Wednesday, November 17, 2010
If I Could...
If I could predict the lotto numbers like I can predict Devins illnesses coming on... I'd be a millionaire.. Yes, you guessed it Devin is back in the hospital... back in the PICU... back with pneumonia... Devin finished his 10 day course of antibiotics Saturday night... Sunday all was good... Monday slept a lot.... Tuesday slept a lot more... Today I went in to get him up this AM and he was shaking in bed... 102.6 under his arm!! I called the doctor whom I had seen on Thursday she said take him to the ER........ OMG!!! this is our 3rd trip to the ER in 4 weeks.... our 3rd hospitalization in 4 weeks... his 3rd diagnosis of pneumonia in 4 weeks!!!
Poor Devin is not feeling so hot.... he has a fever... this time he has a cough... and he just is miserable... I am praying that tomorrow my local GI doctor and the transplant GI doctor will have a heart to heart because WE ARE MISSING SOMETHING!!!!!!!!
The "new" working theory is that he is aspirating his formula.... they could put him though a whole slew of tests to try and confirm this... whether the tests are negative or positive the bottom line is he keeps getting recurring pneumonia with a bacteria that is "usually" found in your GI tract.... he is not a good candidate for a fundoplication because of all the abdominal surgeries he has already had... so that leaves us two options... 1st is to run his feeds continuously :( that means he'll be attached to his feeding pump 24/7.... He hates 1 hr.... 2nd is to covert his g-tube to a g-j tube... NEITHER option is a good one... they are both steps backwards...
I made myself very clear today & I hope I was heard.... THIS IS ABOUT QUALITY OF LIFE... NOT QUANTITY!!! I know it might be hard for all of you to read... you might not even be able to understand where I am coming from... BUT for those of you who know Devin you'll know exactly where I am coming from... He loves life & loves living!!! and thats what we will do!!!
These past 3 weeks have been brutal on him... covered from head to toe with bruises from being held down... needle sticks from his feet all the way up his arm... begging not to be put to sleep for anything.... knowing enough to say "I'll breath deeper please don't put that mask (oxygen) on my face".... his stamina is so low.... it's so sad... ENOUGH he's seven!!!! we are walking a tight rope, it's only a matter of time before we start to have bowel problems after being on strong antibiotics for the last MONTH!!!
It's time to find an answer!!!!!! and when he comes home the Christmas tree will go up and this house will start rocking in the holiday season...
Poor Devin is not feeling so hot.... he has a fever... this time he has a cough... and he just is miserable... I am praying that tomorrow my local GI doctor and the transplant GI doctor will have a heart to heart because WE ARE MISSING SOMETHING!!!!!!!!
The "new" working theory is that he is aspirating his formula.... they could put him though a whole slew of tests to try and confirm this... whether the tests are negative or positive the bottom line is he keeps getting recurring pneumonia with a bacteria that is "usually" found in your GI tract.... he is not a good candidate for a fundoplication because of all the abdominal surgeries he has already had... so that leaves us two options... 1st is to run his feeds continuously :( that means he'll be attached to his feeding pump 24/7.... He hates 1 hr.... 2nd is to covert his g-tube to a g-j tube... NEITHER option is a good one... they are both steps backwards...
I made myself very clear today & I hope I was heard.... THIS IS ABOUT QUALITY OF LIFE... NOT QUANTITY!!! I know it might be hard for all of you to read... you might not even be able to understand where I am coming from... BUT for those of you who know Devin you'll know exactly where I am coming from... He loves life & loves living!!! and thats what we will do!!!
These past 3 weeks have been brutal on him... covered from head to toe with bruises from being held down... needle sticks from his feet all the way up his arm... begging not to be put to sleep for anything.... knowing enough to say "I'll breath deeper please don't put that mask (oxygen) on my face".... his stamina is so low.... it's so sad... ENOUGH he's seven!!!! we are walking a tight rope, it's only a matter of time before we start to have bowel problems after being on strong antibiotics for the last MONTH!!!
It's time to find an answer!!!!!! and when he comes home the Christmas tree will go up and this house will start rocking in the holiday season...
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4 comments:
I feel terrible for what he goes through...he is always in my prayers as are you and the rest of your family.
Love you, Dev. - Bryan & Janine
Praying with all my heart for God's strength, wisdom, discernment, peace and grace for all of you. Praying for answers... Sending my love to each of you!
In His mighty love,
Carolyn O'Cain
I completely know where you are coming from. It's a hard reality but it's the truth. It's torture on the senses and body to undergo what Devin has. My son has the same feeling about the 02 mask (he's 9).He even asks me now about the scars left from previous IV placements-and there are alot. I pray the drs figure out an effective solution to Devin's pneumonias and he gets home to enjoy the holiday fun.
www.carepages.com cp:ebscarepage
~Deb
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