Tuesday, June 21, 2011


We finally got an IV in Keegan's left hand after a good dose of valium.  Labs, 2 x-rays, and an initial surgical consult later, he was finally asleep for the night around midnight.  At one point, the IV team looked up as he fought them (after the valium dose) and asked where Keegan gets his strength.  Gray and I both answered "steroids!", but I guess the more eloquent answer would have been from God.  Yeah, that sounds better for sure.

The dye study showed that the port was in place and apparently working, although they did note some fluid on his chest in the area around it.  We ultimately decided to reaccess the port with a new needle around 3:45pm and run his maintenance fluids through it until bedtime.  It did not appear to be leaking terribly for those few hours before his TPN was ready, so we are running his normal TPN/lipids through the line tonight.  If it leaks at all through tomorrow, we will have to rest it for at least another 48 hours.  Then, I anticipate we would need to consider putting another PICC in for him to get his full nutrition.  At this point in time, we still think it is general infiltrate and edema that is leaking out, but we can't be sure just yet.  The nurse on the floor who accessed him today agreed with me and the oncology nurse from Friday that it just doesn't "feel" like the hub is in a good place.  Again, what that means?  Not really sure.

Tomorrow, Keegan will have his follow-up echocardiogram while we are inpatient.  The last echo done independently picked up on the stiffness in his heart before it was confirmed in the cath lab.  Our plan is to repeat the echos every two weeks for a bit to see if there are any changes.  If his pressures look worse or there appears to be any tissue being affected by them via echo, Keegan will go back to the cath lab.  If not, we will slowly extend the time between echos and re-cath in December.  The "mystery wound" looks a touch less angry today and has continued to drain significantly today.  The transplant and wound care teams are worried about it becoming infected, so I believe they will try a new way to cover it tomorrow.  We are nervous to put him on preventative antibiotics in case we mask any infection while he is on steroids.  We are also hoping to get some more information on his last colonoscopy results and what the feedback has been from pathologists at Boston and wherever else they were sent as far as his previous biopsy results.

Keegan seemed to feel all kinds of bad today.  He is back in the swing of functional constipation one day, followed by massive bad diapers the next.  Nothing today but a LOT of cramping and discomfort.  Now, Keegan's up to about 3.5 pounds of extra fluid retention too.  He showed a little energy here and there, which was always quickly followed by long stretches of lying in bed.  He is so over anyone poking on him or asking him to do anything he feels might remotely lead to a medical procedure, like wearing a mask to go outside.  Right before noon, he literally fell asleep in front of us as I consulted with the GI team.  By 7pm, he was asking to go to sleep.  By the time all the night shift meds had been given, it was around 8pm.  He told me to stop reading Horton Hears a Who and sing to him.  He was asleep before I could close the book.  I sure hope it's just the steroids taking their toll on him.

I have to thank you for the many words of encouragement and prayers yesterday.  We try to stay as positive as we can for Keegan through all of this.  There's so much about it all that I just hate.  I know I should take the time to write it all out.  It would probably make me feel better.  But most of the time, I think no one wants to hear about that.  Most of the time, I struggle to lay my excuses and worries down before the Lord and ask Him to fill that place with trust and faith.  Even a mustard seed, right?  Thank you for giving me that little seed by lifting our family up in your prayers and extending your kind thoughts and words.  Some days, that's all we can ask for.


The McPhersons said...

That's definitely a mouth full of updating. Your prayer warriors are at work and we all appreciate your updates! May you all be blessed with continued patience and energy as you are dealing with today's trials. You must be exhausted. We are here for prayers, love, and meals if needed ;) xoxo love u!

Tari Anne said...

I know that feeling...that no one wants to hear "it". People only want to hear good things. But honestly, I'm sure a lot of people read Keegan's blog no matter what. I don't expect good or bad, I just feel a lot of love for your family, as well as Keegan, and I just want to hear how he's doing...how you ALL are doing...and then I pray for whatever you guys need at the particular moment. You are an EXCELLENT writer, by the way...you have a way of mixing funny with serious. And...Keegan and Audrey are SO blessed to have you guys as parents!!