Monday, September 12, 2011

Keegan is 4!

It would be lovely to say that Keegan had an awesome fourth birthday.  But I can't.  It did end better than it started, so that is something to be thankful for, I suppose.  Last night, he had another rough night of 103-104 degree temps with lots of discomfort and nausea.  This morning, he spiked again and got sick.  He felt horrible, was hardly moving, and would barely let you touch him.  One more IV tylenol and dose of zofran brought him back to life.  He spent most of the day with a temperature in the 98s - a first since Saturday.  His attitude improved, and he showed a little more energy, even getting out of bed to the playground for a bit.  With the fever down, his joints felt somewhat better, and he was able to get almost to a run momentarily.  Keegan's temperature came back up a little before bed.  This could be the end of this cycle, but I don't think anyone will be sure until he makes it through the night without a spike.

Tomorrow, Keegan will have another round of general anesthesia in order to do a special type of MRI of his brain called an magnetic resonance angiogram (MRA).  We are getting closer to having a plan to treat Keegan's immune dysfunction and hopefully stop the fevers.  It is going to require a trying different drugs until we find what works.  Unfortunately, that will involve a lot of waiting and watching, so we will have big decisions coming our way soon.  Before we take such big steps though, the doctors are trying to rule out everything they can and learn as much as possible about Keegan first.

What was awesome about Keegan's birthday was the amount of cards, messages, emails, and phone calls that he received today!  Not to mention quite a few cool toys that happened to come his way.  The Child Life specialist brought balloons and a neat racetrack toy for him.  She also ordered him a cake, and we all sang happy birthday.  No candles allowed in the hospital, and he wanted nothing to do with the cake.  But we tried, and the nurses were more than happy to share his cake.  Thank you, thank you to everyone who reached out in one way or another.  You truly made this day special.  Even if Keegan didn't understand, Gray and I did, and we are extremely grateful and humbled by your love and support for our Bug.

Keegan also received one more cool gift today.  There is a great guy who volunteers at the hospital here.  He spends time with families and kids who are inpatient and helps them make movies or slideshows as a special way to remember, commemorate, heal, cope, or celebrate.  Whatever the patient or family feels like doing.  So today, he helped us make a special birthday movie just for Keegan.  It was a perfect way for us to celebrate Keegan today.  Keegan watched it several times.  I loved hearing him say, "that's Aww-duh-wee" or "it's Keegan!" when the pictures scrolled by. 

Happy birthday, Buggy!  I hope your coming year brings healing and growth that we are yet to even imagine.  We love you so much more than you could ever know, and we are amazed every day by your strength, courage, and resiliency.  You are an inspiration to everyone you meet.  You are a shining example of God's boundless love.  Keep fighting, Keegan.  We are with you every step of the way.


Lauren said...

Happy Birthday, Keegan!! Love, love, love the movie!


Aunt Alex said...

I miss you sooo much, Big Bug! So fun to see you grow along the way. I love being your aunt!

Vicki Costanza said...

Happy, happy birthday Keegan - what a wonderful video of a very special little boy and his amazing family. May God continue to bless you all!