Thursday, May 26, 2011


I had a gut feeling that we were gearing up for a long fight.  I guess I was hoping it wouldn't start until next week!  Keegan woke up with 102.9 degree fever yet again this morning.  This is the fourth episode of fever this month, continuing a cycle that started at the beginning of April.  The last few, he has been lethargic but in a pretty easy-going mood.  Not this time, he is moaning in his sleep, is very puffy, very lethargic, and rather irritable.  He is retaining almost an entire kilo of fluid since this past Sunday (2.2 lbs, which is roughly 1/6 of his body weight in 4 days).

Instead of taking him to the ER, the transplant team had us bring him to clinic.  There was a lot of discussion and a lot of waiting.  These episodic fevers are throwing a bit of a twist into our picture and making it even more difficult to start the steroid pulse he so desperately needs to help his GI system.  We resubmitted a urine culture, even though the one from Tuesday was negative.  We drew an initial set of labs from his PICC, and when things looked worse than Tuesday, Keegan was once again admitted to the hospital.  The fevers haven't stopped spiking yet, but they're not going above 102 right now.

Tomorrow, he will have a full body CT scan.  We are looking for any signs of infection that we have missed through cultures and a few other things.  We are also running stool cultures again.  I would not be surprised in the least if he tests positive for c-diff, since he has been on very strong antibiotics for almost a month now.  Antibiotics to treat an unknown and possibly nonexistent infection that have probably left his already fragile GI system at risk for a mean opportunistic infection.  C-diff is usually a hospital-acquired bug you pick up while on antibiotics because they tend to wipe out all the "good" bacteria in your gut.  If he is positive for c-diff, it will be because of us treating the fevers, not a cause of the fevers. It would definitely postpone Keegan's heart catheterization if it is positive.  The cath will require the doctors to get to his heart via the femoral artery in his leg; any kind of GI infection would be dangerous in that situation.

Keegan's doctors have also now consulted with the Infectious Disease (ID) doctors that specialize in immunocompromised patients.  They have ordered quite a few more lab tests.  There aren't a lot of things that cause intermittent, recurring fevers, but we are tracking down every zebra we have to at this point.  IF we cannot identify a source for these fevers by the beginning of next week, we will likely consider them to be an inflammation response and proceed as planned with the steroid pulse.  We need to be as confident as we absolutely can be that there is no infection before doing that because although steroids help fight inflammation, they will feed an infection and make it much worse.

Needless to say, the team has already warned us that this does not look like it will be a short inpatient stay.  We are starting it off completely exhausted and utterly exasperated with the way things have just seemingly declined so quickly with Keegan over the last few months.  We are praying and hoping beyond all we can put into words that the Lord will see fit to provide some clarity, guidance, and healing for our Bug.  We are ready to be home as a family again.  Especially in time for this precious girl's first birthday...

We have been so humbled today by the outpouring of prayers, encouragement, and support for our family.  You give us strength to keep up the fight.  Thank you so much.  More tomorrow as we learn it.


Stacie said...

Praying for Keegan, your family, and every physician on Keegan's case. May the peace of God transcend all understanding.

Much love,
Stacie Smith

Lauren said...

Praying for healing, strength, endurance and guidance.

Lauren Wood

Tari Anne said...

Maddie, Gray, Keegan, and Audrey: I have just caught up with the last few posts and I am devastated to hear how difficult times have been for you recently. But I can see how God is lifting you up each day and helping you get through each second. I wish there were words I could say that could take away an ounce of your pain, especially Keegan's pain. He is such an amazing little boy, and I think about him every day. I pray every day for God to continue to give you all strength, but especially healing to Keegan.

hughesfamily said...

You don't know me...and I have no idea how I even found your blog. But, I have been following you for a while. I think about you and your sweet family almost daily. I will be praying extra hard for you. I am so sorry. I know your two little precious children are so loved and they realize how much their parents do to show that love.