be installed or whether he will have to wait and then have surgery again and the type will need to be determined again: (1) port like he has now or (2) a central line external to his body (our understanding is this is the type of line that will be required for the BMT) so discussions need to be had with Dr Ali and Dr Lewis. Dr Williams expects clear results as soon as the port is removed. We are grateful for the care Nathan has recieved and continue to pray that this will clear from his system.
Nathan's hair has started to fall out from the chemo therapy. His shirt was covered this morning, warranting a discussion again about it falling out. Nathan is such a tough little boy but his feelings are very sensitive. He started to cry and when asked why he was upset he indicated he was sad because the kids at school would make fun of him without hair. We assured him that it would grow back like the last time and that his friends would understand. Kids often speak their minds and don't think about feelings and that is why they are kids.
Nathan's hair has started to fall out from the chemo therapy. His shirt was covered this morning, warranting a discussion again about it falling out. Nathan is such a tough little boy but his feelings are very sensitive. He started to cry and when asked why he was upset he indicated he was sad because the kids at school would make fun of him without hair. We assured him that it would grow back like the last time and that his friends would understand. Kids often speak their minds and don't think about feelings and that is why they are kids.
Saturday, July 17, 2010
Induction Day 20
Nathan developed a fever again around 12:30am so blood was drawn for bacteria cultures tests both from his port and his arm before being able to receive tylenol. Around 2am the resident came in to examine him and ordered chest and stomach x-rays. The travelling caravan came to our room shortly before 4am. As we were sliding the slide under Nathan's back his response was "What is going on now?". They were quick and the machine they brought in was very child friendly fully decorated with bears. Nathan was up a lot between this with stomach/side pain and to go to the bathroom. Shortly before 7am a knock on the door woke my short nap to be told it was time to do blood work as we were late. I politley told him Nathan gave enough blood between 12:30 and 1:15am so he left. The fever came back around 10am so with tylenol for the fever and morophine for the pain Nathan is sleeping. He is quite the trooper but one more thing for him to fight was not necessary.
The bacteria in Nathan's blood is called Pseudomonas aeruginosa. From what I have read it is a Gram-negative bacterium that is noted for its environmental versatility, ability to cause disease in particular susceptible individuals, and its resistance to antibiotics. It orginates in the intestine causing infection. Nathan's bowel showed in his ultra sound to have a thickened wall indicating inflamation. The two drugs Nathan is on are used to treat this infection but how long it will take to see results I don't know.
http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa
Please pray for strength for Nathan to fight yet one more bug in his blood and that the medications he is on kills the pseudomonas aeruginosa.
The bacteria in Nathan's blood is called Pseudomonas aeruginosa. From what I have read it is a Gram-negative bacterium that is noted for its environmental versatility, ability to cause disease in particular susceptible individuals, and its resistance to antibiotics. It orginates in the intestine causing infection. Nathan's bowel showed in his ultra sound to have a thickened wall indicating inflamation. The two drugs Nathan is on are used to treat this infection but how long it will take to see results I don't know.
http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa
Please pray for strength for Nathan to fight yet one more bug in his blood and that the medications he is on kills the pseudomonas aeruginosa.
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