Thursday, November 4, 2010

Catching A Break...

My sweet, sweet fighter of a boy is so uncomfortable.  He is covered, head to toe, in giant hives.  I am so heartbroken for him.  We have been to a dermatologist, had a biopsy done there.  An allergist, allergy testing done there. Got rid of our dogs because of a positive dog allergy.  And the hives prevail.   Bigger and worse than ever!  



He's been biopsied now three times.  We have cultured.  We have tried so many medications. It comes and it goes, but this, this is the worst.  It's a "mystery" the doctors say.  We traveled to Tampa, yet again, to what will now be the fourth doctor trying to figure this out.  A pediatrician, an allergist and two dermatologists.  I'm a mess.  When I say I melted yesterday, I melted.  I was so full of angst over my son. He sits and itches and claws at himself.  I have tried. every.thing!!!! If you think it's something, I can guarantee you I have thought of it too.  I literally cut his mattress open looking for f ing bed bugs, hoping it was bed bugs, at least then we'd have an answer.  $200 later and no bed bugs.  
We are home now.  He is resting on new medication. Oral this time and I am nervous about it, but we had to do something to give him some relief because none of the topical stuff is helping.  He's on medication orally three times a day for itching (so strong it's what they give chemotherapy patients, but was cleared through cardiology) and steroid cream on his skin.  Along with his cardiac meds, his kidney med and his reflux med.  My poor sweet angel of a boy. If I could take this away for you, in an instant I would.  
Tomorrow we are headed back to Tampa, given he's in ok spirits, which man if he doesn't push on through.   This time we are going to support a cause very near and dear to my heart, The American Heart Association.  I can't wait to walk that walk with my hypoplastic left heart baby at one year old rockin it, cause last year he was in an isolette fighting to make it home for the first time in his life.  Saturday we Mamas will walk with our heads held high and our heros on our hips!  What a celebration!

Praying for answers in the week to come for my boy and for a joyous, celebratory weekend with those who know this struggle and journey the deepest.  

Night all!
~J

P.S.
We all know my addiction to McDonalds diet coke. I know, I know so freaking bad for me, but it's been my vice since having children.  I swear I'll work on it...tomorrow ; )
Anyway I was laying in bed and I rolled over staring off into space.  This cup was on my night stand (shocker I know, but it had water in it this time, I swear) and for some odd reason decided to actually read the cup:

And it hit home.  Unexpectedly and I realized once again how reminders sneak up on you.  I can truly say I always have thrown my change in the Ronald McDonald bin when I would blow in the drive thru. Only now I really, really understand just how much that change matters.  There are families that spend the holidays in the Ronald McDonald house and it breaks my heart because I didn't spend holidays there, but I spent a lot  of time there and it's hard and it hurts and you see weary, tired, sad mommys and daddys climbing the stairs at the end of the day, that day of sitting in the hospital hours on end,  wishing it would all just go away for a bit. Wishing they could go home.  I SO get it and that change, man am I glad I gave it because even though I never knew to what capacity that change was helping, it helped and now I know and the change is now dollars and if it can help "spread the joy" to even one person struggling on a journey such as we have, then it is all worth it.  

Closing my eyes tonight thankful for another life lesson.  Ask yourself, does this matter, is it important in the end, because there are children and families living in rooms that are not their own praying for a miracle...xoxo

7 comments:

cici said...

awwww baby boy. I feel the discomfort :(
First thing I think is laundry detergent or a virus or a med he used to take leaving his system. I know you have researched it all though. I know it will disappear as quickly as it came so momma bear, try to get some good sleep. He will be fine. I will Pray for your peace of mind.
xxoo

Heather Crawley said...

It isn't much, but I just thought I would share what we have done for our son who suffers from severe ezcema. We learned this itch control from National Jewish Medical Center in Denver. When he is severely itching, we put his steriod cream on and then cover it with a wet shirt with a dry shirt on top. The water cools the skin and brings the itch sensation down. It doesn't take it away completely, but it does ease it some. He is now 11 and gets his wet clothes on himself when he is itching and can't sleep.

Amber said...

this may sound strange, but the picture of your boys at that festival...are those sunflowers behind them? i am horribly allergic to sunflowers, and break out in hives if the wind even blows them my direction. any chance that is what is causing those horrible hives? might be worth a shot. sorry he is so miserable:( there is nothing worse than not being able to fix your baby's hurts!

Melissa said...

OMG poor poor baby :( I hurt just looking at the pictures can't imagine what its like for him or you?? I hope they figure this out in a hurry.

Melissa

Albertina said...

Hope your baby get well very soon!!

The mom of 4 monkeys! said...

This is probably such a long shot but I had a big time, huge, hive problem last year. It turned out that I have a thyroid disease and when I got that under control the hives went away. Just a thought since I know you are desperate.
Good luck! That little hero doesn't need another challenge to deal with!

Anonymous said...

Did the dr's ever figure out what the cause of the rash was? My son seems to have a smiliar type of rash, we are being sent to a dermatologist to see what it is.

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