Henry's Blog

Friday, August 08, 2008

Feeling the Heat

It was 106 degrees Wednesday as we checked in with Dr. L, Henry's pediatrician. We spent six hours in the ER the previous night after we discovered Henry sitting in a small puddle of blood.

In a nutshell, since Henry has lost all feeling and most muscle control from the waist down, he has been unable to completely empty his bladder The fluid remaining becomes a little cesspool of bacteria and he ended up with a bladder infection. So after six hours of tests, some IV fluids and an antibiotic, Henry came home feeling a little better and even a little more energized than before.

Subsequently, Dr. L gave us a lesson in the catheter, which will be used 3-4 times a day to empty the bladder.

Of all the pain, treatments and procedures Henry has endured, one particular event is burned into his memory. Following his very first surgery one of his doctors unceremoniously and not very gracefully removed the catheter that had been placed during his surgery. Henry never really forgave that doctor for the discomfort and degradation of that moment. Ever since, when any kind of possible procedure has been discussed, Henry always asked, "Do I have to have one of those things? Can you take it out when I'm asleep?" So it was not with great joy that he learned he would have to have one put in and removed several times a day.

But Henry is still full of surprises. As Dr. L explained the importance of emptying the bladder every four hours or so, Henry asked if he would have to get up during the night to have it done.

"No," he was told, " you don't have to wake up and do it."

"OK, then," he replied.

Despite the recent MRI that shows progressive tumor in the spine, and although we have discontinued the Revlimid, we stay hopeful. Henry is getting good results from accupuncture in treating pain and inflammation, and we continue to be proactive in his treatments.

Today is the second anniversary of his first surgery and diagnosis.

It is much hotter this year.


Anonymous Anonymous said...

The three of you continue to amaze us with the power of your combined spirits. You are the epitome of a family that is always there for each other. Keep up the wonderful, loving work. You are in our thoughts and prayers all the time.
Love, Deb, Dan, Brian, & Annie

12:51 PM  
Blogger Kim Aycock said...

I prayed for you all at mass this morning. You are so loved. Kisses to Henry.


12:58 PM  
Blogger Kimi said...

I lit a candle at mass for you today. You are incredibly brave and you are equally loved.

Miss you-

1:14 PM  
Anonymous Alisa said...

Henry- It has been H.O.T! and WOW what a pineapple cake. GREAT JOB! I hope you are staying cool and feeling a little better! I have been praying for you, your mom and your dad. Stay strong. If there is one person that I know that can beat this battle, IT IS YOU!!! HUGS- Mrs. Alisa

9:28 PM  
Blogger theatreknitter said...

prayers sent your way that the end of the summers offers some cooling relief in the weather. Your strength as a family continues to amaze me. I am so glad that camp was a great.

My love and prayers to you all through the next round of treatments.

11:18 AM  
Anonymous Anonymous said...


I continue to pray for all of you. Much love. Melaine Bennett

10:20 PM  
Anonymous Anonymous said...

Wishing you all the very best. Lots of hugs and prayers for you all.

8:18 AM  
Anonymous Anonymous said...

I also prayed for you at Mass...Henry you are a great example of tolerance, being able to surrender. jc

9:28 PM  

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