4/8 part II

Now that John is back on the levofed to help maintain his blood pressure, he isn't stable enough for surgery to assess him for the peg tube and debridement. We will wait for a few days to see if John can begin maintaining his own blood pressure without the levofed. It's uncertain what this means. It is possible John has another infection that is affecting his blood pressure. Blood cultures have been drawn and sent to the lab; we will see whether the results indicate there is another infection. Even negative results don't completely rule out an infection; John's antibiotics may mask an infection. And, the steroids suppress body temperature so even though John's temp seems normal, it is possible that there is still an infection there. Patients on tube feedings can build up a high sodium level so John was getting a little bit of free water prophylactically to help avoid that. John's sodium level dropped with the free water so it was discontinued and now his sodium levels are almost normal. John has been dealing with low sodium for a while now. Our original treatment was to let me salt his food and then he was on salt tabs. So, it's not really a surprise that the sodium levels dropped. Let's end on a good note tonight. John is still doing well on the pressure support setting of the ventilator; the edema is gone; CMV numbers are down; there is no gvhd rash; the pneumonia isn't worse. Send good thoughts and prayers for John to be able to get off the levofed, that there are no new infections, and a special request for the recovery of brother of honey badger. John wants his brother to be better soon.

4/8

So, a correction. Patients often experience that positive pressure/decreasing blood pressure effect on the pressure support setting of the vent. Blood pressures typically rise on assist control; John has been doing just the opposite. A contrarian - who would have thought it... To keep his bp in a good spot (map of a least 65)John needed a pressor for about 2 hours; last night he needed it all night long; and today he needs it even on pressure support. I don't know how significant this is or what might be causing it; hoping to talk to the drs later and learn what their ideas about this are. Back on pressure support today; John looks very comfortable. A next possible step in weaning might be to lower the oxygen % and/or the pressure a little to see how he does. Right now he is still on morphine pretty frequently so we might not create that extra stress right away. That's it for now; sorry for leading you astray with yesterday's posting.

4/7

John continued his streak on the pressure support setting of the ventilator today. He has been able to comfortably tolerate that setting for 9-12 hours a day for the last 4 days while maintaining his blood pressure and oxygen saturation. At night, he goes back on assist control where the vent does more of the work and John can get a little rest. Curiously, John's blood pressure has dropped the last two nights while he has been on AC. Speculation is that when the ventilator is doing the work, it increases the pressure in the chest cavity pushing on the veins and diminishing the amount of blood they return to the heart; and that reduces the blood pressure. John has needed small, sub-minimal doses of the pressor levofed for the last two nights to keep his blood pressure up where it belongs. He doesn't need any help during the day while he is on pressure support. Not sure if this is going to delay a transition to intermittent dialysis which requires the ability to constantly maintain blood pressure; we will talk to the kidney docs and see what they think. Respiratory today said that John was moving a lot of air in his lungs. That's good; when the pneumonia was at its worst, there weren't a lot of air sounds. John had a lot of secretions yesterday which were removed with frequent suction. Today, his nurse pronounced that he sounded a lot less "junky" which I am convinced is a medical term since I have heard several nurses and doctors make that assessment. John's weight is back to 170; that was his weight when he was admitted to the hospital. So, while it is painfully thin, it does mean the edema is finally gone. John is alert more frequently for brief periods. That is great to see but also means he is more aware of his pain. Even though it is carefully managed with position changes and meds, it is clear he is often in pain. PT is still working on range of motion; and this week surgical trauma may evaluate John for a peg tube and for surgical debridement of a large and deep bedsore. If it's a go, John will be able to get more nutrition with less irritation and that should help the healing. The air mattress also helps as does the frequent turning. It's just hard to avoid skin break down when you're confined to a bed for weeks at a time. The night staff shaved off all of John's beard which must be much more comfortable for him. He looks like his old self with his ruddy complexion and black hair coming back. Thank you for the continuing prayers, good wishes, cards, pictures, anecdotes, and emails. We look through them together each day as I deliver your encouragement to him.

4/4

John had good days yesterday and today; he was able to comfortably be on pressure support for about 9 hours each day. This is a first small step towards weaning from the vent if he can remain comfortable on pressure support and eventually move to the trach collar. A first today was permission to have an ice chip several times an hour; John really liked that. It was the first thing he had to swallow for more than a month. Speech and swallow will be back when John is alert for longer periods of time. His pain med has been changed to morphine which makes him a little tired. Next steps may include insertion of a peg tube into the stomach or small bowel for feedings. Then the nasogastric tube can be removed which should make John much more comfortable. It will also permit bolus feedings so John can get some extra nutrition which is important for healing. When the trauma surgeons assess John for a peg tube, they will also assess John for surgical debridement of the bedsore which is deep and pretty extensive. For the medical people out there, it is at least a stage 3 decubitus meaning it penetrates the epidermis, dermis and into the subcutaneous fat layer. Surgical debridement with a wound vacuum would help it heal a lot faster than debriding with the santel cream. Surgical debridement will be painful but John will be appropriately supported with pain medication. The sores on John's legs are slowly healing. These steps could happen as early as this coming week. John is making and maintaining normal counts of white blood cells without growth factors. This is an indication that the bone marrow transplant is working. He still needs frequent transfusions of rbc and platelets but that is not uncommon for the kind of infections and complications he has. The edema continues to improve as fluids continue to be withdrawn with the continuous dialysis. Some great comfort measures are a consult with podiatry to take a look at John's nails and a beard trim under John's neck. He looks much more comfortable thanks to the nurses and staff. In spite of John's progress, there was sobering news today. John's overall prognosis is still poor. The statistical approximate chances of surviving the kinds of complications John has in multiple systems is about 10%. If John can recover, there is a substantial possibility of needing dialysis indefinitely. And, even the quickest recovery would take at least a couple of additional months. So, we need your prayers and good wishes more than ever. If you have any pictures or notes you want to send, I will be sure to share them with John. He does enjoy hearing from all of you.

4/3

Some good news is that the CMV numbers are all the way down to 300; they were at 1800 last week. No reports on the pseudomonas and fusarium infections although we are down to one antibiotic for each of them. A set back is that today John needs the ventilator to help with his breathing. He was on pressure support for 3 hours yesterday but couldn't tolerate more than that and was too tired today for pressure support. The bedsore is still terribly painful but it does have some granulating tissue around the edges; it is trying to begin healing. The speech and swallow team was here to begin their evaluation; they still have some follow up to do. PT is working a lot with John on range of motion and he is trying to help. John is pretty tired this evening, but the nurses tell me last night he asked to go home, this morning he said Good Morning to Donna, and this afternoon he was able to ask for a specific med (ativan) to help him get through the dressing change on the bedsore. He was able to communicate all of this by mouthing the words; he won't be able to talk until the vent can be capped. Thank you all for the cards, emails, pictures, and special gifts. I tell John all about them and all about you every day.

4/2

John was very alert this morning and trying really hard to communicate - in paragraphs, his usual form of communication! However, the lip reading is still nearly impossible for me so I can't report much. The night nurse says he mouthed he wanted to get out of bed and to go home. These both sound like very plausible statements from John even if we are not quite there yet while still hooked up to the ventilator and the continuous dialysis. Respiratory was able to put John on pressure support today; yesterday he was still too tuckered out for it. This is the beginning phase of weaning off the ventilator. Eventually they will be able to put a plug (there's a better technical term but I forget it) in the trach so he can talk and maybe even swallow. It will be great to be able to understand what he is trying so hard to communicate. Right now the spelling boards still require too much effort on his part but they will eventually be useful too. Once he can talk to us, there may be more to report than is appropriate for the blog but that would be a good sign of sorts too. Renal says since he had a hypotensive spell this weekend, they are not ready yet to try the intermittent dialysis but that will also eventually be in the future. They continue to pull off fluid through continuous dialysis in the meantime; the edema is much improved. No news yet on the new pseudomonas readings but the ceftaz has also been discontinued so we will hope that is a good sign. OT was in to see John yesterday and PT is scheduled to continue working with him. The Speech and Swallow team will also evaluate John but we may have to wait until he can be off the ventilator without distress like rapid respirations and rising CO2 levels. They did come to see him twice last week but he was too lethargic at that time for an evaluation. Hopefully his periods of alertness will continue; the down side of that is when he is fully aware he is also fully aware of the pain particularly of the very deep and extensive bedsore. I'm afraid the level of frustration will increase in direct proportion to the level of being wide awake but we will deal if that is part of the healing process. Visits from Michael and Meredith, and Zacchary and Sharon, and a very encouraging postcard from Seth and Rebecca were most welcome this past weekend. If you are inspired, please feel free to send a note and/or pictures to share with John until he is ready for visitors beyond the immediate family. That will be a while.

4/1

No April Fool's Day jokes here. John still has the pseudomonas infection and is still being treated with ceftab and amikacin for that; the vanco is being discontinued. For the time being, respiratory is giving him a bit of rest on the ventilator until that infection begins to clear. Respiratory is trying pressure support again around noon today to see if he can tolerate it. Lately, his respiration rate and CO2 levels increase when he is challenged so if he doesn't do well on the support setting, we will go back to the assist setting where the vent does more of the work. The speech and swallowing team will be back in action once John can be off the vent more. John is much more alert during frequent, short periods now that the CO2 levels aren't as high. The communication board is still a bit of a challenge but we might begin to get to the point where that will be useful which would be a true gift. Right now John mouths words in an attempt to communicate but I am not very good at lip reading. His nurse today did figure out that he was asking "how much" when she told him one of his current meds was tacrolimus. Great sign of John's cognition to recognize the name of the drug and to remember that the amount was frequently titrated to produce the correct amount of immune suppression; great work by Julie to figure out what he was asking! John's belly is better; his tube feedings have been increased to 70 ml/hour and he is absorbing them fine at that rate (which is very near the previous goal rate of 75 ml/hour). He is also being supplemented with minerals and electrolytes to help the healing process. It would be just great if the bed sore could start to heal a little more; that is a source of quite a bit of John's pain. All other systems working as well as they have in the recent past. Hope to be able to deliver good news about the psedomonas infection (which seems to be one of the primary concerns at this time) soon.