Wednesday, October 30, 2013

Time for a break yet?

A week ago today, Keegan had surgery to place a new central IV line.  While we sat waiting at the hospital last Wednesday, I started drafting a long post about the craziness that had ensued the day before, but I never got around to finishing it.  It was a bunch of pity-me diatribe anyway, and as Audrey would say in her silly take of Sweet Brown's now somewhat infamous line, "nobody has time for that!"  If you don't know what I'm talking about, google it.  You'll thank me.  Promise.

If you have followed along with our updates via twitter on the right hand sidebar there, you'll know that Keegan's surgeon made a late-night decision last Tuesday to admit Keegan for surgery the next day and attempt the line "blind" because scheduling an MRV as taking too long.  After a very long day, Keegan finally came out of the OR in the early evening with a new tunneled catheter.  No more ports for him, that of course means no more swimming.  Something we will have to deal with next summer.  Unfortunately, the surgeon put the line in Keegan's right jugular, which will make his yearly heart catheterization, biopsy, and angiogram much more difficult.  Again, something we will deal with when the time comes.  The worst part of the day, however, was that Keegan was utterly confused by being discharged from the PACU, instead of going to an inpatient room.  We still are hoping it is just that it was a break from his routine, but to this day, he is still saying he needs to go to the inpatient floor.  A little prolonged for it to be just a routine issue.  We are praying that he is not foreshadowing a looming problem.

In true Keegan fashion, we have not had a break since last week's craziness.  His labs continue to drag; he is still having some difficulty with post-operative wound healing, and there was some concern Monday that the line may have been pulled out somewhat.  A third trip to the hospital in one day and a quick chest x-ray showed that it was ok to use though.  We should find out Friday if additional changes to his TPN and IV boluses is needed, but for now, we are adjusting to the increase in infusions.

We are hopeful that today's dismal weather will lift and allow us the opportunity to enjoy some trick-or-treating fun tomorrow as a family at home.  Once again, I ask for your patience as I update this blog only in fits and spurts.  I have every intention of doing a better job of updating in the coming months.  No honestly, I do.  Right now, I'm just barely keeping my head above water.  So thank you for every inch of grace you give to us and every prayer for Keegan's healing you can offer.  We appreciate it so much more than you know.

Keegan and his Buddy at his first Miracle League Track & Field Practice

Audrey and I in our official soccer team picture

Monday, October 21, 2013

New line, more TPN

I will get around to posting pictures and a full update soon.  Keegan has been on a downward slope lately, and it just has had me running on all cylinders with no time to get to the blog.

We met with Keegan's surgeon this morning to discuss the condition of his port.  It appears that Keegan is either rejecting his port, or his wound-healing is still so poor that the skin is degrading around it.  His surgeon took one look and confirmed what we were thinking...it has to come out.  He wants a new imaging study before going into the OR, which means two rounds of anesthesia.  It is pretty difficult to schedule these things on an outpatient basis, so it is possible that Keegan will be admitted to have his line replaced.  We should know in the next few days.

The other hit we took this morning was the decision to increase Keegan's IV nutrition by another day to accompany his worsening intestinal failure.  We knew that it would get worse as we continued to wean his steroids, and that is certainly what's happening.  His labs are not looking great, and he is losing weight.  Hopefully, this increase will be what he needs to feel a bit better.

Needless to say, these are hits we were expecting but dreading at the same time. You would think these expected hits would be ones we handle easily.  Unfortunately, they are not.  We appreciate every prayer for our Bug as we turn this new corner on our journey.  I am trying my hardest to get caught up in life and on this little blog.  Thank you for the constant support for our family.  It means the world to us.


Tuesday, October 8, 2013

Trip of a lifetime

Wow, I have so much to document here from our weekend trip to Albuquerque to spend time with Keegan's donor family, the Walkers.  I need a few days to let the whole experience sink in before I can possibly begin to put it all down in words.  It truly was the trip of a lifetime, but I sincerely hope it won't be the last one like it.  The entire weekend was blessed beyond measure.

While I work on getting the crazy amount of pictures edited and some thoughts organized, here are some news articles from our morning at the Balloon Fiesta on Sunday morning.  Thank you to everyone who made this day a reality.  It is an experience we will never forget.

KOAT Channel 7 evening news:
http://www.koat.com/balloon-fiesta-extended-coverage/6yearold-reunites-with-donor-family-at-fiesta/-/16111764/22304886/-/11bp51v/-/index.html

KOB Channel 4 evening news:
http://www.kob.com/article/stories/S3183332.shtml?cat=500

Albuquerque Journal front page article:
http://www.abqjournal.com/276903/news/two-families-celebrate-a-miracle.html