Thursday

02 Dec Thursday

Things got pretty busy around here this morning, being the first day on a new floor.  I hate going to a floor where no one knows us.  Trying to explain Keegan’s complex medical history to a million new people is such a chore.  Needless to say, I didn’t finish my update from last night, and I apologize.  I was exhausted, and once I got Keegan to sleep (at 11:30pm) last night, I desperately needed to shut my eyes for a few minutes before vitals at midnight.

Anyhoo, update for today:

• Keegan’s transfer to the renal floor was stressful at worst and a comic relief at best.  The dialysis machine is supposed to have battery back-up….yeah, it didn’t.  We unplugged it, and it turned off in the middle of a cycle where the dialysis fluid was sitting in Keegan’s abdominal cavity.  It wasn’t a danger to him at all – just frustrating, as it had to be completely reprogrammed.  Then, we tried to go down an elevator that wouldn’t fit the bed & dialysis machine (or the two nurses, Gray, or me for that matter), and the doors got stuck squeezed up against the bed.  Keegan started to get upset stuck in the elevator as Gray tried to push the doors open.  While that was happening, Keegan’s oxygen tank started to run low, and his oxygen saturations dipped down into the 80s.  His formula line opened up while he was upset and drenched him and his bed, blanket, and puppy in stinky formula.  I felt so bad for the poor nurses!  And oh to have been a fly on the wall as we tried to squeeze the big ol’ ICU bed into the tiny room with the machine, IV pole, feeding pump, oxygen tank, monitors, etc, to transfer him to another bed.  We got it all IN the room and then struggled to squeeze the ICU bed back OUT.  I sure hope his poor ICU nurses went home and had a glass of wine for themselves and me!  They deserved it!
• Keegan had a pretty good day yesterday, and he sat up for quite some time playing.  That was really great to see.  We started his formula feeds at a very low caloric density and rate.  He tolerated them well, and we went up a bit in rate today.  We should be able to get him to the right rate and concentration by the beginning of next week.  GI is really hoping that the Elecare feeds will be what he needs to get his old GI problems back in check.

When he was feeling better yesterday evening, we took the time to clean him up a bit. 
The shower cap has “shampoo” in it.  Too funny!
• Keegan is tolerating the dialysis very well.  He has had some urine output, but it has once again turned bloody and is what we call “dumb” pee (i.e. not filtering well).  That’s neither here nor there at the moment…we’re just happy to see anything right now!  The level of toxins in his blood has come down to more reasonable levels without having to go up on the dialysis, which is a great sign.  If he does well with it today and tomorrow, we will possibly give him some time off of it on Saturday to see how he’ll do!
• Today, his albumin levels have dropped significantly, and he is once again, extremely puffy, pale, and lethargic.  He does not want to sit up today, but he has been in a decent mood.  We are giving him an infusion of albumin, which will hopefully help him feel better.

Asking for lots of “hugs” today and just wanting Mama & Daddy to watch toons with him today.  Currently, he’s watching the Toy Story series in succession.
• We have been able to hold his pain meds for almost 24 hours!
• He is still hemolyzing (destroying) his red blood cells and platelets, but not as quickly as before.  He is once again neutropenic (low white count).  That’s normal for Keegan though, and when the magic number shows up on his labs, we are ready to put him back on the GCSF shots that have helped him fight that in the past.

All in all, we are hanging in there.  Keegan is so used to hospital life, that he takes each day as it comes.  It’s a good lesson for the rest of us.  Gray and I and our families are pretty good at going into “inpatient mode.”  Thank goodness Audrey is going with the flow for now!  The absolute best thing about being moved to the floor is that we will get to see her more often, and she will be able to see her beloved big brother again!  My mom is planning to bring her up tomorrow.  I hope Keegan is having a better day then and will be glad to see her.  I know Gray and I will be!  We were spending some time with her yesterday down in the lobby when the Dallas Stars showed up at the hospital.  One of our friends from PR spotted us, grabbed the team captain Brendan Morrow, and snapped a few pics with the three of us.  Can’t wait to see those!

We learned a very long time ago that you have to take this journey one day at a time.  A good day today doesn’t guarantee one tomorrow and vice versa.  We are trying to remain optimistic and yet realistic at the same time.  Denial doesn’t do anyone any good, but Keegan has fought hard and surprised us time and time again.  As things pan out, we will be more forthcoming with Keegan’s options for the future.  We are always praying for Keegan’s complete healing, and if that is not His will, we pray for the strength to provide for Keegan’s needs as best we can at home.  Have I said “thank you” enough lately?  Because I don’t feel like I have.  We truly appreciate your prayers and support.  They keep us going, knowing we are not fighting for Keegan alone.  So, just in case I haven’t said it enough, thank you again.