John's doctors were able to perform the bronchoscopy yesterday (Sunday) afternoon. John held up really well and the doctors were able to get several good samples and washes. Within about 2 days we should know if anything is growing and whether a specific organism can be identified so keep your fingers crossed and your prayers coming.
John's blood pressure is fluctuating a bit after the bronchoscopy; he is maintaining pretty well without meds but will receive a little extra fluid which should stay in the blood vessels to help increase his pressure a bit without adding much to his edema. The low blood pressure means not as much oxygen is delivered to his organs as should be so it is important to correct that as soon as possible. John has had several EKG's and echo cardiograms which have all been good.
The nurses have been able to pull off about a liter of fluid earlier today and that should help with John's swelling and sore skin. There will be a consult later today with a wound care nurse who may have some good ideas to help the skin not break down and to heal any sores he already has. And, he did get his air mattress last night so that will help too.
The CMV numbers are down 90% to almost undetectable. This is great news.
A nice surprise, one of John's great nurses from the bone marrow transplant floor is training in the ICU this week and is one of John's nurses today. He does remember her. He has been able to communicate a fair amount by nodding and shaking his head in response to questions and by facial expressions.
John is in a full out marathon of treatment and keeps climbing one big hill after another; amazing endurance and so much stronger than the average bear.
Monday, March 4, 2013
Sunday, March 3, 2013
3/3, early morning
John's nurse reports that she has been able to discontinue the blood pressure med AND begin pulling off fluid - and John has been able to maintain his own blood pressure! This is great news. The nurse is getting him to the point where as much fluid is coming out as is going in.
He received some platelets; we'll see what kind of a bump he gets out of them. No news on a bronchoscopy.
His skin is beginning to break down a little so he will get an air mattress today and a consult from the wound care nurses. His nurses are trying to get on top of this before it becomes a problem.
He is close to the target feeding goal and is maintaining good blood sugars with only a tiny IV insulin dose. He only has to be tested once every two hours instead of every hour now that the sugar level has been more stable; this is great because having his finger pricked still hurts and his fingers are pretty beaten up. Soon they may be able to discontinue the IV insulin, test once every 6 hours and compensate for any fluctuations with a small shot of insulin.
Long way of saying he has made tons of progress overnight!
He received some platelets; we'll see what kind of a bump he gets out of them. No news on a bronchoscopy.
His skin is beginning to break down a little so he will get an air mattress today and a consult from the wound care nurses. His nurses are trying to get on top of this before it becomes a problem.
He is close to the target feeding goal and is maintaining good blood sugars with only a tiny IV insulin dose. He only has to be tested once every two hours instead of every hour now that the sugar level has been more stable; this is great because having his finger pricked still hurts and his fingers are pretty beaten up. Soon they may be able to discontinue the IV insulin, test once every 6 hours and compensate for any fluctuations with a small shot of insulin.
Long way of saying he has made tons of progress overnight!
Saturday, March 2, 2013
3/2/13, pm
More good news! John has continued to do well today. His pressure maintaining med has been decreased and so far he is managing to maintain his blood pressure in a good range. The goal will be to very gradually wean him off of it; as long as he can keep a normal pressure himself, other fluids that are causing edema can also be withdrawn slowly through dialysis (that process has already begun very slowly). That will bring him a measure of comfort and help even more with his breathing. Right now the ventilator is doing all the work of breathing but over time, John will begin to take over more and more of the work himself. Those are all long range goals.
For the immediate future, the doctors are still discussing the costs and benefits of a bronchoscopy. John is currently on very powerful broad spectrum antibiotics and anti-fungals that seem to be effective against the infection. Finding the exact pathogen would permit the medical team to discontinue whatever is not of immediate benefit to him. That would decrease his long list of meds by at least one and it would lessen the chance of his organisms becoming resistant to last line meds available to treat infections. One of John's doctors mentioned today that there is a (small) possibility that the lung consolidation could be caused by something other than a pathogen - for instance, it could be gvhd of the lung. It would be unlikely and an unusual presentation (as a consolidation in the upper right lung) but not impossible. A bronchoscopy could yield the identification of the pathogen but there are decent odds that the sampling would miss the part containing the infectious organism and then we wouldn't be any closer to knowing what is going on. Bronchoscopy also carries risks of bleeding and of upsetting all of John's systems during the procedure. It's very difficult to assess the cost/benefit ratio. At this time it seems like the doctors are still considering it but they might put it off until tomorrow or even Monday. Another recent development is dialysis - it is continuous so it does not remove a lot of blood at one time and does give the nurses and doctors a lot of control maintaining his fluids and pressure while removing toxins and waste products from the blood.
John was moved from the surgical ICU to the medical ICU this afternoon. We are so grateful for the excellent care John received in SICU. Every single staff person, nurse and doctor were just wonderful and worked hard to answer all of our questions and to make John as comfortable as possible while performing some pretty invasive and painful treatments. Everyone in MICU is great as well. The main advantage of MICU is that John's doctors are stationed here so it is easier and faster for the nurses and doctors to communicate.
A big new development is that John began receiving food through a feeding tube tonight. Just a little to start but this is important. He hasn't eaten for a long time now.
John has started opening his eyes, is able to squeeze your hand, can nod his head yes and shake it no (it was great to see him shake his head no when the nurse asked if he had any pain), and shrug his shoulders. He manages to communicate even though he can't talk, write (he tried though), or use his hands very much. We shouldn't be surprised. He is happy to see his brother, Bob, who is visiting for several days and Zacc who drove up from Baltimore today.
Thank you all for your expressions of care and concern. John is still a very high risk patient and still has a long way to go but today has been a much better day.
For the immediate future, the doctors are still discussing the costs and benefits of a bronchoscopy. John is currently on very powerful broad spectrum antibiotics and anti-fungals that seem to be effective against the infection. Finding the exact pathogen would permit the medical team to discontinue whatever is not of immediate benefit to him. That would decrease his long list of meds by at least one and it would lessen the chance of his organisms becoming resistant to last line meds available to treat infections. One of John's doctors mentioned today that there is a (small) possibility that the lung consolidation could be caused by something other than a pathogen - for instance, it could be gvhd of the lung. It would be unlikely and an unusual presentation (as a consolidation in the upper right lung) but not impossible. A bronchoscopy could yield the identification of the pathogen but there are decent odds that the sampling would miss the part containing the infectious organism and then we wouldn't be any closer to knowing what is going on. Bronchoscopy also carries risks of bleeding and of upsetting all of John's systems during the procedure. It's very difficult to assess the cost/benefit ratio. At this time it seems like the doctors are still considering it but they might put it off until tomorrow or even Monday. Another recent development is dialysis - it is continuous so it does not remove a lot of blood at one time and does give the nurses and doctors a lot of control maintaining his fluids and pressure while removing toxins and waste products from the blood.
John was moved from the surgical ICU to the medical ICU this afternoon. We are so grateful for the excellent care John received in SICU. Every single staff person, nurse and doctor were just wonderful and worked hard to answer all of our questions and to make John as comfortable as possible while performing some pretty invasive and painful treatments. Everyone in MICU is great as well. The main advantage of MICU is that John's doctors are stationed here so it is easier and faster for the nurses and doctors to communicate.
A big new development is that John began receiving food through a feeding tube tonight. Just a little to start but this is important. He hasn't eaten for a long time now.
John has started opening his eyes, is able to squeeze your hand, can nod his head yes and shake it no (it was great to see him shake his head no when the nurse asked if he had any pain), and shrug his shoulders. He manages to communicate even though he can't talk, write (he tried though), or use his hands very much. We shouldn't be surprised. He is happy to see his brother, Bob, who is visiting for several days and Zacc who drove up from Baltimore today.
Thank you all for your expressions of care and concern. John is still a very high risk patient and still has a long way to go but today has been a much better day.
3/2
I'm sorry for the delay in posting but we just couldn't fit one more thing into yesterday. John has been pretty challenged with all of the procedures and interventions but the ICU care has been fantastic and he is beginning to pull through. The bronchoscopy had to be delayed; John's condition just wouldn't permit it. Dialysis was started to help pull some of the toxins and chemicals that interfere with platelet function out of the blood. It can also remove some of the fluid that builds up as a result of all IV the fluids he is receiving. That helps his breathing and can even relieve some of the edema that causes skin to break down. The dialysis has already helped; John's doc will do the bronchoscopy sometime this weekend, as soon as John's condition permits. That procedure will hopefully identify the culprit so John can get off some of the broad spectrum drugs he is on (they all have side effects) and just be on the things that actually will fight the cause of this infection. This may sound a little clinical so the good thing to take away from it is that John's condition has improved a lot in the last 24 hours and there is every reason to believe he is going to be able to have the procedures that give him the best chance for recovery. He continues to be amazing - and a "special case". Thank you for the outpouring of concern, prayers, good thoughts and help!
Thursday, February 28, 2013
2/28
Everyone please say extra prayers for John tonight. He has been transferred to ICU after spiking a fever and suffering several episodes of very rapid heartbeat last night, this morning and this afternoon. He is intubated and ventilated and that has already helped him resolve the rapid heartbeat on his own. He is scheduled for a bronchoscopy tomorrow morning and is getting an arterial line tonight. Those two procedures will provide information that will help the doctors target the most effective treatments. His medical team now consists of his bone marrow transplant team, an infectious disease team, and a pulmonogy team and the best nurses ever. They are all reasonably optimistic this is an acute episode that can be resolved relatively quickly. Prayers and good thoughts please.
Tuesday, February 26, 2013
2/26
It has been a non-stop day of IV meds, oral meds and treatments. At the end of this very long, tiring day and 4 hours of photopheresis, we found out the photopheresis treatment didn't work because the UV light bulb wasn't working. Really. So, after 4 hours of pumping out blood and treating it with uvedex (sp?), the blood was pumped back in. Since there was no UV light, the uvedex didn't bond to the DNA in the T-cells and so didn't do any good. If we have to look for a bright side in this mess, it is that John's wbc count is so low (0.7) that there may not have been many T-cells to treat anyway.
The infectious disease docs were here. The pneumonia is consolidated, not diffuse; it could be caused by bacteria, viruses (including the CMV although that kind of pneumonia usually is diffuse), fungus or even aspiration of some food or fluid. To figure out the culprit, he is consulting with John's transplant doc and the pulmonologists to see if bronchoscopy is a good idea. If everyone gives the ok, that will be one more procedure - still looking for silver linings... at least John would get conscious sedation. Too bad they can't do April's bone marrow biopsy while he is under.
John is still very tired, and weak, not eating much yet and has crummy counts - wbc 0.7, hemoglobin 9.1 and platelets 17,000. He has 2 crowns that have come loose and was planning to see the dentist to remedy that on Monday; that was before he was admitted to the hospital on Friday. Still making jokes with the staff though. Today during an examination, an infectious disease fellow asked him if he knew where he was. John answered yep, I'm in Hawaii, it's 1984, Reagan is president; the poor guy was getting worried but the light did eventually dawn.
The infectious disease docs were here. The pneumonia is consolidated, not diffuse; it could be caused by bacteria, viruses (including the CMV although that kind of pneumonia usually is diffuse), fungus or even aspiration of some food or fluid. To figure out the culprit, he is consulting with John's transplant doc and the pulmonologists to see if bronchoscopy is a good idea. If everyone gives the ok, that will be one more procedure - still looking for silver linings... at least John would get conscious sedation. Too bad they can't do April's bone marrow biopsy while he is under.
John is still very tired, and weak, not eating much yet and has crummy counts - wbc 0.7, hemoglobin 9.1 and platelets 17,000. He has 2 crowns that have come loose and was planning to see the dentist to remedy that on Monday; that was before he was admitted to the hospital on Friday. Still making jokes with the staff though. Today during an examination, an infectious disease fellow asked him if he knew where he was. John answered yep, I'm in Hawaii, it's 1984, Reagan is president; the poor guy was getting worried but the light did eventually dawn.
Saturday, February 23, 2013
Wood Cutting
Mike here. A year ago we learned Dad's leukemia had come out of remission, and I headed down for a Neffs visit. It's been an eventful last year. The search for donor continued and proved fruitless. But, Zacc and I were thrilled to be able to donate to Dad thanks to how far the bone marrow transplant techniques had come allowing two half matches to donate. Relatively, Dad flew through the transplant and now seems to be dealing with most every possible complication. It's a good time to take stock and think about how much has been accomplished this last year through courage, grit and love. Mom and Dad continue to face leukemia as one.
So what's with this video? Last February, Dad and I moved some cut wood from the edge of the hedgerow around the house and to the wood pile near the basketball hoop.
Cutting, hauling and burning wood has always been big for us. Mom can never be warm enough. I remember her wearing wool sweaters to August soccer tournaments. She has nightgowns with small holes burned into them where she practically sat on a stove as the chimney needle headed for the red zone. So a good part of our childhood was spent keeping the Neffs wood pile at the ready.
We'd go up to the Poconos for a weekend with an empty truck, and spend Saturday walking around as Dad picked dead trees to take down. He'd plan how he wanted it to come down and begin work with the chainsaw. As we got older, we enjoyed spending this time together and proving our new found teenage strength hauling the wood out Dad had just taken down. Seth being Seth couldn't wait to work the chainsaw himself and got around to it in his later teens. Zacc and I weren't as interested or as I like to think weren't as dispensable. But, I do remember one day as Seth and Dad had a meeting of the minds over which way to take a tree down, I decided to look at the sky. Still, I can lose myself in pretty deep daydreams doing this especially if I get to "twitch" my hands... long story. All of a sudden the tree came down a few feet from me and I snapped out of it, my eyes went down the length of the tree to Seth and Dad and base laughing. It really was all good fun.
Now, all I hope for this summer is some more time cutting wood with my brothers and Dad. We get done and head back to the cabin were Mom's got a nice big dinner ready and now our wives, children, and girlfriends are waiting as well. There's plenty of beer and bourbon to go around as we finish our meal. And then we go out on the lake deck with some more beer and bourbon to watch the stars, tell stories we all already know and listen to Johnny Cash, Loudon Wainwright III, Warren Zevon, Steve Earle, Townes Van Zandt, cousin Josh, and Kris Kristofferson among others.
Dad, we look forward to having you back on your feet, cleaning your chainsaw, and cracking jokes as we do all the heavy lifting. We know this last year has been tough, and I just keep thinking of Townes Van Zandt singing "To live is to fly, both low and high." We love you.
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