Being "normal" sucks

Im not so sure that I am cut out to be a Mom of a "normal" kid. 

I called Brayden's GI doc because he has been throwing up at his night feeding.  Not everyday but about every 3 days.  When he does throw up, it smells like pure stomach acid.  Its not necessarily the throwing up that is bothering me, its the way he cries after he gags before he throws up and the way he looks at me afterwards and seems genuinely scared.  I worry about his esophagus and nasal passages cause all that acid cant be good for them!  So anyway, Dr Kendall called me back and we talked a few min about what I was seeing.  Brayden is already on the maximum dose of Prevacid the maximum times a day (15mg 2xday) and the same for Zantac (22.5mg 2xday).  There is no place to go with medications.  Dr Kendall suggested that we have another EGD (scope down his throat and into his stomach) to see if there is any further damage and a Ph probe while he is on his meds to see if the problem is really reflux or not. 

I am on the fence about the procedures.  1 part of me says just do it and lets get him fixed but the other part doesn't want my baby going back into the hospital and going under anesthesia again.  After I got off the phone with Dr Kendall, I called Kyle and told him what he said.  I was balling by the end of the conversation.  My lil boy is going to have to have "surgery".  No, its not his first time having surgery by no means but yes, it will be his first "non transplant" related surgery since transplant.  We were just getting to be a normal, mostly doctor and hospital free family. 

For some reason, I seem to be freaking out about this WAY more than I should.  Seriously, Brayden has had a weird fever for the past few days and I didnt even freak out about that.  Fever can be a very bad thing in a transplant kid and I am just taking it in stride.  Thinking about him having the EGD is really getting to me! 

I guess this is what parents of healthy kids go thru huh?  This is what they feel like when their kid gets tubes put in their ears or has their tonsills taken out.  No, its not a lifethreatening surgery but it IS surgery. 

Having Brayden has taught me more about how subjective pain and stress are.  Parents say to me all the time, "Why should I complain to you when you have so much more going on that I do"  Well, because high stress and sick kid was "my normal" and surgeries and complications were just an everyday thing to us.  The thing that is stressing them out is however bad they say it is.  Just because you are freaking out over your kid busting his nose and bleeding all over the place doesnt mean that you are one of those crazy moms....it means that this is a big deal to you.  Up until April, nothing but transplant was a big deal to me.  Now, it seams that the smaller things are bigger stressors to me than I thought they would be. 

Oh well, such is life.  As I always tell people when they ask how I do it, "Adapt and Overcome"  That's all we can do.  Otherwise, we will drive ourselves crazy trying to fix everything. 



On a good note, Brayden has learned to crawl a bit.  He can now crawl about 4 feet if he is really after something.  It is funny to watch!  Here comes Brayden! Everybody better watch out!

I just dont know what to feel.

Why is it that I get attached to people that I have never met?  I have just been heartbroken over this mom that I have never met losing her son.  I guess I feel a connection to these mom's that have chronic kids.  I get teary-eyed every time that I mention/think about Conner and what his mom had to go thru while holding his hand while he took his last breath.  How did she do it?  What would I have done?  That could have been me!  I could and have a chance to still have to deal with that some day.  How will it feel?  Will I feel?  Would I go crazy?  Would I lose my mind?  I just cant imagine and dont want to.  Parents are ment to bury their kids!  I know it happens but geeze, why do things happen to good people?

I am worried about our friends (some Internet some not)

Max did get some good news today.  They are moving up his transplant date to next week!  Pray all day on July 8th.  His mom will have the privilege to give life to him again.  But......it is more risky for Max than it was Brayden.  Max has small lungs as a result of him not having much fluid when he was in utero.  The major fluid they have to give him to keep the kidney healthy will make it harder for Max to breath!  I know he will have struggles but he will come out a whole new boy!  A healthy, peeing, eating, not puking big boy!!

Summer has had a hard day today.  She spiked a fever, is breathing really really fast and looks sicker.  She did get Max's old transplant date so if she is medically stable he will get her Daddy's kidney but I feel for her parents.  Laura and Dan are doing a wonderful job....I would have snapped by now, Laura did have a come apart on the docs but for good reason.  Laura, if you read this....I love you and you are amazing! 

Aiden seems to be getting better but they dont know what his deal was! 

I am a God believing God fearing person.  No I dont lead the life that I probably should but I do think that God does things for a reason.  I have accepted that I cant control anything but I sometimes find myself questioning his "motives".  God, please dont take these babies from their Mommies!  They need them like I need my lil boy!  Please Please Please get them healthy and make them feel better, Thanks...Jenny