Saturday, May 23, 2015

100 Days

Never in my wildest dreams, or nightmares as it seems more correct, did I imagine that we would still be where we are on Memorial Day weekend.  Quite honestly, I can't wrap my mind around the fact that June is right around the corner.  It feels like I'm a computer whose history has been wiped clean for the past 100 days.  I can't even begin to imagine how my son feels.

I know that in the past nine days that I spent with him in the hospital that we have discussed how he feels like he has Stockholm Syndrome in a sense.  You want to leave the hospital so badly and yet you have felt safe there.  They keep you alive there.

As I posted on social media, the tests that they did this week on his duodenum showed no leaks which is an absolute miracle.  Several weeks ago they had described that area as "shredded" and they were anticipating removing the entire area to reroute his digestive system in the future.  I don't really know what all of this means for his future surgery but I believe it means that if he heals more fully they won't have to remove that part of him.  Praise Jesus!!!

So now we will begin another segment of our journey as we plan to, God willing, bring him home next week to begin the next phase of healing.  We will have home health coming in to do the blood work and such but for the most part, I will do the day to day care for him.  That includes several IV antibiotics daily, caring for 7 drains, and continuing his tube feedings.  Let me say here that I NEVER in a million years have wanted anything to do with being a nurse.  But it has been my joy and privilege to take care of my son while he was hospitalized and will be as well when he comes home.

The doctors are huddling together to work on what and how they will do the surgery that he needs to have to get back to "normal".  Right now his pancreas is still inflamed and he still has areas of infection that are being drained out of him.  This is not a pleasant experience.  He has drains on both side, his belly, and 3 in his back.  Lying in bed is not comfortable but it is a necessity.  He is very weak and has lost a tremendous amount of weight and muscle.

I feel like I need to clarify here that his liver is working perfectly and always has been.  This has never been about his liver.  He has a stricture in a bile duct that needs repairing but other than that the illness we have been dealing with was all caused by the procedure that they did to try to put a stent in that duct.

We continue to need your prayers to see him through this ordeal and get him back to good health.  He still longs to get back to work and to be a normal 27 year old man.

I can't describe to you how wonderful it was to leave that hotel and hope that I never have to stay there again during this part of the process.  But I, too, have mixed feelings about leaving the hospital. We have had such wonderful care there.  The nurses on his unit have been fantastic as they have on the other 3 units he has lived in while being there.  It makes my heart sad to think I may never see some of them again.  They feel like family.  I wish I could take some of them home with me to live with me!!!  I'm sure that when he has his surgery we will get to be there again and see them so it makes it a little less difficult to say goodbye.

I will be driving back down to bring him home, so I look forward to saying my teary goodbyes to the nurses, techs and the housekeeping people who have made our days less difficult.  The nurse practitioner who works with his liver docs has become a dear friend to us.  I will miss her daily visits with us that always have included more than just medical talk.

Once Adam is home with us at our house he will still need a lot of rest and time to heal.  But he will be HOME.  Of course he yearns to be back in his cute house in Seneca, but that time will come.  I want to reiterate that he CANNOT eat food by mouth so if you want to visit him please do not bring food as it only serves as a frustration to the fact that he hasn't eaten in all this time.  For many weeks he wasn't even affected by food being around because he had no sense of hunger.  But that tiger has awakened recently and he dreams of food many hours of the day. He still can only drink clear liquids and most of those go out a drain from his stomach.

There is no way that I could ever say enough words of thanks to extend our appreciation for all the people who are praying for Adam and us.  It is overwhelming and humbling.  We love you and are so thankful for the many people God has placed in our lives who are walking with us through this horrible time in our family.
If you want to keep up with what is happening you can do so here.  I probably won't keep posting on social media as I know it can be annoying to see continual updates.


1 comment:

  1. The updates are certainly not annoying! I have been thinking of you SO much, and so sorry you all have to go thru this! Truly hope he is on the upward swing!