Taking His 'Uniqueness' Seriously

A huge Thank You to all of you that took the time to vote for the blog on the Circle of Mom's Website we came in at 23rd place and will be featured on their site soon (to their 10 million viewers)!  Thank you!!  (I'll post 'our' badge on the page soon...when I figure out how...:)

Warning!  If you are squeamish this may not be the best post for you!  B's tummy is a bit of a mess and I (not so) happily describe it in detail below...

We did have a great Halloween and B was a 'little monster' which I thought was quite suiting.  Little did I know he'd want to live up to the title even more in the days to come...

Mr.B, my Love, my Angel, my Life and my big 'ol Stinker Pants!!

We were home for a week, 7 whole days, which was nice.  He started being 'off' on Thursday/Friday last week and I was hoping that maybe (just maybe for once) it was just teething.  I noticed that his g-tube site was more red on Friday night and certainly more painful when I cleaned it.  I didn't worry too much about it, B's had a tube (many actually) since he was 5mths old and he's never had an infection.  Granulation tissue, oh yes, but not an active infection.

I knew we could be harbouring an infection on Saturday because his pain associated with the tube had certainly worsened but it still looked 'okay'.  It was however mostly controlled with Motrin and he was chewing and chewing on his clothes (teething).  By Sunday I was thinking, "crap".  I still didn't take him in right away because, again, Motrin helped and I had no desire to put him in the cesspool of the Emergency Room at ACH.

Yay for Halloween candy, Smarties Maracas are awesome!

By Sunday night I knew we had to go in and it was reaffirmed by Dr.Cassie when I described to her what was going on.  His feet were a bit swollen and red and he was getting miserable.  So in we went.

Shockingly and thankfully the Emerge was blissfully quiet so we only had a very short wait time.  We had a new ER Dr that we'd not had before and he was great.  I love having new people meet B and ask me to 'explain' him...my first response is always, "How much time do you have?".  It's hard sometimes to not have that diagnosis, something to put a name to B. It would only be easier in the sense that the Dr's (and Residents/Fellows) would have an idea about B without needing (necessarily) the whole sordid story.  Alas, no diagnosis means I chose what 'pertinent' info they need to know and go from there.

The Dr was telling me too that he'd not seen a g-tube infection in over 6 mths but had seen 3 in the last 24 hrs...could they be catching?  Odd.  He did mention that he was comfortable treating B with a course of 'oral' meds (given via his tube).  I was okay with that, if we didn't need to poke him with an IV then great.  We had a dose in hospital and one at home the next morning.  I was on top of the world, we'd been to Emerge and home within a 2 hour window and there were no 'pokes'!

I left to take the big boys to school the next morning and B was still asleep so I didn't see his site before I left.  As I filled his prescription (and paid for it) I had a momentary thought of, "I wonder if we'll get a chance to use these".  Sure enough when I got home Justine told me he was miserable and in pain...not good.  I took one look at his site and said, "Let's go".  It was so awful to see, it had gone from red to purple and was (even more) swollen and so very painful for him.

Back into Emerge we went and we thankfully 'knew' the Intake Nurse (meaning she recognized B as a 'regular') and she put us back right away so that we'd not have to be in the 'sick' part of the Emerge since he was running a fever.  It was a short while later (it had been about an hour from when I'd last looked at his site) that I took off his gauze (goes under his bolster which is the part of the PEG that lays on his stomach) to show Karen (g-tube Nurse).  When I did I gasped, the swollen part above his tube (where it is usually hardened scar tissue) had 'burst' and there was a 'bulge' of tissue coming out.  I know, right?  I was shocked that it looked so much worse in such a short amount of time.  Karen was also surprised and told me she'd never seen anything like it before.  There was no discussion about whether or not we were going to admitted.

When we saw the Dr. she said that we'd treat the infection but switch over to IV antibiotics and go from there.  I asked for Caitlan (who is an Emerge Nurse, who knows B from Emerge, who has 'poked' him before and who is great) to possibly come and do the poke (we'd seen her when we first came in so I knew she was working).  When she came in she joked that I must know her schedule and I told her there was 'no pressure' but that she'd been personally requested to do the poke.  Caitlan put the IV in like a champ and B took it like a champ (kinda).

The choice then had to be made to what Team they could admit us on (ACH is divided into 'Teams' to group the similar issues) since B's Purple Team (chronic care kids) had no room.  I was very happy to find out we'd be put on the 'Red' Team (general teaching Team I think) and on Unit 2 (our home away from home).  The original plan had been to put us up on Unit 3 or 4 because 2 had no beds but I told them I was happy to wait for a bed on 2 since they are the ones that know him (and all of his quirks).  I know sooner or later I need to get comfortable being up on  the other Units but it is hard.  It is so bizarre to be on anther Unit when you've spent the better part of two years being surrounded by familiar surroundings and people (and I'm not a huge fan of change if you can't tell). We got B settled in (not that he was at all happy to be back) and he had a fairly uneventful night.

Back to the art of one handed play

When I got in this morning, Karen was just coming out and she told me that the site had gotten even worse over night.  She'd discussed the 'issue' with the other g-tube Nurses and none of them had seen anything like it.  Now keep in mind Karen's been doing this for 30 years and she's never seen anything like this??  Oh good grief Mr.B, you might have outdone yourself with this one.  She did tell me that she'd also spoken to the General Surgeon and his thought was that maybe it was a rogue stitch coming out after not dissolving from when the original tube went in.  It was all head scratching speculation really.  I know this kid is unique but seriously?  Does he have to challenge at ever single turn??  (Rhetorical question)

B was at least in a better mood then he had been which was a reassuring sign.  I took a quick look at the tube (the look on Justine's face told me how it looked but I had to see for myself) and it was certainly nasty looking.  The one saving grace is while it still hurt horribly, it was no long excruciating since it had 'popped' and released some pressure.

Music Therapy with Sarah (and Justine)  always makes a day better

After a good play and a visit from the Red Team the decision was made to have Surgery come and take a good look and to have an ultrasound done of the area.  Justine and I took turns (many many turns) trying to coerce B into having a nap and of course within 5 mins of him falling asleep we were called down to Ultrasound.

The ultrasound went well, B was amazingly good through it (which means many tears but the test could be completed) considering the pain it must have caused him to have the wand pressure on his 'wound'.  The prelim results I got were that inflammation was detected but that there was no abscess or mass to see.

A 'rain' drum...we've gotta find one of these to buy, B loves it!

We are currently still waiting (Mr.B and I) for our surgery consult (they come whenever they are done in the OR for the day) and I am very curious to what they will think or want to do.  The horrible thing (in my opinion) is that our beloved Dr.Brindle (who has done his other surgeries and knows him in and out, literally) is on the other side of the world right now.  It will be very had for me to put any kind of trust in anyone else but I also don't have much choice there.  Some answers, any answers (or good guesses) would be nice.

It's been awhile since I've felt this stressed/overwhelmed about a B 'issue' so I am hoping that we can formulate some sort of plan sooner rather then later.  I am terrified that the Surgeon will feel the need to pull the g-tube (surgery) out and have B eat by a NG tube again (through the nose and down the throat).  Obviously we'll cross that path when we get to it.  In the meantime I need to stop Google-ing looking for answers (and entirely grossing/freaking myself out!) and just keep the hope that we'll be able to (in the very least) have Mr.B out on a 'pass' for his Birthday this week. 

Only two more sleeps till our big boy is 2!

From Our (Unit 2, again) Home To Yours...