Um, Little help here maybe Momma?? |
I didn't do a post last night so that I could go to bed early (kinda) and take a sleeping pill. I did do that but unfortunately felt more tired this morning...I don't get this trying to sleep thing I guess! Frustrating!
Pink Jailbird! Love the hospital jammies, guess my Mom should do some of my laundry! |
Nurse Stephanie! My Momma met Steph when she was pregnant with me before she even became a Nurse at ACH so I love her that much more for altering her career path to take care of me...:) |
So about this BIG Metabolic test that has been stressing me out with a non-stop stress headache?...Monday it was postponed due to all the issues with the flood, Yesterday they came in to do the test right after he woke from a 3 hour nap (unprecedented) and told me they want him asleep for it (whaaaaaaat??) AND today we scheduled it for a time that he 'should' be napping and the little Turkey wouldn't go to sleep! I finally got him down 1/2 hr later than planned and the lady doing the test was supposed to be paged. Somehow, somewhere the page wasn't gotten and she came down after he'd been asleep for 1 1/2 hrs and he promptly woke when she put the cover over his head....seriously. I asked her if she wanted to run it anyhow and I would try my darnedest to distract him but she said if he got at all upset the numbers would be off....ugh. This poor boy has had to go without food for a minimum of 4 bloomin' hours before the test each day...no more. Dr.Volmiero called it quits to the test, it's just too much for data that isn't crucial to his wellness. Frustrating (from the inability to just 'catch' it, not with Dr.V's cancelling it).
This boy and music! He is always enraptured with Sarah the Music Therapist. |
All in all B's been holding steady at his 100 mls/hr boluses with continuous overnight feeds. He's still retchy but not full out retching (generally) which is great. Dr.V's in no hurry to push him (which is wonderful since she's probably getting pressure to get us out of here), she's willing to let him go slow and steady. We've also decided (I like to think my opinion matters here!) to do the full contrast study which will look at his whole gut, stomach to bottom (no pun intended...okay maybe it was). Yes it is more contrast (radiation) and yes, yes, yes more and more xrays but I really feel like we (the proverbial 'we') are missing something. The more Dr.V, Dr.Brindle and I talk this through it just doesn't make any sense (shocking with Braeden). How and why does he handle 250 mls over an hour for weeks and weeks to barely being able to handle 100mls in that time frame now? It just doesn't make sense, there are no real symptoms and no other major changes (aside from the retching and pain). I'm happy with the decision to look further and yes, it sucks that it has to be another contrast study but I don't think I'll be happy without it...I'm worried about him (no surprise there) and very concerned about what this means going forward with his feeds.
Who doesn't want a 'pants' hat? Yes, my Momma paraded me around the entire Unit last night like this...sheesh! |
Volunteer and Friend Dana came by for a visit. I had to show off my house and doorbell for her! |
Showing Nurse Jenny how to clap! |
On the flip side Mr.B's been coughing more and more the last 24 hrs...but I am trying to ignore it (not really). Fingers crossed and positive thoughts that this is just passing through please!
Life continues to be difficult in terms of finding our (my) balance but at least some of that will be alleviated even further with the arrival of the Grandparents. School is 'officially' out tomorrow and summer is upon us. Adventure awaits...(if you don't count this non-stop adventure ride I'm already on).
I wanted to share with you the most amazing quote that I came across today as well:
"Perhaps strength doesn't reside in having never been broken
but in the courage required to grow strong in the broken places"
but in the courage required to grow strong in the broken places"
I simply love it!
From Our Home (Hospital Room) To Yours...
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