Saturday, September 24, 2011

Baby steps

Keegan is making baby steps of improvement each day.  His labs have been up and down, but that is not unexpected at this point.  We are doing our best to make small changes each day, so that he handles it better and is able to achieve these baby steps without too many set-backs.



Tidbits from the last two days:
  • His inflammation markers are showing the most improvement.  Some of them are actually measurable now!
  • His platelet levels have taken some drastic swings, but his hemoglobin/hematocrit are only dropping by small bits each day.  This makes us more confident that the "eating" of his blood cells by the macrophages has slowed down.  His liver numbers are starting to normalize a bit too.
  • We don't think he has any more "active" bleeding.  The dressing on his bone marrow biopsy site was changed yesterday.  It looks like a scab has formed at the skin level, but some bleeding occurred underneath that from the bone.  Again, it's not wholly surprising and will take some time to heal after such a trauma.
  • Due to the coagulopathy (inability to clot), he is bruised everywhere.  Not just on his hips, backs, and legs.  Anywhere he was poked, prodded, or moved in the last week has developed a horrible, nasty bruise.  We were joking with the nurse earlier when we were leaving the room that we needed a big sign or some certified letter from the doctor that we weren't beating him.
  • The bleeding, bruising, and inflammation are all making it very painful for Keegan to walk well.  Today, he made it about 10 yards, two different times.  He also walked down a few stairs, which was probably a bit too much today.  A little each day will help though.
  • So far, he has had almost two days worth of doses of the tacrolimus without a big reaction by his kidneys.  Another problem with the tacro is that it is given by mouth.  We know Keegan doesn't absorb well through his gut, and that was evident this morning when the level of tacrolimus was virtually undetectable in his blood despite a good-size dose.  Increase and try again tomorrow.  
  • His echo yesterday was stable from earlier in the week.  He has been experiencing some bradycardia (slow heart rate) at night that we have never seen before.  Keegan has always actually been tachycardic (high heart rate) for his age.  Right now, the doctors aren't too concerned but are watching closely.  His respiratory rate isn't changing as much as it was a few days ago with these episodes, so it isn't quite as alarming as it was at first glance.
  • We are slowly switching medications back to g-tube versions from IV.  He has eaten a few goldfish crackers the last two days and a bit of applesauce today.  Keegan's tummy has not been too happy with this situation.  He hasn't thrown up in about 24 hours, but the diarrhea is back in full force.  
  • We are seeing small gains in his neurological status each day.  His eyes looked better today.  He interacted with the tv and with us more.  He is still struggling to get words out.  It seems most obvious when he is trying to string together a few.  We will talk again with the team on Monday about timing to repeat his brain MRI.  We held off on the CT scan because the neurologist thought it wouldn't show us everything we wanted and would expose him to more radiation.  Now that he is more stable, he will be able to better handle anesthesia for a good MRI scan.  To follow up on his MRI from the other week, it was relatively stable compared to the one in June.  The radiologist did say, however, that the cluster of bleeds was not consistent with clots showered from the bad port.  Those would be scattered along the periphery of his brain, and these are "deeper".  This means they are likely spontaneous bleeds more consistent with the HLH and another reason a repeat scan would be helpful.


All in all, everyone is very pleased with how he is recovering, especially us.  We did finally have a nice, long sit-down with the oncologist specializing in HLH.  She said it is hard to say that holding off on the chemo was a bad decision considering how well he is doing right now.  However based on his history and the severity of this last week, she did not think, nor does anyone really, that this will be his last "flare".  That's where bigger decisions will come into play.  We are waiting on some genetic testing to come back, but if it is negative, as we anticipate it will be, for a genetic predisposition towards HLH, we will just have to wait and watch.  She said it would be a good idea to have a follow-up appointment with a specialist at home, just to make sure we don't miss anything.  We will just have to see how that all lines up when we actually get close to going home.

Making a run for it!
... A coffee run that is, but it was good to get out of the hospital for a brief minute!

I think that's enough for tonight.  Gray is staying at the hospital tonight so that I can go get some rest.  Keegan slept a touch better last night, and so far, he is doing much better tonight.  Here's praying he keeps it up!  Thank you so much for all the prayers.  I'm going to try to get a post or two about Audrey up tomorrow.  It sure is fun to talk to her on the video chat and see pics taken by my parents and her teachers.  But oh my goodness, how I miss this precious little girl!

A screen shot of our "bathtub cam" video chats after Keegan is asleep.
Please ignore my creepy face in the corner!

4 comments:

Julie said...

So happy to hear of the baby steps that are taking place. Continuing to pray for you all.

Ashley & Chuck said...

I'm so glad and thankful that Keegan is getting better! I know you are so grateful for the team of Doctors there in Boston! We're still praying for you all!

Becky Cudlipp said...

So happy to hear a bit of good news and praying that things continue to trend in a positive direction!

Stacie said...

Wonderful to hear of some improvement. Continuing to lift Keegan up in prayer. May the coming days be full of rest and healing for his sweet body and peace and wisdom for you all. Texas misses you, but you are clearly in the best hands right now for Keegan.

Much love,
Stacie Smith