Another update (gonna be a long one)

OK - I had my lower lobectomy last Tuesday.  It took longer than they thought because there was so much adhesion between the infected part of the lung and the top part of the lung - which they were desparately trying to save - so they had to scrape the "funk" off of the lung and seperate it from the almost totally destroyed left diaphram (they can't fix this right now, they did say that "someday" they may have to go back in and put a mesh in there to keep the seperation of my lower belly organs and upper chest organs.  The surgeon said that the only way they were able to save the top part of the lung was because the infected abscess was seperated from the top portion of the lung only because my spleen had wedged its way between them and took a brunt of the infection.  So the surgery itself last an additional 3.5 hours longer than they anticipated (oringinally thought it would be 3 hours).  Well after surgery - I stayed overnight in recovery and then they took me back to my room.  I felt good.  I looked good.  they observed me, running all of the tests (CT scan, x-rays, tons of blood cultures, urine cultures, ultrasound of the lower extremeties, ultrasound of the heart, EKGs of the heart, etc.)  However, I kept spiking fevers and maintained a extremely rapid resting heart rate (in the 140s) - so they allowed me (after passing a swollow test) that I could go on clear liquid diet - YUCK!  So, I just moved over to just drinking water and grape juice and eating ice.  On Friday morning they told me I was going to be moved over to the ICU for more close monitoring.  When they got me down here it was like I was dying or something - I was immediately swarmed by no less than 8 nurses, each with their individual role to play.  I felt like I was on one of those TV Shows and everything was going in slow-motion.  So, I have been here, trying to maintain good spirits.  My tests were all coming back fine, while they sent off for more tests.  I stopped getting fevers  for at least 24 hours now.  My heartrate went to and continues to maintain at a normal rate.  I have a bit of fluid collection right where the incision is and I have a constant ache where the chest tube and "blake" tube - I was reassured by 2 different surgeons that it was a normal reaction the major surgery that I just went through.  I really felt that I may be able to go home within a week or so.  I mean, I was feeling good!  Then the gastro surgeon (not my main one, but one of his associates) comes in and does his assessment and says everything seems to be going well.  Then I told him that the color of the fluid draining out of both my chest tube and sure looked an aweful a lot like the color of my purple grape juice.  Ahhhh!  Not good.  Now he's concerned about the fistula being wide open.  The he asked if I had any other questions - so I asked if I could get a couple pieces of bacon and a slice of toast (I was being totally serious) since I hadn't eaten anything since last Monday.  So he said that he would check  and that he'd be back.  He came back and said that not only could I not have bacon and toast - but that they were probably going to re-insert the J-Tube and make me NPO for maybe 6-12 months.  You can't imagine the devistation I am feeling.  Like I am on a backslide.  I also know that they tend to set my setting to receive 2500 to 3000 calories a day - and I may start gaining weight.  I know that I won't get better until the fistula heals - and I know that the fistula won't heal unless I am getting enough nutrition. Ahhh!  I guess I am just disappointed that I have been NPO for more than half of the time since my surgery.  I really love food - I really love drinking water, etc.  and to not be able to put anything in my mouth for another several months is more that I want to be dealing with right now.

Aww Linda.  I'm glad your through surgery but sorry your going through this continued mess.  Ugh.  And NPO .... feeding tube 6-12 just blows but if it will allow you to heal ... it's best.  Hang in there hon. 

Tom

I'm so sorry to hear this Linda! 

I'm glad the surgery went well and you are feeling better.  The NPO sucks and I don't know how I would handle that but try to hang in there girl....eventually it will get better!

Sending up prayers you heal quickly!

Holy Cow!  This is terrible.  I am so sorry that this is happening to you. 
I am sending an E-Hug to you!  Idon't know if I would have the patience, but I guess there is no choice.
My best wishes and prayers for you.
Susan

Linda, I'm so sorry you are going through all this. Healing thoughts being sent your way.

Larra

I'm so sorry that this is happening Linda.  I hope that your healing goes well and you are able to progress quicker than expected! 

 So sorry you are still having issues, Linda. Swinging critters and thinking healing thoughts for you!

Holy crap my dear!  I had no idea it would take so long to have a fistula heal on it's own.  I am really glad the lobectomy was successful and so glad your breathing issues are better.  I'm also glad you FEEL better.  That is a plus.  It must be terribly disheartening to go through this and then to learn that it's not over.  Hang in there, Linda.  *hugs*

Wow.  Hang in there.  We are all cheering for you!    Is this considered a complication from DS? Or, do they think it's because of something else?  I know you mentioned lung issues so I wasn't sure.   Hang in there!!