Thursday, January 19, 2012

Kidneys, colds, and catching up

Kidneys:  Keegan had a decent nephrology appointment last week.  His kidney function labs and urinalysis have stayed stable, but his blood pressure has not.  You may not be aware, but more often than not, your kidneys are the culprits with high blood pressure.  Since we just did a heart cath in December, we are more confident that Keegan's hypertension is kidney-related.  The nephrologist was concerned that one of his three blood pressure medications (four, if you include diuretics) could cause long-term damage and exacerbate his potassium deficiency.  So, we more than doubled another one, which helped just a itsy bitsy smidge, in hopes that we will see even better numbers and be able to reduce or stop the more dangerous medication.  We will have to watch his blood pressure, urine output, and weight closely over the next few weeks to see what does or doesn't work.  The doctor acknowledged the need to repeat his kidney function testing, but he wants to wait until we have a plan from Cincinnati.

Colds: I am sick of snot.  UGH.  I want to fumigate my house with antibacterial spray.  Audrey picked up yet another cold last week at school.  Once she started in with the runny nose, I started us all on zinc and followed her closely with lysol and hand sanitizer.  It was all for naught, I'm afraid.  One by one, we all fell.  I seem to be the last one to go down.  Audrey is still just a touch runny.  Keegan handled it very well.  I actually think his steroids and daily claritin helped this time.  We are praying HARD that this has left us by our trip next week.

Catching up on the rest: We really loved the developmental pediatrician Keegan saw at Scottish Rite last week.  He really blew me away, and we are looking forward to continuing to work with him.  He is going to refine the list of available behavioral therapies to really tailor to Keegan's needs.  I will post more about that as we get more information.  He also felt there wasn't a need to rush right into anything until we have a solid plan from Cincinnati.

It's been another typically busy week in addition to doing last minute planning for the trip.  Keegan will have labs drawn on Friday.  Since the last steroid wean, his GI problems have worsened, and he has begun complaining more of joint pain.  It should be interesting to see where we stand this week.

Thank you all for your kind words, support, and encouragement after the last post.  We feel stuck in a surreal time warp right now.  Much like when we left for Boston, it is difficult to look at Keegan on a good day and convince yourself how sick he truly is.  So much is in limbo right now.  Until we have a plan from this appointment, our whole life is suspended.  Are we to resume as much of a normal life as possible because there will be no transplant on the horizon?  Just waiting and watching breathlessly every day for him to get sick again?  Or are we waiting on news of a match to proceed with a transplant?  When? Where?  What we do until these decisions are made seems rather pointless.

Luckily, we don't have much longer to wait...although the days are starting to feel like years.  In these days of anticipation, fear, and anxiety, we find help when we turn to the Lord.  I wrote last that I've found even when my faith is at rock bottom, just lifting my hands in prayer never fails to bring me the comfort and mercy I seek.  Lifting your hands can be done in worship, praise, supplication, but also as a sign of needing comfort, of needing love.  I realized this the other day when Audrey fell and then ran to me crying, arms lifted as a sign to pick her up, to love on her and help her feel better.  Lifting our hands in prayer is the same.  A way of saying, "carry me, Lord.  I can't do this myself."

I know that each of you who reached out to us in the last week are there to help provide the earthly hands of comfort and love that we need during this time.  So once again, we thank you.  Thank you so much for being there for us during these uncertain times.  It means so much more than we can say.


Ashley & Chuck said...

I'm continuing to pray for all of you as always. Your family is always on my heart. Love you all and I hope you gets some much needed answers next week.

Kelly said...

Thinking of you and sending hugs, from one HLH family to another.

Kelly Marsh
Mom to Hannah Marsh, HLH Survivor