John is getting discharged Friday

Hi journaly peoples!    

The doctors came in John's room tonight and told him he was going home tomorrow (Friday).  They took two X-rays of the pneumothorax today, decided it wasn't that large, and said it would reabsorb itself.  I hope they know what they are talking about.  I am nervous about John returning home, but there is nothing I can do about it.  I believe the hospital tries to push you out at the earliest date possible it seems.  I am not sure why, but that has been the way it seems to operate.  I am also wondering why they are sending John home without knowing what kind of pneumonia he has.  The cultures have not had time to grow yet.  But they said that John would be OK, they would just send him home on oral antibiotics just like the ones he has been getting through the IV.  One of the nurses said that John should still have the pneumonia for weeks and weeks.  That it hangs on for a long time.  I had mentioned to Dr. E. that perhaps we should go over to Hope Lodge for a day, and he said he was not comfortable with John being at Hope Lodge with pneumonia.  Yet he is discharging him to home.  Wow.  Well I guess I have to trust the doctor knows what he is doing.  Anyway, Dr. E. set up an appointment for John in two weeks with Dr. Claxton.  I feel good about that.  Dr. Claxton can check John out.  And at that time he can decide what he is going to do about John's Hemolytic Anemia. 

While I am a little nervous, and wonder if we will end up back here, in another sense I am relieved.  I wanted to be home for Thanksgiving.  And Christmas.  I hope we get to stay home through the Holidays!  John will be sick for awhile and will have to lay around a lot, but at least we will be at home, and if he does do OK there, then it will be good, because it will be familiar and nice surroundings. :)  And I have so many things I want to work on at home, both things I have to do AND some fun things!  Now I am getting excited!  Ahhhh, to have a normal and boringlife again, LOL.  Life's little rewards!  

Okay, love you all, Krissy :)

of penumothorax and a cell phone!

Good morning.  For those of you who are concerned about the hour at which I am up, LOL, I went to bed super early, and woke up early.  So don't worry about me, I am getting enough sleep.  Anyway, I am going back to bed after I write this.  I just wanted to play a little POGO (gotta have a little down time!) and to write this entry. 

So I found out what it was that the doctors were looking for on the CT scan last night.  It was a pneumothorax.  Turns out John has one.  It is an air pocket outside the lungs.  Actually, it causes a partially collapsed lung, because the air is outside the lung, which collapses the lung.  Guess what.  They did it to him during the bronchoscopy.  By poking the instrument through the wall of the lung.  Before they did the procedure the doctor did warn us that this did happen to one in 200 or 300 people.  I asked John if he still wanted the bronchoscopy, and he said yes.  He wanted to stop hurting.  In my mind I was thinking he would have a complication, just because he always gets one.  But then I pushed the thought out of my mind, because I didn't want to be hysterical.

At any rate, a pneumothorax can be very dangerous.  But the doctors said John's was pretty small.  Right now they are just watching it and hoping it reabsorbs itself back into the lungs.  If not, they will have to go back inside the lungs, poke through the lung wall, and suck the air back in.  Then they will have to wait for the lung to heal itself.

Oh boy.

As far as what kind of pneumonia John has, they are not sure yet.  They are going to have to wait "several" days to see what the cultures show.  Dr. E. said tonight that he doesn't think it is fungal (praise God), because it doesn't look like fungal under the microscope or on the X-rays.  So now we wait and see what the cultures grow.  

Well, that's about it on that news.  Actually John is feeling a little better and is not in as much pain!  He went for a walk in the hospital halls tonight!  I am going to keep him walking and sitting up in his bed, as much as possible.  I am excited about his progress.  As are the doctors.

On another note, I finally joined this century!  I have a cell phone now!  I will tell you what.  This is the first cell phone I have ever owned in my life, LOL.  I am so excited!  It will really help with John and all.  I just feel so cool with it, LOL.  And liberated in a way.  I won't have to always be trying to find a phone, or being tied down to a certain area when I am expecting a vital call.  I will be able to move around.  Welcome to this century, me!

Well, I think I'll go back to bed now.  Love you guys, Krissy :) 

some goodbyes

Hmmm.  Let's see if I can keep this short because it is a little after one in the morning.  Probably not, LOL.

Today was a long day.  John had several tests and visits from specialists.  Both Dr. Ehmann, the rotating oncologist, and Dr. Claxton, his regular oncologist came in for awhile.  Dr. E. listened to John's lungs and announced to his students that there was no need for a CT scan, that he could hear something in John's lungs.  Then he asked the students to listen to see if they could hear it.  They each took turns.  John told me later he was grateful that he served some purpose for the student's education, LOL.

Dr. Claxton and Dr. Ehmann conferred and decided that John should probably get IVIG again and chemo to try to stop the Autoimmune Hemolytic Anemia.  He will get it after the pneumonia clears up.  I am hoping John will be able to get it at home and not in Hershey.  I like it here, but I don't want to live here over the holiday season!  I think it will take at least four weeks to be administered.  

So anyway, John went for a bronchoscopy today after seeing the doctors and it was two hours before he returned to the room.  I went upstairs and played around on the computer, answered alerts and such.  Then I grabbed lunch.  When John came in the room I was relieved to see him, he had made it through the anesthesia and had no collapsed lungs, LOL.  I know I can be so dramatic, but it seems lately if something can go wrong, it happens to John, so I started to get a little concerned while I was waiting for him, thinking about the complications the doctor told us could occur during the procedure.

Then John was told that his blood counts were so low, and that he needed two bags of blood.  He didn't get any yesterday because they were worried that the blood would move blood clots along.  But not being concerned about that today, they wanted to give him blood immediately.  So they hung the first bag of blood.  By this time it was 7 PM.  Poor John hadn't eaten all day because of tests and they had forgotten toorder his dinner and it was finally getting here at about 7 AM when somebody busted in the room and shouted at him "Stop, don't eat!  Put your fork down."  I think John had gotten one bite in, LOL.  I asked what the problem was and the nurse said John couldn't have food because he needed to get a CT scan.  I thought this rather odd as Dr. E. said John didn't need a CT scan.  So I made a mental note to ask what the CT scan was for.  Then a lady from transport with a gurney showed up, and she was trying to take John downstairs to have the scan.  "You can't take John off our unit," the nurse insisted.  "You will have to do the CAT scan later.  He is getting blood and could have a reaction, and you wouldn't know what to do.  He has to stay on this floor until he is done with the blood."  Then the nurse told the transport woman she could have John after one bag of blood, then he would get the CT scan, then he could come back upstairs and eat his dinner, then he could have his second bag of blood.  I calculated this all out.  This put John to winding down around midnight.  What a long day for him.

Anyway, then a pulmonary specialist doctor walks in.  She asked John a lot of questions.  Then I asked her why they were doing a CT scan on John.  She said during the bronchoscopy that they MAY have found something unusual.  But she wouldn't tell us what it was until after they did a CT scan and did some conferring (the doctors).  So here I am worrying, wondering the two worst possibilities.  Fungal pneumonia or a tumor.  I gotta cut this out.  My mind is getting carried away with me.  Anyway, they are going to let us know tomorrow I think.  

So on that note, I should probably go to bed.  I need to be bright for tomorrow.  It may be a long day.  There is so much I want to tell you all about, but don't want to ramble on and on.

Oh, I do want to mention that so called "lost item" is found.  It was probably never stolen.  That is good to know that those going through hard times wouldn't do that to one another.

And on a final note I would like to say goodbye to Rex, a stem cell patient who died yesterday.  You will be missed.  And so will you - Kay, Jay, Rhonda, Bill, Roger, and Duke.  Don't think that I didn't notice your passing these past few months.  I think I was just too numb to say goodbye to you all.  Many of you were in the core group who were here all these months John was here also.  Out of all of you who got stem cell transplants, John is the only one still left alive.  And maybe Phil, I am not sure if he made it or not. 

Rex, you were so humerous.  You had such a zest for life.  Goodbye Rex.

Kay, you were my best friend here at The Lodge.  We sat up every night and talked.  I loved you.  I still do.  Why did you have to go?  Goodbye Kay.  I believe we will meet again someday.

Jay, I love you immensely.  You were such a stellar guy.  Even among the Amish, there was not one as honest and as good as you.  I miss you.  Goodbye Jay.  See you in Heaven.

Rhonda, you made me laugh!  And you were always willing to play games with us on nights when we were bored.  Goodbye Rhonda.  Love you.

Bill, thanks for the kindness you showed me in offering me rides to the hospital.  You were such a kind soul.  Sitting there at the kitchen table in Hope Lodge in great health one day, gone a couple of days later.  Goodbye Bill.

Goodbye Roger.  Didn't know you long, because you died about a week after your transplant.  Too bad we didn't get to know you.  Goodbye Roger.

And finally Duke.  You were bigger than life.  You were as big as your name.  Many in J-Land will remember you because I told them how you did St. Patrick's Day for us here at Hope Lodge, and Italian Day.  You had everybody singing along and having a great time.  You will not be forgotten.  Goodbye Duke.

Hello John.