Saturday, July 9, 2011

Home once again

I really should stop promising a time or date for a post.  Sorry about that.

After a whirlwind day yesterday and not getting up from anesthesia until almost 5pm, Keegan was discharged last night - in rush hour traffic, of course.  But the important thing is we are home once again.  Hopefully, we'll get to stay here for a little while.

We weren't able to get Keegan on the schedule for his PICC placement until yesterday.  They did get it in, and it's working.  So, we will be resting his port for a little bit.  No set time frame at this point.  His surgeon believes that the steroids, in combination with his neutropenia and immunosuppression, are the culprit here.  Between poor healing and extra edema, he thinks Keegan's little body just can't take the stress from the needle right now.  We're not ready to give up on it just yet.  Once the "mystery wound" is healed (which is very slow but happening), we could deaccess the port once a week on dressing change day and let him swim or have a nice big bath with bubbles to float in.  It holds the promise that he could be normal on the outside and still have a point of access on the inside.  We are hopeful that as the steroids are weaned back down to his maintenance dose, we will be able to pull the PICC and use the port again.

There's where things get tricky.  We thought we would start weaning the steroids this week, but we are not actually going to start reducing his dose until Monday.  The bad news is, protocol for this steroid pulse is a very slow wean - 6 weeks.  UGH!  I was really hoping it would all be over way sooner than that.  Keegan is SO big from the steroids.  He is carrying 5 pounds of fluid retention.  His poor little eyes are like little slits.  I'm very ready to see my little boy's face again.  People keeping asking us how Keegan's doing, and that's a really hard question to answer.  He is definitely better than he was during the fever cycles before we started the steroid pulse.  We felt that he was much more unstable then.  Still, there are so many things and changes in him that we are seeing right now that make it very difficult to turn down our level of worrying.  Nothing that we can point to a lab test or diagnostic to say it's this or that, just a general impression that he doesn't look or feel well.  Today he had only a few moments of energy.  He asked to go to bed at 6:15pm and fell asleep the minute I put him in his bed.  Is it the steroids or something more ominous?  I suppose only time will tell.

In other news, he had two play therapy sessions this week.  They went well, and I'm looking forward to Keegan continuing to grow and heal during them.  His therapist says that these sessions are an opportunity for him to feel and express his feelings with minimal limitations (i.e. he can take time to cry and get upset freely but not throw toys or hit, etc).  It's teaching him to recognize his feelings and hopefully one day communicate those with us.  The downer from the sessions was his therapist's initial observations about his developmental stage.  Whether he is behind or rather regressed after his recent illnesses or brain bleeds, his play is developmentally more along the lines of a 2 year old than an almost-4-year old.  We are still trying to wrap up his neurological testing, and the therapist will help us interpret and work with those results once we do.

His echo this week was stable.  There is talk that we may go to once a month echos.  That makes me nervous but happy at the same time.  I really want to make sure we are doing everything reasonable to stay ahead of this disease process.  But stable is stable, and overkill will do nothing but increase our stress and anxiety.  He will have his normal speech therapy, labs, and GI appointment this week, along with a play therapy session.

Audrey is home too.  Not sure if she's teething, in a growth spurt, or just having some serious, serious adjustment problems.  She had some trouble sleeping the last few nights with my parents and still is.  As I type, Gray is driving her around trying to get her to calm down and sleep.  I can't help but think that all the chaos in her little life so far is making things difficult for her.  It literally breaks my heart in two.  I want to hold her 24 hours a day and reassure her that she is important and loved and never alone.  She deserves that, and it so difficult as a mom to see that fear in your daughter's eyes when she thinks you might not always be there for her.

Thank you once again for your prayers for our little family.  I honestly just can't say that enough.  It's going to be a busy week here and sounds like a long night ahead too.  We are so appreciative of your support and encouragement through it all.


Cody said...

Maddie - thank you so much for the update ... wishing for you an uneventful week full of healing.

scrippe1 said...

Glad to hear you guys are home. We also appreciate the updates. We know how hard it must be to find the time to let us know what's going on.

We love all of you,