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.