My Heart Is Heavy And Sore

It's been a 'defeated' kind of day, a hide my head under the covers or burst into tears at any bizarre thing kind of day...now before you all get concerned, it will pass.  I bounce back, I always do but sometimes you just need to give in to a rotten day.  I gave the shortened version on Facebook earlier but this is the longer, more frustrating version if you feel up to it.

The good news is that B now has his NJ tube in and is getting a steady stream of Pedialyte.  He has actually pretty much left it alone thus far (aside from rubbing his nose) which is good because if he rips it out he's not getting another one.  I'm refusing (which I don't do often) anymore attempts at NJ insertion.  It might sound like an over reaction but when you read how our morning went you might agree.

First off let's go back to another story when Braeden was having an NJ inserted, the post Code Blue, I think this is a good start to realize how my anxiety level was this morning.

I pushed to have B's NJ inserted in Radiology for this reason because I stressed I wanted someone to have a good deal of practice doing complex kids.  I'm not discrediting the Nurses here on Unit 4, they've been quite lovely, but if he had to be x-rayed I figured we might as well kill two birds with one stone and do it down in DI.  Did I mention that I stressed that I wanted someone experienced (am thinking I might start questioning people for a CV before they lay hands on this kid!)?

Our 'before' shot with the lovely Dana

We got the call to go down at 10:30am and Justine had another appointment so the wonderful Dana offered to come down with us.  Off we trouped, B curious about where he was headed and me trying to control my breathing.  Unfortunately it was all too soon that B realized he was headed right back down to DI (we were there yesterday as well).  We did have the same great Nurse as yesterday though so she made sure he had a nice warm blanket and made him as comfy as possible whilst strapping him to the board.  I got the joyful Parent job of holding his hands over his head and singing in his ear. 



The 'board'

A small idea of what happens on an NJ insertion is:
1) a yellow tube (end covered in jelly) is inserted through the nose
2) it's then fed down the back of the throat (while my child gags non-stops, screams and chokes)
3) the tricky (and dangerous) part comes when trying to feed it through his fundoplication (stomach wrap)
4) Once in the stomach a 'wire' is fed into the tube to make it easier to guide (and hopefully not perforate anything)
5) down through the stomach and (fingers crossed) you hit the pylorus on the other end
6) after that it should 'rest' in the jejunum (small bowel) and the wire is removed
This is all done while the x-ray is running so that the technician knows when they've hit the right spot.

I wasn't watching the x-ray screen at all since I was 100% focused on B and watching his face for reactions.  I knew she was struggling somewhat but I just kept singing (and crying) and watching him since choking can equal aspiration in a child like Mr.B.  I had to actually stop her at one point and flip B onto his side since he was choking/gagging so much.  She finally got to the point to put the wire in and I kept telling B that we we're almost done...okay now we're almost done...okay, NOW we're almost done...now??  It was then that the Radiologist turned to me and asked "Had he had any gastric surgeries?"....WHAT???  I actually asked her to repeat herself since I honestly wasn't sure if I'd heard her correctly...."Any gastric surgeries?".

"YES HE'S HAD GASTRIC SURGERIES!  He's a Ladd's kid!  It would be in HIS CHART!"  Her answer? "Oh, that makes sense now."  We had a Technician that hadn't READ his chart???  I can't stress enough how complex Braeden is, he is nothing like a 'typical' kid and no procedure with him should be entered lightly or INEXPERIENCED!  I'm sure my blood pressure was in dangerous territory.  I'm pretty sure I was cursing under my breath at this point just to keep from completely tearing a strip off her while my poor child lay screaming beneath me.

To top it off the Dr wanted to pink tape the tube to B's little sweet cheeks until we got upstairs to tape it properly.  Pink tape is the equivalent to putting duct tape on your skin (I know, I had it all over my belly when we were in the Maternity ICU) and then needing to pull it back off right away.  Dana (bless her) and I finally gave up on letting them tape him at all because the white tape wasn't sticking and they didn't have the proper supplies.

It would have been funny if we'd not had such a stressful experience but Dana and I did a shuffle sidestep walk all the way back up the four floors to Unit 4.  Dana had her finger at his nostril the whole time trying to keep the tube in place and navigated the IV pole while I carried him.  I'm sure we looked a bit odd to say the least.

It took a team of 5 of us to get a tape job that was somewhat satisfactory (after having one attempt ripped off and started again).  He's taped within an inch of his life so that he can't rip it out but at the same time looks as though he's been through a train wreck.  It was during the taping that I was certainly missing our Unit 2 crew and their dealings with children like B and B's size.

My sweet, precious child

It took a long time for Braeden to settle afterwards, he was exhausted but couldn't relax enough to go into a deep sleep.  I just lay with my hands and face on him trying to give him some reassurance and tried to soothe the guilt from my heart about the whole experience.  (Yes, I am aware it's not my fault but you have to realize how damaging it is on a Mother's heart and soul to have to repeatedly hold your child down while others do things to their bodies.  It is a horrible experience in the best of circumstances and I've had to do it more times then I would ever care to count in the past two years.)

Mr.B did manage to perk up a wee bit this afternoon but for the most part was just pretty low-key.  I left to go get the big boys from school and get them sorted out.  When I got back tonight just after 5pm B did not want to be touched at all.  He did permit me a small kiss but otherwise he made it very clear he wanted hands off.  He had a Nurse in here with him when I got here and she said she'd tried to cuddle with him and he wanted nothing to do with it.

The major concerning factor for me is that I've now been right here beside him for 5 hours and he's not moved.  He's been in the same spot in bed (aside from me changing his bum) and doesn't want to play, doesn't want to interact and doesn't want to be touched.  He's not upset but he's certainly not happy and he's most certainly not himself.  He's had one large dark green jello stool (you're welcome) but no fever.  I've consulted with the Pediatrician and expressed my concern and she's agreed that things aren't 'right'.  I know he's still sore (his g-tube site is nicely bruised up) but it's more then that.  I am hoping desperately that I'm wrong but it would seem as though he's fighting something, that we've moved on to something new...(tear rolls down cheek).

It is so hard to see my active, crazy, playful little guy just laying in one spot.  I'm not concerned with anything Neurological, he's attentive to what he's stimming on (crinkly ears of toys) and there is no fever but he's not at all acting B-like.

My mellow lil dude

So urine sample bag on, stool sample waiting to be taken and blood work was just drawn (yes, I'm that concerned that I let them poke him even after his day today).  Tomorrow we'll see what all of this or any of this tell us.

My heart is heavy and sore for my little duck and it was by far a rough Momma day today.  The good news is that my lovely Mother is flying into town tomorrow (the big boys will be very surprised and happy) so I'll have an extra pair of hands around which are much needed these days.  I know my limitations and after this many admissions back to back I need help, I'm done.

The other good news (yes, there is always something to be thankful for) is that they are still pushing to have us moved back to our Purple Team now that the surgery is behind us or in the very least Blue (less complex kids but at least not a 'teaching' team).  Fingers crossed that we'll be able to be 'home' again on our Team and with those that know B.

On a side note I also have a lot of thank you cards to write (which might be awhile) for all of the thoughtful and lovely gifts Mr.B received for his Birthday AND I'm behind by three 'Blankie Stories' so I do apologize for that (I know you understand but it still needed to be said). 

I also owe (yet another) huge thank you to one of the best friends a girl can have, Lorna Z for the dinner in my oven and the groceries in my cupboard (she divided up her own groceries and shared with me!), Love you girl!

Tonight my hope is that B will finally get a good rest and gain some strength back.  I am aching to see that smile and hear his amazing B laughter again as it's been far too long. 

A hard day but tomorrow is a new day. 

From Our Home (Unit 4) To Yours...