Round and Round We Go....

Here we are again, just two days before Avery's next IVIG infusion and still no direction.  So I had to take matters in my own hands of course which is beyond frustrating.  It truely amazes me that we are at the best hospital in the country and possibly the world and yet I am still struggling to get some direction from medical professionals.  I feel with a kid like Avery who is super complicated he is fixed up a when he is inpatient but you are on your own when you are home.  It is me making all the phone calls to different drs. and trying to get ordesr for blood work.  It's something else when I am starting to know which labs need which color test tubes.  Crazy huh! But necessary.

I put a call into immunology again with my concerns that Avery's platelets are on the lower end (111).  While this is not terribly low it is lower after 6 days of having his infusion and getting another one the next day.  See, when he went into the hospital the last time his platelets were 120s 3 days after his infusion and by day 6 he was down to 23 and bleeding out.  So you see my concerns!!!!! Despite what anyone wants to believe from their medical books it just doesn't fit my kid.  I have such post traumatic issues from this last hospitalization and if I can prevent it from happening again then I will.  But what I got from the dr. today was 111 is not bad especially if he is not bleeding anywhere.  For which I reminded him that Avery constantly bleeds from in and around his g tube.  Well no answer to that one right?  I took it upon myself to get an appt. with Hematology on frid. (although it sucks b/c the appt. is 4:30 pm on a friday afternoon).  I am sure I will be kicking myself on the way home, especially if I don't come out with some sort of plan.  I am just hoping that can give us some type of parameters for continuing with the infusions.  At the end of the day, I need to do what is best for Avery.  If these infusions are hurting him more than helping then it is NOT worth it in my book. But drs. see it completely different. 

As you can see from my last few posts I am beyond frustrated.  I am scared for my little boy.  There is so much pressure to keep giving him these infusions from the medical community but for me all I see is what it has done to him.  While I know it did great for him prior to all of this for me it is not worth the stress of constantly worrying about his labs.  The other thing is he looks like he is retaining fluids in his face. I don't know that this means for him.  Although his labs look decent. Others that have not seen him in awhile are asking if he is on steroids which can give that appearance.  I am so used to seeing him that I don't notice it only that he is SUPER heavy now.  So I have made another appt. to see if we can go down on his calories b.c it cannot be good for his respiratory issues which have been horrendous lately. Not to mention he won't fall asleep to after 9-10pm which is amazing with all the meds he gets.  UGH!!!!

Poor Isaiah had the absolutely worse migrane I have seen over the weekend & through Monday.  He slept almost the entire time.  I hope it is not getting worse, I just cannot even imagine it for him.  Especially since his bike just came in.   

Not to mention our "cute" little dog who I am ready to sell.  He is so much worse than a baby.  I know it will pass b/c he is only a pup and overall he is a good dog.  BUT!!!!!!!! TOTALLY not helping things right now.

This has totally turned into a complete *itch session but that is what this blog is for right?   I am obviously in a funk but it will pass. Although I did forget to mention last posting that Rick totally made my birthday on Friday.  He spoiled me to death and I love him for it.  We are also lucky to have each other as well as good friends and family.  It just feels like my life has caught up with me a bit these days is all. 

Well, I guess I am done for now.  I promise to be more positive in the next post, just not feeling it today.