3/31

Happy Easter, everyone. We are here visiting with John. Michael and Meredith are leaving shortly to get home to Boston; Zacc and Sharon are here for the next few days. Sharon (graduating in May as a speech pathologist) brought along an electronic spelling board so I am anxious to see if that is easier for John to use to communicate with us. John is getting a little more vent support; he can breathe on his own but his CO2 levels build up and make him tired eventually. So, for now he is getting a little rest by letting the vent do a little more of the work. His distended belly problem appears to have been functional. He's been on so many drugs that slow down the GI tract, they have built up and will take a while to clear. In the meantime, his tube feedings have been increased and everything seems to be making the appropriate noises and working well. The antibiotics for the pseudomonas infection are still running. His doctor said he will probably discontinue those drugs tomorrow so his pseudomonas does not become resistant. The pressor was only on for a short time yesterday; it was turned off after less than an hour so that is not considered a relapse of any kind. At the same time, the nurses have begun withdrawing more fluid through the continuous dialysis and he is still doing fine maintaining his own blood pressure. The steroid dose has been decreased while the tacrolimus has been restarted. So far, no signs of gvhd as the levels of the immunosuppressant medications continue to be adjusted. John's doctors are careful to remind us (every day) that he is very critically ill. Still, he is much better than he was a week ago and I'm hoping to be able to tell you that he is even better next weekend. Please continue to keep him in your prayers.

3/30

Today started out well then went a bit downhill. John was awake this morning and got to see Michael and Meredith who have come to visit this weekend. John was on the trach collar for 7 hours today breathing on his own without the ventilator. As it turns out, when he gets tired, he isn't exchanging gases as well as he should. His CO2 levels went up and he was really knocked out. So, he is back on the ventilator on pressure support where he controls the rate of breathing but gets enough of an assist to help him breathe out the extra CO2. His pressure dropped quite a bit this afternoon so he is back on a pressor for a boost. The rate of fluid withdrawal through continuous dialysis was decreased and he received a 500 cc bolus of saline to help him get the pressure up. It is all working right now and he is awake again. The pseudomonas levels have increased quite a bit. Vancomycin is being restarted and additional antibiotics ceftab and amikacin are being added as well. Treatment with amphoterecin also continues for the pneumonia. The doctors feel dad's ability to breathe off the vent is a good sign that dad's original pneumonia is improving and they want to jump on this pseudomonas infection before it gets really established. John still has a distended belly but it is a little better with the reversed nasogastric tube and a med to reverse the sluggish effects of narcotics. A cat scan is still being considered to determine what is causing the blockage. No feedings until this problem is solved; in the meantime, John gets a banana bag every day - a liter bag of bright yellow fluid full of electrolytes and minerals. That's the news for today.

3/29

There are some updates from the last few days. Tuesday, John was off the vent for the first time; he was off 6 hours. Wednesday, he was off for 13 hours and then on pressure assist where he is doing most of the work for the entire night. He had a lot of secretions and needed a lot of treatments. That all translated into him being very tired; his CO2 levels were also higher than they should be. The respiratory tech thought maybe he had to spend a little too much energy this early in the weaning process so they backed off yesterday and put him back on assist control where the ventilator is doing most of the work. Today, he is on pressure support and if he handles it well, he will go on the trach collar (off the vent) later. The nasogastric tube had to be reinserted twice in the last couple of days so John hasn't been fed for a while. His belly is also distended so the new nasogastric line can be reversed to let the built up gases push out some of the stomach contents. This should help at least a little. The arterial line isn't working well; this is where the blood is drawn for arterial gases and it is also used to monitor his heart rate, pressure and respirations so it is important. All of his other attachments seem to be functioning for the moment. One of John's recent upper respiratory cultures grew pseudomonas. Infectious disease is satisfied with his coverage (amphoterecin and pociconazole) for now. This could be a hospital acquired organism;it doesn't seem to be causing any problems so no new meds are being added. That can all change later if he starts having fevers or other positive indicators. Vancomycin and meropenum have been discontinued. John's lungs sound better (for him) and clinically he looks like he is making progress. There won't be a cat scan for a while to look for visual confirmation of improvement. He was quite awake, cooperative and comfortable this morning. We looked at some of the short videos, emails, picture attachments,cards and photographs that many of you have sent. Thank you! John was able to concentrate and respond with nods. The team had to use a little ativan when they inserted the nasogastric tube a little while ago so right now he is asleep. Renal is happy with John's abiity to maintain his pressure off medications for many days now and with his general improvement. For now, they are continuing the continuous dialysis but will reassess on Monday to decide if he is ready to try the intermittent dialysis. PT has been working on range of motion with John for the last several days; it is possible to envision a day in the future (not the immediate future) when John could be out of bed in a chair. The CMV numbers have started to climb again; they went from ~ 1100 to 1800; John is on foscarnet every other day so we'll see what, if any, adjustments need to be made. All in all, I'm happy to submit a pretty good report for the last couple of days. Have blessed holidays and please keep sending your good thoughts and prayers.

3/26

Today is my(Lynn's) birthday. Not putting a narcissistic spin on the blog; just letting you all know I received the best possible gift today. I'm with John and it has been a remarkable day for him. I might remember more if I do this in some kind of order, so we'll go from top to bottom. John is off some of the antibiotics and isn't having any fevers. He is still on amphotericin and posiconazole for the pneumonia. The doctors considered replacing the pociconazole with voriconazole but were able to add some higher fat content to John's tube feedings (which is necessary to absorb the pociconazole) so that med change is not required. His feedings are back up to 75 ml/hr; he is tolerating and absorbing them well. This is important because he needs good nutrition to assist healing. The nurse was able to use ice water and suction to moisten John's mouth for the first time today. Up until today, they were using a moistening lotion which they still use for mouth care about every 2 hours but the ice water has to feel better than lotion on the tongue a lips. And he can now stick his tongue out on command (but isn't sticking it out at us all the time). His lungs sound a little better; there are lung sounds in the lower lobes. For now, they are crackles but that is better than nothing. John has been on the assist control setting of the ventilator meaning the ventilator is doing all the work of breathing (except when John overbreathes it). Yesterday, they put John on pressure assist for several hours; on this setting, the ventilator provides a small amount of pressure but John controls the rate and most of the work of breaths. This morning, John was on the trach collar for almost 6 hours. That means he was completely off the ventilator breathing humidified air with 50% oxygen all on his own without any help from the ventilator! This is remarkable progress. Each day they will increase the time John is off the vent; so if all continues to go well, he has begun the process of weaning. For the vent techs out there, his O2 setting is 45% and the peep is 5. The continuous dialysis is still working and John's kidneys are working a little better on their own. Some of the extra fluid has been pulled off; that combined with the reduction in pre and post treatment fluids have noticeably decreased the edema. He is still leaking through his arms but it is a bit less. John's liver enzymes show that his liver is working better too. The bedsore is pretty bad; it is being debrided with a medication. The wound care nurse recommended the addition of some wet and dry dressings to pull the drainage out better so that will be added to the list of procedures 2x/day. The leg ulcers are getting special dressings, they're not too bad, and at least one is getting better. The nurses are working on getting softer booties that fit better to help prevent drop foot and keep John's legs properly aligned. Consults are in for PT and OT; anything they can do will be just great. John is wide awake and fully cognizant of everything going on. He has been off pain meds for most of the day. I'm sure I'm forgetting something but you get the idea that tremendous improvements have occurred in the last 24 hours. Honey badger indeed! (Check out the you tube video if you haven't seen it yet and decide for yourself what traits they have in common.)

3/25

Spring is coming in like a little lion in Phila this morning. Some wet snow and rain mix here; looks like it will be a grey day with improving weather for the rest of the week. That might be a metaphor for John. He had a bit of a grey day yesterday with elevated (but not dangerously high) heart rate, blood pressure, and respirations. He had a more restful night which will hopefully continue with improvements for the rest of the week. For now, rethestatus of John's pneumonia, ventilator and dialysis remain pretty much status quo. He has made significant progress in several areas. The rash is gone; the CMV numbers are down; he doesn't need pressors to help him maintain his blood pressure; his temperatures are normal; he is awake and can follow simple command and answer yes/no questions; he isn't getting as many fluids so his edema can begin to improve. There are no worsening issues now; that alone is good news. Today a third lumen may be added to John's picc line; that will make it easier for him to get all his meds and blood products. Possibly a bronchoscopy will be scheduled to check for anything new that may be growing. From John to all his gardening friends out there, enjoy the onion snow today.

3/24

A quietish night. John did need some pain meds and the continuous dialysis clotted off. That is a common problem with continuous dialysis and it has happened to John several times before. It will be restarted later this morning. This morning he was a little tired (probably from the pain meds) but is getting more alert now. He is still maintaining his own blood pressure without pressors and his oxygen assist has been dropped from 50% to 45% and so far he is able to maintain his oxygen saturation at that level of assist. These are two improvements. Here is an example of how much water weighs. John weighed about 170 when he was admitted a month ago. Today he weighs 203. That's a result of all the fluids he has been getting and the inability to withdraw much of it because of blood pressure drops.

3/23

We had a homecoming last night; not in an alarming way. John was transferred from the MICU (medical ICU) to the BMT (bone marrow transplant unit). BMT will be able to support all of John's needs - blood pressure support, continuous dialysis, ventilator - and his care plan will be created by the team of bone marrow transplant doctors and nurses now. This floor really is designed more for long term care than an ICU so it seems to be a win-win for everyone. Many thanks to the great ICU teams (surgical and medical) that have taken such good care of John up till now for getting him to this point. And, so happy to be reunited with all of our great BMT team. John had another rough spell last evening in the ICU of high heart rate, elevating temperature and respirations, high blood pressure. Maybe getting jostled around in the move helped... once he was settled in BMT, his heart rate, blood pressure, respirations, and temperature all came down to good ranges. The nurses were able to take John off his pressor and even begin to slowly withdraw some fluid; he did need a couple of doses of pain meds, especially when they were trying to start an IV to get more places to deliver all the meds and blood products John needs. It wasn't possible to get the IV started so there will be some discussion about whether a second picc line is possible. At least then, he wouldn't need to be stuck; he is leaking a fair amount from his new punctures. He is getting a cat scan now to see if there are any changes in the pneumonia. John is frequently awake for brief periods now. He can open his eyes and focus, he recognizes us including all of the BMT nurses, staff and doctors we came to know so well in John's previous stays. He had a pretty emotional reunion with Sherene this morning; last time we were here he insisted she and her son (violinist) attend John's nephew's next Philadelphia concert and he will want to make sure they do. John can also nod his head, blink and he even was able to squeeze our hands just a little bit this morning. Toe wiggling and sticking out his tongue are the next milestones. Once he is able to stick out his tongue on command, we might begin to see a lot of that action - even when we are not asking for it. For the immediate future, he won't be able to talk and it may take a while to regain the strength to use the alphabet board for communication. John is still extremely critical with lots of problems that are difficult to resolve and that, if resolvable, will require extensive recuperation. I am hopeful he will get his wish to spend some time on the deck this summer - maybe even in the hammock. Please keep up the prayers, good wishes, incantations, long distance hugs and whatever else your spirit moves you to offer on his behalf.

3/22

Things continue to ... change. Yesterday John was off medication to keep his blood pressure up; he was changed from continuous dialysis to intermittent dialysis; and, the nurses were able to draw off some of the extra fluid causing his edema. Every one of these steps can cause blood pressure to drop so John's ability to tolerate them and maintain his own pressure was a major step forward. It all caught up with him later; his pressure did crash; and his heart beat went dangerously high last night and again this morning. The docs were able to control it with meds and he will go back on continuous dialysis sometime tonight but it is a step backward. His pneumonia is unchanged; his fusarium is resistant to the med he has been receiving so another antifungal has been added. He is having low grade temps so all of his antibiotics have been restarted. Some good news is that his cytomegalovirus numbers are down from 5000 to 1000; normal is about 100 but that is still a great improvement. Without the sedation, he is opening his eyes a lot and is able to focus but is not able to communicate. I am telling him about all of you but mostly am encouraging him to rest and gather his strength. He has a lot of challenges ahead.

3/21

John had an up and down night. His blood pressure kept moving around so he is back on the levofed for a while. The arterial line whose accuracy was always very dependent on his hand being hyperextended and rotated outward was removed; a new one was started on the right side. That's good because its position for accurate readings is better; they were able to put it in with one try; it tracks his temp, blood pressure, respirations/minute, and heart rate to help determine treatment and meds on a real time basis; and,it can be used for blood samples so he does not have to be stuck. John started a little temperature but it was brought under control with some tylenol and by removing some blankets. He is off sedation but will still be groggy while he continues to receive pain meds; he can't tell us when he needs them but his blood pressure and respirations do a good job of communicating when he is in pain. He is a tiny bit more alert at times which is an improvement and probably due to the removal of sedation. For right now, he'll be in some significant pain from the tracheostomy and nasogastric tube insertion yesterday as well as the edema, skin break down, and weakness and postural discomfort from being bed bound for so long. The nurses and respiratory are great about cleaning and moisturizing his mouth regularly but even so, all the mouth breathing dries things out and will be very distressing; that was one of his biggest complaints just before he consented to the intubation and ventilation 3 weeks ago. For some better news, he is able to receive nutrition again now that the nasogastric tube is in place. We'll take what we can get and hope for a peaceful day for John to begin some more recuperation. Thank you for all your prayers and good thoughts for his comfort and recovery.

3/20, Part II

The surgical resident inserted John's nasogastric tube easy-peasy this afternoon. Now he can get his oral meds and food again. All in all, a good day.

3/20 - the first day of Spring

John's tracheostomy has just been successfully completed.  He still has a little extra sedation from the procedure but he looks comfortable and his breathing looks more regular and less labored.  The medical staff say a trach is more comfortable than intubation and he certainly does look more relaxed.

The long term goal will be weaning from the vent.  This is most likely a multi-week process that may be finished at a special weaning facility outside the hospital once some of his other underlying issues are stabilized.  The medical staff say weaning off the trach is easier and less anxiety producing than weaning off the intubation tube and let's all hope and pray that's right in John's case.

The immediate short term goals are getting John off the blood pressure supporting med (levofed is the pressor he has been on) and moving from continuous dialysis to intermittent dialysis several times a week.  Once he can maintain his own blood pressure continuously without medication support, renal can begin working on transitioning him to intermittent dialysis. 

One reason John needs blood pressure support is the depressing effect pain medication and sedation have on his blood pressure.  The sedation and pain meds should be able to be reduced and eventually discontinued on the trach.  Without the sedation and pain meds, he should be better able to maintain his own pressures.

John has tremendous edema.  He gets lots of fluids as meds, pretreatments, and tube feedings.  He gets extra fluids sometimes to help him maintain his blood pressure.  If he can start maintaining his own blood pressure without those extra fluids, some of that the fluid causing his edema can be drawn off through dialysis.  That would help very much with his comfort.  He has a skin tear on his right arm where the skin just tore open because it was so distended. Both of his arms are leaking substantial amounts of fluid through the skin - they are supported on absorbent pads which are changed regularly.

John's rash has cleared up so his steroid dose has been reduced by half.  Instead of 50 hydrocortisone IV, he will be getting 8 mg methylprednisolone three times a day.  This will reduce his immunosuppression and help him fight the pneumonia but it also can make him more susceptible to a reoccurrence of the gvhd.

His CMV numbers are still higher than they should be so treatment with foscarnet continues. That drug is kidney toxic. Hopefully, the reduction in steroids will help his own immune system assist the foscarnet in getting that infection under control.

John is on a very strong antibiotic but two of his other antibiotics - vancomycin and merepenum - have been discontinued.  He is still tremendously susceptible to infection but his current wbc count is about 7 so that should help.  Tacrolimus, the immunosuppressant drug required to keep his new immune system from causing a full blown case of gvhd, lowers his ability to fight infection.  The good news is that only one infectious agent ever grew out of all the blood and bronchial tree testing he has had.  The bad news is that was fusarium - a very difficult to treat fungal infection.  Anyway, that is being treated and hopefully he will not develop any new infections.  It is good for him to get off meds as soon as it is safe.  They all have side effects that are not good for him.

These are the major issues that have to be addressed one step at a time but the tracheostomy should help get this process underway.  Now we will be waiting to see what kind of progress he can make in the next several days.
As always, thank you for following along and for your good thoughts and prayers for John. 

For the first time in a long time, the sun is shining and the temperatures are mild on this first day of spring in Philadelphia. 

3/19

John had an uneventful and what seemed to be a fairly comfortable day.  He was evaluated for the tracheostomy which is now scheduled for tomorrow as long as the platelet transfusion he will receive before then get his counts high enough.  Confidence is high that all of those details will work out.  All of the medical folk affirm that he will be much more comfortable and that weaning from the ventilator will be easier with a trach than intubation.  So, say an extra prayer tonight and tomorrow for John.  The odds for a recovery from this pneumonia are still stacked against him but every small step forward he can take may help him beat the odds again.  Today, John's oncologist said some patients just seem to have 9 lives and maybe John will be one of them.  We all believe that - especially tomorrow, the first day of spring.

3/18

John had a pretty good day and at about 5:30 pm the recommendation was for a tracheostomy for tomorrow as long as the platelet count is safe enough for surgery.  This will give John more time to continue on the ventilator while he tries to continue the progress he has made beginning late last week. 

This evening John is having some trouble with rapid breathing; he is trying to breathe faster than the ventilator.  This is probably because his pneumonia limits the amount of oxygen and carbon dioxide his lungs are able to exchange making him breathe faster and more shallowly which still doesn't accomplish the goal of exchanging gases well.  The doctors and nurses are working with a variety of meds and vent settings to help John synchronize better with the ventilator.  (I know I have mentioned this before but it bears repeating that the doctors and nurses here at Jefferson are fantastic.)  I don't know what effect, if any, this problem will have on whether there will still be a recommendation for a tracheostomy tomorrow.

Please continue your prayers for John to continue to respond to all of the medical care and concern from friends, family, colleagues, and students. I relay your comments and emails to him whenever you send them.

3/17

Happy St. Patrick's Day, everyone; I know John wishes he could be sharing a green beer with you.
We did have a real scare earlier this week but John took a day or two to pool all of his resources and has made some important improvements since then.  He is maintaining his own blood pressure and oxygen saturation and these are both very important for getting off the ventilator.  I feel like I have told you this before but this time, it has been for an extended period of time and the medical staff evaluate it as a definite improvement in his condition.
John has reached a (good) plateau and also pretty much the limit for the length of time he can be intubated.  If he remains at this level or improves some more, treatment on the ventilator can continue with a tracheostomy.  Platelet counts are still low, as they have been for such a long time now, but he is getting transfusions as preparation. 
The doctors, nurses and we are all feeling much better; I hope this brief update leaves you feeling better too.  There is still a very long row to hoe here but John has a fighting chance and a history of beating the odds :)

3/14

John's overall status remains unchanged but there is a definite upward trend.  Many small steps forward today - he can maintain his oxygen with less help from the ventilator.  He can maintain his blood pressure on very low doses of medication.  He can open his eyes, blink and squeeze your hand on command.  The rash looks improved.  He is able to absorb his food and meds again. 
Thank you for all of the prayers and positive thoughts; please keep them coming.

3/13

Lots of complications yesterday but the tiniest glimmer of improvement today.  John's fevers have broken and he needs less oxygen support.  Please keep your prayers and positive thoughts coming.

3/11

Another hard day for John complicated by the move of all ICU patients to another floor of the hospital.  John spiked a fever this afternoon.  More blood cultures were drawn to make sure he is not brewing a new infection now that his antibiotics have been discontinued.  His arterial line was also withdrawn as a possible site of infection.
He is experiencing even bigger swings in his blood pressure which dropped dangerously low today.  He is back on medicine to help control it.
Scans show the pneumonia may be worse or else his wbc and immune system are waging an immune response.  No way to tell.
The rash isn't infectious; it could be a reaction to one of his meds or a return of gvhd.  Once again, no way to tell by looking at it.  Now that some of the meds have been withdrawn, we just have to wait to see if it disappears on its own.
He is able to maintain his oxygen levels better today.  We'll hope for more improvements tonight and tomorrow.

3/10

Maintenance is the goal for John right now.  He is having a lot of difficulty consistently maintaining his blood pressure and treatment varies between extra fluids and meds that will constrict blood vessels.  He has also had some trouble maintaining his oxygen saturation.  Respiratory therapy and the nurses vary the percentage of oxygen and the pressure assist to compensate for whatever John can't do for himself.

The doctors have tried lots of medications for comfort while the breathing tube is in.  The goal is to be asleep but able to wake up to follow simple commands like squeeze my hand when roused.  John hasn't been able to do that since Thursday.  The drugs may be hanging around longer than they should due to slowed down functioning of major organs like kidneys and liver.  If that is the problem, the drug excess can also depress breathing and pressure.  So, for now, all of those meds have been removed and replaced with antivan as needed.  John is still not waking up so it is pretty likely the original meds are hanging around and still affecting him.

Some of the meds that are not targeted at fungi have been removed.  It will be interesting to see if his rash goes away now.  If it does, that will mean it was a medication rash which is preferable to the return of gvhd.

So, thank you for the prayers and good thoughts; keep them coming.  John is far from out of the woods just yet.

3/9

Happy to report that John had a stable night.  The first goal is to get him off continuous dialysis and onto regular dialysis.  That can't happen until he can maintain his own blood pressure without meds.  So far, so good.  Regular dialysis removes a lot of blood at once and can drop your blood pressure so we are not ready for that yet.

Very slow progress on breathing on his own without a vent.  He has to be able to maintain good oxygen saturation with reduced levels of support.  They have begun slowly reducing his extra oxygen and pressure to his lungs but that is one and a half steps forward and one step back.  He is doing a little better in that department than he was a couple of days ago.

John has a bit of a rash which could be caused by a lot of things including some of the strong meds he is on.  Dermatology is checking into it.

He is pretty sedated while going through all of these challenges but I am saving all of your messages and cards to share with him when he is doing better.

Happy to have better news to share from here in the burrow.

3/8

Yesterday was a very bad day for John with involvement of every system.  He finally had a lot of wbc which were mounting a strong immune response causing all of these problems.  Today he is having a better day and making some progress maintaining his own blood pressure and oxygen levels.  If he can do this consistently, these will be the very first small steps toward getting off the ventilator; he has been on the ventilator for 8 days now.  Say prayers.

3/6

This afternoon we got the diagnosis we did not want to get.  John's infection is most likely fungal - aspergillus and/or fusarium.  These are difficult infections to treat and the med he is on, amphotericine, is very hard on the kidneys.  No sign of fusarium lesions so far so let's all hope the med is working and John can get through this without any more major complications.

3/6 early morning

just a quick report - rbc is down to 6.8 so John will get some blood today.  Lots of good news though - there is still no elevated temperature this morning; the nurses have been able to decrease the assist he is getting from the ventilator both in terms of how much oxygen he is on and how much help the ventilator is giving him to breathe; his swelling is dramatically down, at least in his feet and ankles which were huge; and he was able to communicate 2 important questions about his treatment even though he can't talk.

I'm still waiting to hear from the docs but things are looking much better to me this morning; just wanted you all to know.

3/5

John had a long day with many alert periods yesterday and a rough night where he couldn't really get comfortable to sleep well.  The nurses eventually gave him some meds to help with pain and sleep and bumped the oxygen up to 70% to help him get enough in his blood.  Today he has been catching up on his rest; hoping he gets lots of rest tonight too.

The pathology reports came back mostly negative.  Maybe the biopsies just didn't include the problem tissue, or maybe all of the antibiotics, antifungals, and anti-viruses have sort of sterilized the area, or maybe the fevers are caused by something besides an organism.  There is an indication of a fungal infection (but not which one) so an extra antifungal was added today.  The docs will see how John responds and if he starts to feel better, they will begin removing some of the meds.

The blood counts were holding up this morning but they fell by the afternoon.  John is getting some platelets tonight.

John is getting more food through the feeding tube and seems to be digesting most of it. His blood sugars are high enough to require very small doses of insulin; at least now he only has to be tested once every 6 hours instead of every hour.  He winces even in his sleep when he has to have his fingers pricked for blood.  We'll be so happy when he doesn't have to do that anymore.

The CMV numbers are down too which is more good news. 

Still no signs of graft v host either which is also great news.  We can't do photopheresis while using that port for dialysis; but, so far, so good. Let's hope it stays this way because he already has more than enough to deal with and because if they needed to do both they would have to put in another port.  The tacro (used to suppress the immune system and gvhd) was restarted today at a lower dosage.  And, the steroids (also used to combat gvhd) were changed to an IV form.

Dialysis continues to go well and the renal docs are happy with kidney function.  Today more fluid has been added than drawn off and John has a lot of edema; it will be good when we can draw more fluids off again.  It will help with his skin sores and with comfort in general.

Renal docs are happy with that function and believe normal activity will return when he is off the drugs like foscarnet which are hard on the kidneys but necessary to treat the CMV. BUN and creatinine numbers are good.

John has slept almost all day which he needed and I hope he sleeps all night too without spiking another fever. Think that about covers it for today; let's hope for an easier tomorrow.

3/4

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.

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!

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.

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!