Tuesday, July 26, 2011

Fever #3

Keegan's fever is back for the third week in a row.  I can't say we are surprised.  We were also right when we predicted that the fevers would get stronger and harder on Keegan.  Last night around 3am, we realized he was at 103.7.  It used to be that the first fever wouldn't be too high and would wane for several hours before the second round, which was always more aggressive than the first round.  Not this time.  High, straight out of the box.  

We gave one dose of IV tylenol at home and took him to the ER for blood cultures around 4am, thinking we would come right home afterwards.  This time, the tylenol didn't work, and his fever spiked through it after only about 2 hours while we were waiting in the ER.  At which point, Keegan was admitted to the cardiology floor and transported via ambulance (again) downtown.  His temperature continued to stay high through 3 more doses of tylenol.  It finally came down around 5pm and has stayed down for a bit.  If history proves correct, this is not the end of this cycle though.  Could be an interesting night.

Keegan looks bad - swollen, pale, red rimmed eyes, lethargic.  His labs, however, remain largely unchanged from last week's numbers.  A few other things that have been concerning as of late...Keegan's g-button is having a lot of leakage, and the skin around it is fairly bruised.  Rather than the swelling and weight starting to reduce as the steroids have come down, Keegan's weight is still going up.  We even cut his calories down in the TPN/lipids to help speed the process up with no luck.  Lastly, his GI symptoms seem to have changed for the worse.  It now appears that Keegan has lost the ability to even push the diarrhea out.  For some reason, his intestines cannot function well enough to even pass diarrhea.  This is highly concerning on many levels, but since we are still researching the possible condition (autoimmune enteropathy), no one really knows what to make of it yet.  Due to this, we are going to move his colonoscopy and possibly a capsule endoscopy up to the end of this week.

Unfortunately, this is prime vacation time for those people lucky enough to have a vacation.  This week our cardiologist, gastroenterologist, and the immunologist are all out of town.  How convenient.  We are working with the GI doctor on consult service at the hospital, and he has been able to keep in touch with our regular doctor.  The immunology consult service deferred to the doctor we are planning to see on the 10th, who specializes in transplant immunology.  Very helpful.  And cardiology?  I don't have the energy to go into that tonight.

Moral of the story is that we have no more answers or ideas tonight than we did this morning or two months ago.  We will see what these scopes tell us at the end of the week.  If we can determine a way to support him through the fevers the next two weeks, we may hold out to meet with immunology.  I'm not sure we will have any more information even after all that.  If we don't, it will be time to leave home and seek another opinion.  Likely back to Boston at this point, since they are familiar with his case.  No reason to reinvent the wheel right away.  

For now, we appreciate your prayers for Keegan, our family, and Keegan's medical team.  He is holding is own, but we can't help but think that could change at any minute.  We know it could, as it did to another sweet little boy from our transplant family who passed away this morning.  Please keep this family in your prayers tonight too as they deal with the unexpected and devastating loss of their son.  Another shocking reminder that this is our reality every single day.  Praying that we all continue to find the strength through His grace to get up and fight this battle again tomorrow.


Stacie said...

Praying for you all as well as the medical teams in Dallas as well as Boston or wherever you may end up.

I hate that there are so many unknowns at this point. What a mama wouldn't give to make her baby feel better? I know you'd do it if you could. Hang in there, friend.

Much love,
Stacie Smith

Lauren said...

Thinking about you all and praying for strength, healing, and guidance.

Lauren Wood

Tobi Bratten said...

You all don't know me, but I came across your blog and have been following it for about the last 2 weeks. Just wanted to let you know I am praying for you and little Keegan. I don't know how one little boy - or family - could stand going through much more. Bless his heart. May God be with you all.

Tobi Bratten

Julie said...

Praying for you all. May God bless you with strength and wisdom.

hughesfamily said...

You don't know me, but I have been following your story. I am thinking about your family every day.


Stacie said...

One of my favorite children's books is called "I Love You So" by Marianne Richmond. A fellow cancer mom recommended it to me. It was so special to her little boy.

For some reason a part of that book has been popping into my head a lot today, each time I think of you all. So, I think I should share it. The little one is asking Mommy about the depths of her love...

"Even when I'm sick...and I can't get out of bed? Do you love me better healthy than with fever in my head?"

I love you sick or able. You're ALWAYS you to me, the ONE I LOVE forevermore, undeniably.

Needless to say, it's an adorable book if you don't already have it. I think Keegan would love it.

Praying for you tonight...

Much love,
Stacie Smith

Anonymous said...

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18 I am praying and asking God to be close to your broken hearts and save your crushed spirits. Love,Linda McElreath