Monday, 11 November 2013

Pressure Ulcer and Mr.B's TWO!!!

Keep in mind I said no presents...
Oh what a week it's been!

On the happy side of the street Mr.B is TWO!!!  We were blessedly discharged on Thursday afternoon (B's actual Birthday) although he wasn't in a 'better' state per se.  My sister Mobee and my nephew Rafe flew into Calgary on Thursday night to spend the long weekend with us so that was a pretty good Birthday present for Mr.B!  There wasn't much fan fare on the Birthday day itself as we were all 'hospital' tired but we did get to spend the evening as a family and the big boys got to eat some lemon/chocolate cupcakes.  Daddy blew the number '2' candle out for B and it was official!

B's Birthday feed bag!
I'm not too sure why but B's second Birthday has actually been more emotional for me then his first.  I think because the first year of B's life it was just living through the shell-shock of Braeden but the second year showed us so much growth and happiness from our amazing little man.  I had a lot of 'flashbacks' leading up to B's Birthday this year as I reviewed the last two years in my head.  I'm still astounded that not only is he alive but he is still the happiest and social little man you can meet!  It hasn't been an easy road (not that any road with raising children is) but it's been so rewarding in multiple senses.

Mr.B has taught us, and continues to teach us all, the power of positivity and forgiveness.  Through all of the pain, procedures and hospitalizations he smiles  (after screaming of course).  He's got more scars on his little body (one for each poke) then some people gather in a lifetime and he's endured more trauma then any child should and still he smiles.

And the presents continued...

Friday night was the big celebration with friends (and their families) and it was a wonderful party.  Thank you all of our friends that could make it and for the ones that couldn't you were missed.  Of course not many of you that attended heeded my urging not to bring a present but you're forgiven nonetheless! ;)  As you can guess, B got spoiled and the big boys had a night of fun and laughter.  Mr.B proudly crawled his way around the entire party, showing off for anyone that was willing to watch.  He was thrilled at the level of noise and attention but was also just a tad over-stimulated!  A huge thank you for those of you that helped with the prep and set-up (Kelsey, June, Lorna and my amazing sister) and the whole lot of you that helped with clean-up.  It took us 2 hours to set up and only 15mins to clean up!  Wow!  I also need to send an enormous thank you to Gloria for 'gifting' us the rental of the hall...amazing and humbling!

Make a Wish on a star for Mr.B

Our thank you key chains

My helper and sister look-alike Kelsey

Wishing Well, "Close your eyes and make a wish"...
We raised over $400 for Alberta Children's Hospital!
We have some amazingly generous friends!!

Sister extraordinaire!
Just a few of the 'wishes' for Mr.B
Saturday night took us abruptly back to reality however when B was experiencing more pain then I'd ever seen him in (aside from his surgeries and such).  The pain around his g-tube site was excruciating and his 'mystery' area (the open, protrusion on his stomach) had turned purple again.  I was so sick to my stomach when I got home and saw the amount of pain he was in.  Back into Emerge we went (with my sister in tow) trying to seek out an answer. 

The Intake Nurse took us back right away and the Nurses were all great at keeping hands off until they were needed.  It was a new (to us) Pediatrician again so we went over the last week of the admittance and she called for a surgery consult.  Then we waited, and waited and waited.  I had to laugh because I said to my sister that I wouldn't be surprised if when the Resident did come that she'd be dishevelled (woken up).  I'm pretty sure that's what happened since she walked into B's room yawning and bleary-eyed.  Of course it took her over three hours to get to us (from upstairs in the hospital) so I'm pretty sure she fell back asleep after the first page!

The Resident (once fully awake) didn't think that the infection was any worse but that we did need to treat the pain.  We both agreed that being an inpatient was not the best scenario for anyone involved and that we'd try out best to 'wait out' the long weekend at home.  Her initial thought was that it was actually a pressure ulcer.  I can see how that might be the case but she also went on to tell me that they are incredibly difficult to heal and that the tube would most likely need to be pulled out.  There are many awful things that that would mean, to 'pull' the tube: 

1) It has to be surgically removed 
2) There is no alternative to use for a g-tube with B, we've tried them all, B's stomach is so small that there is not other option that can work 
3) It would mean another surgery to replace the existing tube and it would be a new site for the g-tube (6 weeks of healing time for the new tube and a good deal of pain to go with that) 
4) We'd have to go to NG tube (through the nose and down the throat) feedings in the meantime...B hates having an NG tube in his nose let alone having to have one repeatedly inserted because he'll pull the skin off his cheeks to get rid of it

What she did do is gave me a prescription for a low-dose narcotic for B and told me she'd go over the plan with the Surgeon in the morning and call me.  I did get a call but not till almost 3pm the next day and the Resident that called (not the one from the night before) said that I shouldn't be using the narcotic at home, he needed to be monitored.  Sigh. 

Ironically, I hadn't filled the prescription yet for B since I was just trying to keep on top of dosing him with Tylenol and Motrin combined (since there is a slight risk of children stopping breathing on the narcotic and B loves to be that 1%) .  I asked the Dr what I was supposed to do about his level of pain and she replied that she was only calling about not using the drugs, that she didn't know the whole case....double sigh.  Needless to say all I got out of the conversation was to bring him in if things worsened or we couldn't handle it (big surprise and triple sigh).

The good news is that the pain hasn't gotten any worse and the site does actually look moderately better.  Of course the pain hasn't really gotten any better and if I'm late on his Tylenol/Motrin then he lets me know.  I'm bathing him twice a day and soaking off the gauze and washing the area gently with soapy water.  Afterwards it is pat dry (oh so gingerly) and a new gauze is put on.  I've completely backed away from changing the gauze more then that and am not using anything else on the wound.  It does seem to be making a small difference and like I said, it's not any worse.

 The 'plan' from here is to get in to see Dr.Brindle asap (she's back from Asia tomorrow) and see what she says about all of this.  Dr.Brindle's opinion is the one that I'm waiting for and she is the one that will be able to tell me what our best case scenario should be at this point.  Needless to say it looks as though our lives won't be getting easier this week but we'll do what has to be done.

All I need to do is tell someone that "I have a 2 yr old" and a smile is back on my face!

From Our Home (yes, Home for now at least) To Yours...

1 comment:

Anonymous said...

Was with you in spirit....