Well I got the call I had been waiting for and we got some "hopefully" quite exciting news! Here's a little background first:
A few months back her GI group started having a morning meeting everyday in order to discuss all their patients in the hospital and to decide the best treatment plans etc. Anyway, apparently this is how D. Mehta(our GI doc) heard about Riley's infection and surgery being put on hold as well as her J-tube getting pulled out. All of this apparently prompted him to call Dr. Fortunato at Wake Forest in NC and try to get him to do the motility testing on Riley. One big issue was once we do the pyloroplasty we will never be able to get a true picture of how her gut functions on it's own and what her issues are truly caused by. Apparently he talked a good talk and Dr. Fortunato agreed to see her and do the testing! D. Mehta called me last Wednesday to tell me the good news and give me the number to call and set things up. I was thrilled since I had no idea about any of this so it was a wonderful surprise!
So, that leaves us with today. I finally heard back from his office today while I was at the ENT with Liam. They have scheduled her appt. for June 14 and her manometry testing will be on June 17. He is also waiting to speak with one particular doctor there apparently and they will also be doing some sort of testing having to do with her autonomic dysfunction. So, we still know there is a much bigger margin of error in the testing due to her size but mostly her moving around during the testing. But obviously they feel it will produce some useful info or at least we will have a chance since I'm sure D. Mehta would never put her through this otherwise. So, now we wait and pray we can walk our tight rope we know all to well to prevent any major issues until then. HA HA HA I know better than to even say that! Shall we say let's just pray we make it there! LOL
And now on to Liam... As I said we were at his ENT appt. today and discussed his ear tubes which had fallen out and also to review his CT scans of his sinuses. So, on that front considering Liam already got an ear infection before they were completely out and the holes hadn't even closed that is a no brainer, he will be having those replaced. He also had significant anatomical issues in his sinuses. He feels these are definitely contributing to his chronic sinus infections. So between his crappy immune system causing him to always get infections and then his anatomy being a problem and basically holding onto it it is no wonder he is always sick! So, Liam will be having his ear tubes replaced and sinus surgery... He says it's less painful than having his tonsils out and the recovery is about the same. If he wouldn't have gotten dehydrated last time we wouldn't have had any issues so since that shouldn't be an issue this time I am hoping this makes a significant difference for him. We are hoping to cut down on his infection by at least 50% and also for his sleep to improve since he will be able to breath through his nose now! His scheduler is supposed to call me tomorrow to give us our date. This should be interesting trying to get these two big things in during the next month should be fun as always. Better to be busy than board I suppose.
I think we are supposed to get the eval from Liam's behavior therapist tomorrow. That should definitely be interesting... We've only been waiting 2mo. to get it between her busy schedule and ours. Riley also has an appt. with D. Mehta(ie. Big Mehta) tomorrow. He hasn't seen her since shortly before the infection. We are kind of at a stand still right now for the next 4wks. She only eats a bite here and there if that and drinks a small amount of pedialyte. She is on 100% TPN and extremely happy about it and it's just nice not to see her hungry. So, I think this time for her belly to rest will be really good for her since we have been messing with it so much over the last few months. Lets hope tomorrow is a good day!
I better go get Ry's meds and TPN ready before she wakes up. We have no nurse today since I had to fire her yesterday after I caught her sleeping, sound asleep while Riley was yelling in her bed mind you, twice yesterday and she fed her chocolate pudding for lunch when she knows she can't eat that! She said she wanted it.... Omg she is 1 of course she wants it HELLO! It Doesn't mean her having horrible belly pain and problems later is worth it. AGGGHHH shoot me now! We are now left with 4 days a week with no nurse's again. I am beginning to wonder if this is a lost cause. Ohhh well, please send us some good nurse vibes this week. We have had our fill of crazy nurses for this lifetime!