Friday, May 20, 2011

Round 3

It appears we may be destined to spend every weekend in May in the hospital with Keegan.  This will be our third weekend, only one left to go.  Bleh.

Keegan woke up around 3am.  He wasn't fussy or upset, just restless and awake.  I left him for awhile, hoping he would go back to sleep on his own before my usual 4:30am pump/formula/diaper check.  When he was still up at 3:45am, I went to check on him and prayed I wouldn't find his PICC line messed up somehow.  I could feel his body radiating heat before my hand even reached him.  103.3 degrees.  Blood pressure and heart rate were sky high.  Dang it.  I quickly packed him up, and Gray rushed him to the Legacy ER while I waited for my parents to come sit with Audrey.

Cultures and labs were drawn.  Chest x-ray.  Urinalysis.  IV antibiotics started.  And then, of course, this...

Ambulance ride #12

Keegan is now inpatient downtown on the cardiac floor.  We are running the obligatory 48 hour course of antibiotics and waiting for cultures to be cleared.  His labwork is not indicative of a bacterial infection.  A virus is not super likely considering the fever just took a 5-day hibernation before spiking back up, nor is Audrey sick with viral-like symptoms.  The most likely situation is that it is inflammation-related from the rest of Keegan's issues.  He had a pretty rough day with a fever that just would not break until about 4pm.  He still obviously doesn't feel well, but he actually perked up a bit just a few moments ago to play in bed with some cars.


Truthfully, this is probably the best place for him to be right now.  Keegan's blood pressure spiked so high yesterday, that his team called in some medication last night for him to be given right away.  The blood pressure and continued bleeding from his central lines mean we are going to have to get a good read on the pressures in his heart and test for rejection.  So, assuming the cultures stay negative over the weekend, Keegan will go to the cath lab at 8:30am on Monday morning for a heart catheterization, angiogram, and heart biopsy.

We aren't sure what, if anything, we will find from the heart cath and biopsy.  It is very likely that we will start the steroid pulse we had been planning early next week, and Keegan would stay inpatient while we monitor his initial reaction to that.  There are a lot of "what if"s and "what's next" questions floating around right now, but honestly, we will just have to wait them out.  We did find out that the pathology lab here was able to use some preserved blood to run the test we needed to confirm the graft-vs-host disease and started working on that earlier this week.  We're not sure when that will be finished, but at least it's one item on the to-do list that can be crossed off.

All of this is to say that we don't exactly know much of anything right now, and we probably won't know much of anything over the weekend.  But we have a plan to start off the week, which is always a good way to start.

And just because I miss her and think she's the cutest doll baby that ever lived...

"I looooove cereal bars."  Sticky goodness.

(Sorry for all the iphone pics lately.  New computer, haven't figured it all out yet with my camera.)

Thank you once again for your prayers, love, and support.  We need you now more than ever.  This is uncharted water for us and for our transplant team.  We are beyond exhausted on so many levels.  But we are hopeful and praying that together, by placing our trust in our merciful Lord, we will bring healing to our Bug soon.

Come to me, all you who are weary and burdened, and I will give you rest.
Take my yoke upon you and learn from me, for I am gentle and humble of heart,
and you will find rest for your souls.
Matthew 11:28-29

3 comments:

Jennifer said...

Hoping and praying your soul finds rest soon.... and your sweet little Bug too.... Praying for wisdom, clarity and healing!

Julie said...

Praying the doctors are able to find results and the best course of treatment. Praying for you to find peace and rest. Love the pics especially the sticky goodness of cereal bars. Both kids are so sweet.

Stacie said...

Praying....

Much love,
Stacie Smith