Mike's Update

Mike ws doing well today and is still about at the same place as far as his lung congestiona and the night time vent weaning.  He had another round of tests and does not have any infections wich is great.  He is eating and drinking good too, if the hosptial could ever get his order right.  I guess he is paying the prcie for being so fussy.

I asked his freinds Amanda and Jay to try to pull together a group visit by his freinds since he seemed to be getting down at the lack of progress he was making.  Amanda really came through and has a goos sized group hitting the hospital tomorrow afternoon!  Mike doesnt know they are comming, so I really think this is going to boost his spitits a LOT.  Way to go Amanda. 

The ICU team is preparing to discharge Mike to a Specialty Care Hospital since he has really received all the care he can at the Shady Grove ICU and now really just needs the vent weaning and care for his Pnuemonia until it is gone.  Because at some point, staying in the ICU is more a detriment than not due to all these differetn "super bugs" people can contract there like CDIF, Septic Blood infections, MERSA, and all kinds of worse respritory bugs than what he has it makes good sense to move him to one of these facilities.  Unfortunately the best of the bunch are not close.  2 are in Baltimore and one in DC on Capitol Hill.  These are excellent facilities for specialty care and offer both Hospital care for the Pnuemonia, Vent Weaning Programs for that, Intense Physical, Occupational therapy and Wound Care.  So all of his needs will be addressed AND he can come home from these hospitals rather than go to rehab in addition to this.

I went to Johns Hopkins Bayview Care Center this morning and toured the facility and spoke to some of the staff.  It was very impressive.

I have an appointment at 10 tomorrow morning to go to University Hospital Medical Center, University of Maryland to tour their facilities and see what is offered.  These two places are rated very high nationaly.

Monday I visit the Specialty Care Hospital of Washington, DC.  They are very highly accaimed in all areas and as a bonus, every room at this facility is PRIVATE.  At the others, it is about 50-50 and your getting a private room is based on a special need you may have, ot luck of the draw. 
All of the hosptals allow Mike to roam freely as he is able and have many places/areas inside and out where he can go with visitors or just get out and about the grounds.

We'll see how it all goes.


I will update on the selection process and any eta on Mike's moving from one facility to another.
 
Red

Latest Update

Mike continues to remain the same.  He is still talking well, eating solids and only needs the vent during the evening.  This is good news of course, but we want to see improvement too, so he can get to rehab.  The plan now is that when he is stable in all other areas except the vent requirement they are going to have him moved to a Specialty Care Hospital.  Some of the tings that need to stablize are the secretions he continues to have.  For a time they seem to stop, but every so often they will kick in again and if not caught in time, could set him back again with his lung filling.  There is no real time table for this, just a wait and see.

The Specialty Car Hospital is still a full care facility but they are a step dopwn for a Hospital ICU Unit.  He would go there until he is weaned from the vent permanently and then to Rehab.  There are several facilities that are rated as excellent. For instance, Johns Hopkins and University Of Maryland Medical Center are reated #3 and #12 in the country for Pulmonary Medicine. They are both in Baltimore.

Other than that, they want Mike up in his chair at least once a day to help is lungs and to keep the status quo on everyting else.  His spirits are good, still, even though he is sick of the hospital and does at times have some "grey days" he continues to inspire and amaze me.  He never complains or whines or feels sorry for himself even with all the hardships he faces.

Red

Mike Comming Along

As you can see by the picture here things are improving!.  Mike got the tube out of his nose and has the peg in is stomach now and already his throat is better and he was drinking some fruit juice.  Talking is easier now too, and he talked with his sister Kim on the phone today. This picture was taken about 1 1/2 hours after the proceedure with the tube.  Except for the shiney face he looks prtty good.  They are still being cautious with him and keeping him on the vent at night just to be safe and I think it is a great idea.  The speech therapy Gestapo Lady has also lightend up on him since my argument with her 2 days ago and Mike is actually making better strides towards eating now that she let him get the tube removed first.  I'm not Dr., but it seems common sense would tell you it would be hard to swallow regular food with a feeding tube down your throat.  #$@!^**!!%@!

Red

Todays Update

I saw mike today when I brought down his chair. I also saw both Dr Saxina and Carevella. Mike was doing good but really tired. His numbers looked good too. I talked to the nurse and about the chair and how I get Mike into it but was a little concerned about all the things he is hooked up to and getting all that with him to the chair. I think they are going to wait at least until he gets the feeding tube out.


Dr Sax showed me his xray again today and he said it was a "smidge" better. Frankly it looked noticable better to me, but what do I know I guess. I said he and Caravella are sure he will eventually get over this but it ios just goingto be really slow. The reason is that fluid between his lung and chest wall. It is big enough to interfer with the lung fully expanding but too small to go in from the outside to drain, so it has to take it's course to dicipate.

His feeding tube is coming out of his nose and they are puting in a feeding peg which is a small tube that sticks out of his stomach and they can feed him throug that so the tube in his nose ant throat can come out which will help get rid of the really sore throat he has so he can eat. When that happens, the peg will come out.

So I hope by Friday he will be eating on his own and talking up a storm if everyting goes to plan.

Red

Today's Update

Mike has been doing good for the past two days and nights.  He has been able to talk with his "Passe Muier" Valve but the swallowing, although he can, is difficult due to the soreness of his throat. The Dr.'s have deciced put him on the vent only for th night time to prevent a relapse with the secretions filling the lung.  This is the CPAP version where it just supplies positive pressure to his lung so that no secretions can clog the opening to his lung and let it fill.  He is still breathing on his own and mostly with room air.  I see this as a positive thing and something I had hoped they would do the previous times.  It is great to hear Mikes voice after all this time.  Although down in the dumps he look good.  A special thanks to you who paid him a visit on Sunday.  It made his day.

Red

Unbelievable

Well I am sorry to have to report that Mike had another setback overnight,  His lung filled again and they had to put him back on the vent.  His lung was drained and he is pretty much back to where he was a couple days ago.  Still, the trach served it's purpose since they could do that without having to intbate him again.  At 6PM last night they were ready to start the swallowing tests and change the trach to the one where he can talk and the next morning, Wham!  Nobody seem sto be able to tell me exactly why the secreations still are happening. 

They took out his stent and cath from his origianl operation yesterday, so at least that is a step forward.

Mike is very conscious and alert now and could use a pick-me-up, so any of you folks who are local that might be able to stop bye over the weekend, i think it would cheer him up.

Finally...A Good News Update !!

I spoke to all the Dr's today and we certainly have come a long way since last Wednesday, actually even since Monday. First Mike is doing well.  He is completely alert now and with the exception of some pain in his neck and shoulder, which is nothing new to him he is good.  He is completely off of the ventilator and they have even removed the machine from his room.  He is completely on his own now breathing except for some oxygen which is hooked to his trach, but is the same as when they put the little hose thing under your nose jsut to give you a little extra.  The speech pathologist was coming in this afternoon to change the trach aperatus to a two way valve thing that lets him talk all the time. The goal is to get that revered completey once they are 100% sure he wont have any kind of relapse. The ENT is coming this afternoon to start doing the swallowing test with him and as son as they are confident everytihg is back to normnal he can eat, drink and take meds normally.  The plan is, when he is ready, to send him back to NRH for a short period to get completely healthy and while he is there to get more physical therapy too. This may end up as outpatient only, they arent sure right now.  I don't know what they are planning for a length of stay, but will soon.  When he will actually go there depends on his swallowing progress since you cannot be admintted there on intraveneuos meds or feeding, or assisted breathing.

Fingers Crossed!

Red

Mike - Progressing

I was with Mike today for most of the afternoon and he was doing ok.  The Drs say his lung is slowly improving and that he is doing weel when is is trach is not connected to the ventilator.  Its jsu a matter of time now.  Mike was having problems with is dysreflexia caused by the stent and catheter that is still in from his operation 3 weeks ago.  The Drs are going to take that out tomorrow I think and then he should only have to deal with clearing that left lung and then weaning back to talking and eating normally.  They are going to go easy with him, and not push to hard since he has been through so much.  They want to move him along gradually to be sure he keeps moving orward with no backwards steps.

Mike's Update

Mike had his tracheoscopy yesterday around noon and everything went well.  He was tires and sore but managed a smile here and there and asked for his legs to be streched.  I saw him around noon and he was still a little tierd and sore and a little frustrated that he still cant talk because they are giving him oxygen through the trach now.  They are going to unclip it for a few hours in the Am and PM every day to get his strength so he eventually can be off it completely. During the times he is off, he can talk, but it will still take a bit due to swelling and soreness from the Ventilator.  It's baby steps now, but the Dr did say his xdray looks a little better today and that he expects him to make progress slowly. 

I will be with him tonite to watch the Red Sox game so I'll let you know how he is doing in the AM.

Red.

Spoke to Dr,

The Dr feels that even though Mike has imporved some, he will still need the Trach temporarily to get better the fastest.  He feels he is still a little too far down the road from being able to completely beat this on his own.  And that letting him try it completley without assistance or leaving the Vent tube in longer would not be in his best interest.  I tend to agree,  the last t hing we want is for him to com eoff ond then go back like he had to over the weekend.  I soke to Mike about it abd he seemed to understand everything and did not seem upset about it. 

The Dr does not know if they will do it today or not, it depends on the surgeons schedule, but they will let us kmnow ahead of time so I can be here.  I dont see this as a set back, yet a faster more comfortable way for Mike to recover.  I think Mike sees it that way too.

Red

Still Seems to be improving.

Mike seems even a little better today.  All of the Nurses have said they think we can postpone the trachiostomy for now and try him on the cpap and bipap today and tomorrow and see if he csan hold his own.  If that doesnt show promise right away they will probably do it then.  This is all guesswork right now as the Dr has not been through on his rounds yet today.  Mike seems more alert and he now has a large card that he can hold and on one side there are pictures and the other has letters.  He can point to these with a straw in his mouth to help communicate.  This makes him feel better too.

Will update larter when we have more final decisions on todays plan.

Red

Talked to Doctor In Mikes Room on His Rounds

His Dr said they won't be doing the draining. The fluid has decreased enough since yesterday that there isnt enough to drain. His left lung now looks "pretty good" instead of being full as it was yesterday at 3, it is less than half now and confined to the bottom. The right is mostly clear.   They are doing the Trach but not until tomorrow.  The plan is to do that, clear him out and take him off the vent for a while and see how he does. A while is a few hours. During that time they will be assisting his coughing with compression coughs and I will be doing the same when they leave.  When he gets tierd they will just clip the vent onb again at his trach and help him out for a while,  This will continue until is is clear and can be on his own full time.  Most likely they will leave the trach in for a while in case he relapses after he leaves but eventually hope to remove it if everything goes well.  He is still a long way from leaving the ICU but seems to have made quite an improvement since I left yesterday afternoon.  They are also lestening his pain medication so he can wake up some for a few hours then they will give hiom a bit more to rest him.  They are going to remove the PIC line later today.

Red

Todays Update

I spoke to both Mike's doctors first thing this morning and they seemed confident that Mike was going to be ok.  Dr Caravelle said this was the best thing for Mike and that it will definately speed his recovery.  He was very positive about the trach and reassured me that it could be reveresed eventually and even if he had it for several months he would still be able to talk with it in and eat normally etc.  He will not have to have oxygen connected to it at all times, or even sometimes possibly.  It may just remaiun there in case he gets sick after he comes home so they will have easy access to his lungs. We will see.  Dr John said not to look at this as a set back but a progression in Mike's healing and recovery and that he will definately be happier and more comfortable this this than the ventilator down his throat.

I spoke to his nurse and she said she thought they may have postponed his proceedures.  I will find out shortly.  That may mean he has gotten a little better since yesterday but i am not sure.  More updates later today.

Red

Mike Has Regressed

Im sorry to say that Mike is still not improving, but is also not getting worse at this time.  The main issue now is the secretions, mostly orally, that keep him from progressing to a mask on his nose and mouth rather than the tube down his throat.  Since he can't have the tube indefinately, they are going to to a Tracheoscopy. They will put a small hole in his throat in the front so they can have easier access to suction his lungs when necessary and help him breath if needed without intebating him, (tube down the throat).  I think he understands what is going on and he seems to be ok with it.  I continue to talk to him and he responds with nods and sometimes even makes facial expressions, but he is pretty wiped out and of course heavily mediacted.  There is no timetable now, just day by day.  There is a 50 50 chance that the trach will not be permanent.  An while he has it, except for the first day or so he will be able to talk as long as the tube is not in the hole.  Knowing what I do now, I realy think this is the best and fastes way to get him better.  I will keep the blog updated a fequently as possible.

Red

Mike Update

Much better news this time.  Mike keepd doing well each time they lower the breathing tube assistance.  He was suctioned tis morning and the stuff comming out is clear now and that is very good.  His temp is down to 99 from yesterdays 102. More good news.

Yesterday the doc said he was really close to gettin gthe tube out. They are going to do the cpap today which is the forst step to getting him off the tube.  If he holds his own for most of the day they may think about taking the tube out really soon.

He is having a ct of his chest this morning to be sure there are no hidden pockets of secretions and if so they will get them.  Keep your fingers crossed for the tube comming out tomorrow.

Red