Sunday, August 5, 2012

Round 32

Keegan spiked another fever last night and was admitted to the cardiac floor at Children's again this morning.  His 32nd hospital stay in four years.  This had been the longest Keegan was at home since October 2010.  This fever cycle actually started Friday, but his temperature soared past the cut-off for an admission around 3:30am last night.  He had a really rough morning between the fevers, the testing, a needle change, and transport downtown.  However, his fever has been down since late morning.

At this time, we are treating it as a flare with yet another steroid pulse, as his labs are showing early signs of this.  Cultures were drawn this morning and have to be watched for 48 hours before we can be sure it's not a recurrence of the staph epi line infection.  There are a lot of what-ifs that I don't want to discuss right now based on either of those situations (flare vs. flare+infection).  The fact that we found out his SCID genetics likely won't be back until September makes all of this even more frustrating.

Keegan has developed some wound-healing issues that are continuing to worsen.  He has been quick to bruise since the steroids started last summer, but now the slightest touch can cause a gaping wound.  Both shins and his bottom have ugly ones that have been there over two weeks, despite treating them as much as he will allow.  This morning, a simple touch of an otoscope in his ear canal to check for ear infections caused his ear to bleed so profusely that when it stopped, the entire opening was blocked by a plug of dried blood.  This appears to be extremely confusing to the team, and as of right now, they are telling us it is from chronic steroid use.

After losing weight and seeing his labs trend down for the last two months, we restarted TPN three times per week on Wednesday.  That capped a difficult week after the loss of our dear friend, Nate Arnold.  Nate was Keegan's transplant "twin", as he received his angel lungs on Keegan's second transplant anniversary.  I cannot even begin tonight to untangle the mass of emotions and grief that we have experienced over the last week.  To top it off with an inpatient admission for yet another fever after 11 weeks of the same kind of thinly veiled stability that Nate was experiencing is almost too much.

We hope to know more tomorrow with more time, the full team, and another set of labs in the morning. We are praying for a break for Keegan tonight, and we would greatly appreciate it if you would join us.


Greg said...

A set of prayers is coming from California...


Lauren said...

You are all in my prayers.

Lauren Wood

Julie said...