Sunday, May 15, 2011

The post where I whine...and rant...

It's 10:15pm.  On a normal Sunday evening, my husband and I would be in bed, turning out the lights for the night.  We would have just checked in on all of the children to give them their nightly blessing.  All would be right within our four walls.  But tonight, there are only three people at home, because our Bright Eyes was once again admitted to the hospital. 

Yesterday, B.E. started showing signs of the rash that he never had during his entire time at the hospital.  By the end of the day he said it hurt too much to walk.  Today he woke up relatively fine.  His eyes looked almost completely white again, his lips just a tad on the red side.  Hubby and I played a silly scavenger hunt game with both Zep and Bright Eyes.  We noticed that B.E. was limping a bit, but I was warned ahead of time that he might suffer some arthritis-type symptoms for several more weeks.  At about 4pm, he started refusing to walk again and complained of horrible pain in his feet.  His eyes and lips had both reddened.  We took him to soak in a warm bath and things suddenly turned horrible.  The rash on his body intensified and he was writhing in pain.  He was screaming and crying.  All I could do was hold his hand.  I tried so hard, but I couldn't keep myself from crying uncontrollably.  I know I scared Zep, and for that I feel horrible. 

The on-call Infectious Disease doctor suggested we bring him back to the hospital.  We waited a whole 5 minutes before they called us back and went to work on him.  When the nurse came in with a "newbie" nurse, she asked him if he'd ever seen Kawasaki Disease before; he hadn't.  She went on to explain to him that he was looking at a classic case.  Yes, reassuring to know that we've got a definite diagnosis, but not good because I don't want him to have this disease anymore and all she has to do is look at him to see it.  And here we thought things were getting better.

They've already had to stick him twice for blood and an IV line.  I HATE this...and I HATE saying that word, but I really HATE it!  The entire time we were carrying him to the car the only thing he kept saying was that he didn't want any more shots.  All I want to do is hold him and make him feel better.  My little boy should be going to his last day of school tomorrow with his friends, and instead he'll be in a hospital room receiving another blood transfusion.  It's just not fair.  I know I'm supposed to be strong.  I know I should be thankful that it's not something worse, but I'M NOT!  I'm sorry if that's selfish, but this sucks!

So, once again, I beg you for your prayers.  Lord, please let this next IVIG treatment be his last!  Lord, please let us have our little boy back!!  I don't care if he colors on the walls, sticks gum in his hair, or rides on the garage door...I just want him back!!  And Lord, please help me to trust in You!  I know that this is in Your hands.  Help me to let go and let You!


Donna said...

You are not alone- God will give you the strength, grace and fortitude to carry this cross. He loves B.E. even more than you do. We are all here praying. Jesus, we trust in You. Heal this precious boy.

rick said...

praying for u and ur family devin, it's not fair, i would feel the same exact way, hopefully this treatment will work for him this time. know that god is with u and ur son. will be praying for u to have strength and for ur son to have a speedy recovery.

CSR said...

Devon, Donna told me this wknd about your precious son and all that your family is going through. You are all in our prayers.

Catherine Runge (we met at Donna's home for the "home school meeting" ;))

McKt said...

Praying for your sweet boy. I hope he has already woken up this morning feeling much better. And it is okay to cry out in songs of lament, He wants to hear it from you.