Monday, June 6, 2011

Update on Keegan's procedures

Briefly, I wanted to give a little update on Keegan's surgical port placement and brain MRI today.  He handled the anesthesia fine, and other than being a little sore and tired, he is doing ok this evening.  By the time we gathered with our family to celebrate Audrey's first birthday, he was willing to sit up and ride in a wagon to her little party.

  • The eye exam that was done in the OR was to make sure no clots were thrown to his eyes from the bad port.  Since he can't tell us if he was having vision problems, the opthamology team was able to dilate his eyes and look for clots while he was asleep.  Cool, huh?  Long story short - eyes are all clear!

  • Rheumatology visited today.  There are a few genetic tests for periodic fever syndromes they may send off for, but ultimately, they didn't think they had much to offer us.

  • The new port is in.  The surgeon had a little difficulty getting it in.  He had to try several times and ultimately use ultrasound to find the vein in Keegan's leg.  It shouldn't be that hard.  Usually, you can feel the artery with your hand, and the vein should be much larger than the artery and right next to it. So usually, you can just "guess" where the vein is and get it on the first or second try.  Once the needle is in the vein, you thread a wire through it and guide it up where you want it to go.  That was very difficult to do also.  Dr. Megison didn't have a good reason why it was that way, except that maybe it had been accessed too many times in the past.  At any rate, it's in, and it is NOT accessed right now.  The plan is to let it heal for about a week before we use it.  And you better be darn-tootin' sure that we will test a blood-gas on it before using it the first time to be 100% confident it's in the right place.  The PICC will stay in for another week while we wait.

  • Brain MRI.  Hmm.  I am still not sure that we understand the results well enough to share them here, but I will say what we do know.  Keegan's last brain MRI was at the end of March after the mini-stroke (transient ischemic attack).  At that time, we saw what looked like a very large air bubble at the very top of his head.  We now know that it made it there because the port catheter was in an artery which pumped it directly up to his brain, not because it somehow made it through the PFO in his heart.  We repeated the brain MRI today because we wanted to be sure that the port hadn't thrown a cluster of bacteria (called an infectious emboli) to his brain that would explain the recurring fevers.  It didn't.  No signs of infection.  What we did find was quite a few small bleeds in Keegan's brain, including the area we previously thought was air.  We are not exactly sure why or how these are happening.  They do not appear to be "actively" bleeding according to the doctors.  Again, I don't think we understand it quite well enough for me to explain it tonight.  We don't think Keegan is in any immediate danger, and these findings alone will not keep us inpatient.  It definitely has us, as parents, worried.  Really worried.  Whether the doctors are or not.  We will continue to ask questions and seek answers and will share what we know when we can.  For now, we would greatly appreciate your prayers for Keegan's protection and that he continues to not show us any neurological complications from whatever these bleeds are.
That's about all from Keegan tonight.  As of right now, the team is pretty adamant about putting the steroid pulse off for another week.  We could be discharged late tomorrow or Wednesday.  They want to see if he spikes another fever this weekend and what happens without any IV antibiotics.  The plan would be to draw the blood cultures but stay home as long as he can be managed with oral tylenol.  Then, we would come back inpatient next week to start the steroid pulse with 48 hours of observation.  Theoretically.  I'm not thrilled with that plan.  I was trying to avoid bringing Audrey home for just a few days if at all possible.  It just confuses her so much.  We will see what people say tomorrow though.  Things can always change when we are talking about Keegan.

Thank you again for prayers for Bug today.  We certainly felt them and are so very, very grateful.

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