The Struggles..

Sometimes I think about a post and wonder... should I, shouldn't I ?? Then I think... if a post could help or console just one person going through the same struggles then it is worth it.

Although medically Devin has been doing great. His weight gain is going strong (maybe too strong) LOL, bowel seems to be doing good (for the moment), pooping every two days or so, tolerating ALL kinds of food no complaints of belly pain, nausea, or diarrhea.. ALL this is a HUGE!! accomplishment and we cherish each and every day!!  Our BIGGEST struggle continues to be.. EMOTIONAL!! and let me tell you give me medical issues over emotional any day!!!

Every day is different.. NO two are ever even remotely similar!! and we NEVER string two good days together in a row :(   Who would have ever thought after surviving 5 years on TPN & Lipids, never eating by mouth, central line sepsis more times then I can count both bacterial and fungal, complete bowel failure, a sick liver... Surviving 2 years 6 months post bowel transplant, Swine flu that landed him on life support fighting for his life... Only to have these issues now!!!

Some days are so hard.. I am frustrated, tired, and emotionally and physically drained.  I try my hardest to give each of my children exactly what the need and the time they deserve but lately Devin is so out of sorts it becomes very hard.

Yesterday, Devin had an appointment with the psychiatrist.  As I sat their talking to him this sudden sense of guilt came across me... Mrs. McQueen lets recap from birth, we will not even take into account in utero...

** 11 months alone in the NICU, most of it spent in a isolation room.

        - NO bonding

        - NO one to hold before, during, or after procedures

- No one to hold and rock when he just wasn't feeling well.

- had operations and recovery alone!

        - Probably spent most of his time in a diaper and maybe a tee shirt.. never dressed.. never had a favorite blanket.

        - Lights, noise, beeping, alarms, no control, no real sleep pattern.  Being woken up every 2 hrs from birth until last January..  

3 months being bounced between a long term care facility and a hospital.

Then finally he has a consistent person in his life... but the hospitalizations continue.. trauma after trauma, lights, beeping monitors, alarms, NO CHOICES, then transplant, trauma after trauma, colonoscopy after colonoscopy, endoscopy, and acute life threatening event... 

NO structure, NO routine because his health didn't allow it.. 

I am sure you all get the picture of how this conversation was going...

So, Mrs. McQueen... what does he have to be happy about?  

How does he feel every day? 

How are these medications that keep him alive effecting his every day life?

What does he have to laugh about?

Maybe, just maybe he is starting to process all he has been through and you are expecting way to much from a little boy who has been through more then most adults will go through in their entire life.

As I drove home I thought.. why does it all sound so easy to understand and so easy to accept while I am sitting in his office.  But living it is so so so difficult.. 

Please God, give Devin the strength and me the patience to work through all this... Praying for a great school year!!!!   Because Devin needs so desperately to have structure, routine, SOCIALIZATION,  a friend to play with, a place outside our home to feel safe in, and to see that their is life outside that is safe..