Tuesday, 26 November 2013

Blankie Stories VII - Amber Wagemakers

Yep, I love it!
The special Blankie came to us from Amber who first saw Mr.B's story on CTV news National coverage of one of our blood drives.  Amber has two wonderful little girls and her youngest is only a few months older then B.   She's always been available to offer words of kindness and support. 


Here are her words to Mr.B:

Dear Mr.B,

Hello!  You and I have never met but that hasn't stopped me from feeling I know you.  Your mother has done a fantastic job of sharing your story and tales of your triumphs, joy and passion for life.  It's unfortunate that so much of your success stems from over coming the many medical challenges you face.

I want you to know that in following your story, you and your family have given me much strength in over coming challenges of my own.  I am grateful to all of you for that.  I was very happy to find out I could do something for you to bring you comfort during your struggles. 

It also gives me a chance to pay back the strength I feel I've gotten from your story.

I had taken up crocheting in an effort to bring healing to myself so I'm happy to pass a healing gift onto you.   I hope you like it.  I tried to leave some open spaces for you to stick your fingers through.  I've seen pictures of you doing this and hoped this is something you enjoy in a blankie.

Much love to you and your family Braeden.


A huge thank you to Amber, it is a beautiful Blankie! 

I had to laugh, I was opening the package it came and Mr.B was sitting in his tumble form chair watching me.  I pulled the Blankie out and B literally put his thumb in his mouth and reached his hand out to grab it.  "Yeah, that's for me Momma."  You can see that he certainly loves it!

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

Monday, 25 November 2013

A Change In Plans...Big Surprise

I had plans to post another "Blankie Story" tonight but I am just too keyed up and annoyed.

It's been a long day.  Long story short B doesn't have his PICC line in, it got cancelled.
Hanging out

The longer version is that Dr.Stockdale cancelled it with the hopes of starting to use the g-tube today and building up to his full (continuous) feeds over the course of three days.  The 'hope' is that his regular IV holds out until that time to continue to run the TPN (to compensate for calories).  I get it, I see her side and where she is coming from and even agree somewhat BUT when you have a 'plan' and it changes dramatically it is hard.

I have to respect her decision (yes I would have fought it if I didn't think it was slightly possible) but it is hard when I know Dr.V so well and she knows B so well.  Dr.Stockdale did say that she might be eating her words in two days....it might come sooner then that.

B's g-tube has been doing okay all day, not too much 'leakage' (he's only getting 5mls an hour) and he did have some personality again.  He is STILL not moving, he has no energy and he is STILL losing weight.  It breaks my heart to hold him and be able to trace every bone in his body with my fingers...awful.

The 'eating of the words' might be coming tomorrow if I am right (which I think I am and is why I am so annoyed).  I came in tonight and took a look at his g-tube site and it is red above it.  It is turning RED where it all started, in the scar tissue over his g-tube.  All of this started with the scar tissue turning red, then swollen, then bursting.  It isn't very swollen yet but it is red and to an 'untrained eye' (who hasn't been here for the past 10 days) it wouldn't look like much.  Which is what his Nurse said to me tonight when I pointed it out.  I asked to speak to the Resident and got told she'd talk to the Charge Nurse...which is fine, there are 'protocols' after all.  His Nurse (who hasn't had him before) asked me to show here 'exactly' what I was seeing.  I showed her the redness again and got looked at like I was imagining things.  She's not been unkind at all, the opposite actually but she doesn't believe me and that sucks.

The annoying part is that the Charge Nurse didn't even come in, I got completely brushed off.  I was told that there is nothing that the Resident would do for the night and that I would have to wait until morning and they would re-evaluate it then.  I HATE being brushed off.  I know what I am seeing and I know what is right and what is not on my child.  B is rubbing at his tube (which is what he did when all of this started) and he is flinching when I go near it again.  It hurts.

I got offered calmoceptine lotion to put on it, which would do nothing, and tried to explain (yet again) that the pain is on the inside...sigh.  I am torn now, do I stop the feed and be 'The Paranoid Mother' OR do I let it go overnight and risk it being more painful for him in the morning (but then at least it might be more 'noticeable')??  I don't know.  Damned if I do and damned if I don't tonight I think.  I hate to cause him any discomfort but I also need them to know that it is real and it is happening.

Could I be wrong?  Sure, of course and if I am then I'll eat my own words but if I'm not then we've lost yet another day of healing AND he'll still need the PICC line put in.  Can you see my frustration?  My son is shrinking before my eyes and it is so hard to see him not moving.  He's got no extra energy and it is awful.  I feel like I am helping him starve...it sounds harsh because it is.

Who knows what tomorrow will bring...maybe a PICC line or maybe just a paranoid mother admitting she's wrong.

The 'good' news is that I think I may have found a g-tube (that is only available in the US) that might work for him and the attachments that are available in Canada fit it too.  I would have to pay out of pocket for the device but it will be well worth it if it works!  I met a new friend tonight who ordered one for her son through a medical exchange and has loved it.  She was so kind to chat with me and to take the time to talk about their own journey with the g-tubes.  There is nothing like meeting a fellow parent with things in common that only another parent with a child like ours could possibly understand!

So, as always there are positives to the day but I'm still in an annoyed mood.  It could also have to do with the fact that it is 11:30 and B is wide awake.

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

Sunday, 24 November 2013

Blankie Stories VI - Kaela and Lauchlin

I've been behind on our 'Blankie Stories' and for those of you that have sent us blankets, Thank you!!!

This is a special blanket from a special lady who also knows the ins and outs of a NICU.  Kaela and Lauchlin are relations on my husband's side of the family and we were pregnant at the same time.  I can remember my Mother-in-law telling me when Lauchlin was born and how worried she was for all of them.  I remember thinking, wow, this Momma's got a big fight ahead of her!  Kaela has her own NICU miracle little man, Lauchlin who was a whopping 1 lb 15 oz when he was born at 25 weeks. 

Kaela's words:

We were both actually pregnant at the same time...little did we know at that time that dramatic turn our lives would take.

Lauchlin was born at 25 weeks very unexpectantly (I was actually at work 2 hours before he was delivered and drove myself to the hospital hahaha. So stubborn). Upon delivery of our 1lb 15oz boy, he was rushed into NICU for them to do their magic. He stayed at the NICU for just over 3 months and managed to only need 1 surgery (laser eye). He was scheduled for more but always seemed to heal himself just in the nick of time. He ended up having a vp shunt put in his head at 5 mos old because he has hydrocephalus (excess fluid in the brain) but came out of that with flying colours. He's had one surgery since and will need more as he grows but that's to be expected. He's a happy healthy boy and has recently just hit the growth charts for his actual age! We're super proud of him and know he'll do great things with his life...

An amazing family and a story that can certainly be seen as inspirational.

B loves his green and white blankie, it is different from any others that he has.  He loves the different textures in it and that he can get those fingers in there between the threads!

Thank you Kaela and thank you Lauchlin, we sure hope to meet you one day soon!

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

Saturday, 23 November 2013

Going Nowhere Fast

So the hope is that after two days of running a blend of 1 part formula and 3 parts Pedialyte that B should be perking up a bit....or not.

Not too impressed with the world around him

Mr.B at least had a decent night last night since we reintroduced the Ketorolac (pain med) around the clock.  He hadn't been in as much pain, he wasn't himself, but not in as much pain at least.

Hi Grandma
Auntie Lorna came in for snuggles this morning since the big boys were off school so I got to the hospital around lunch time.  Mr.B was the same as yesterday, not any better,  but not any worse.  He has certainly gone from not wanting to be touched to needing to be on Momma 24/7 though.  I had planned to go get groceries and leave Grandma at the hospital but I just could get around to leaving today.  My gut was getting louder as the day went on and B didn't want to move.  I had to change his bedding at one point and his was so uncomfortable when I had to move him.  By this afternoon at 3 I thought enough is enough and called in the Dr.

I explained what I was seeing (or lack thereof) and again expressed my concern that his pain levels had been increasing since the NJ went in.  I again voiced that my biggest fear was that he'd been perforated upon NJ insertion.  He was just so unsettled (didn't nap yesterday or today really) and so uncomfortable that I asked to stop the feeds.  I knew he wasn't getting dramatically worse but he was certainly not showing any signs of improvement either.  She agreed with me that maybe we should take a look at the bowels and ordered an abdominal xray.

Once again we trouped down to DI and Mr.B was a such an amazing superstar considering this is the third time in as many days as he's been strapped to 'the board'.  We got back upstairs and within a short time the Dr. came in.  She said, "the good news is that he doesn't have a perforated bowel....not so good news is that there is an Ileus there"...again.

That would explain the increasing pain.  Dr.Brindle just happened to be at the desk when she was reviewing the xray and so she could weigh in on it as well.  They decided to try to keep running a 1/4 formula blend nice and slow to try to push through the Ileus.  I was fine with trialing it, it made sense.  He's SO in need of calories.  He went without ANY calories for five days and has only been getting a slight amount of calories for the past two days.  His body has burned through what tiny amount of stores he had and he's even gone back a size in diapers.  So that is why I agreed to try running some calories.

Our friend Peter playing the Kalimba for Mr.B trying to perk him up a bit
He was just desperate to be held tonight and I couldn't move let alone put him down.  I knew he was still uncomfortable but it was mildly improved from earlier in the day.  I finally shut it down at 7pm tonight and called for the Resident.  He was thrashing in my arms and I couldn't calm him down.  I'm not a Mom to ever hit the Nurse's button but it got hit three times in an hour tonight so she could see what was going on.  By the time the Resident was able to come to us (an hour and a bit later) he'd actually been settled for a bit in my lap and was just chilling when she came in.

She was able to examine him pretty decently and he was fairly calm while she touched him.  He only got really uncomfortable once she got to the lower abdomen.  I was hesitant but still open to trying just Pedialyte at a rate of 20mls/hr (a dribble) so that he'd at least still get a few calories over night.
We've taken to having 10 min catnaps

The Nurse came in, hooked him up and let me know she was going on break.  He lasted a total of about THREE minutes before he started writhing in my arms again.  DONE.  Shut it off, we're done.

It was all I could do to get him to settle down tonight (not in my arms) and I crept out quietly as he was drifting off feeling confident he'd be down for the night.  Apparently not.  SIGH.  I called to tell his Nurse that I'd left for a bit since she wasn't around and she told me that no, he was wide awake and upset (which is what every Mom wants to hear).  She said she had to change his dressing on his IV (argh) and we woke up...uh, yeah.  So I'm here at home feeling guilty as hell but exhausted as well.
Nope, not sleeping

I also asked if she'd informed the Resident that I'd 'shut down' his feed and she said yes but that the Resident wanted to try it just one more time to see what happens.  WHAT?!!  How can a Mother telling you he's writhing in her arms not be enough of a 'trial'???  I told the Nurse in no uncertain terms that I said NO, he is NOT to get anymore feed or Pedialyte tonight and to put it in the file as such.  So now I'm not only feeling guilty but mad to boot.  The thing is that Mike has to work in the morning, it's already midnight, I'm tired (yet wired on stress)....and on and on goes my mind.

I am just simply hoping that it is only (!) and Ileus causing all of this distress and that maybe just maybe I might get to see a small glimpse of Mr.B tomorrow coming through.  It has been a week since Mr.B has been Mr.B and it is so hard to see.  It is also so very hard to make anyone that doesn't know him understand just how 'bad' he's feeling.  I'm sure you can tell my frustrations are running high.

I'm hoping that between Dr.V and Dr.B tomorrow we can formulate a plan that will include feeding my son and getting him stronger while also giving him the rest and support he needs.

Tomorrow is a new day...a chance at a better day (let's go with that).

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

Wednesday, 20 November 2013

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...

Monday, 18 November 2013

One H-E-L-L Of A Weekend

You know how people always say to me, "I don't know how you do it!", and my response is, "You just do."?  Well this weekend was a just don't kind of weekend.

Heading into Admitting on Friday
After I wrote my last post I literally drove home and took some pain meds and went to bed (at 2am).  My 'plan' was to sleep for a few hours, get up and be back at ACH before Mr.B woke up.  I did in fact get up at 5:30am (head still pounding), showered and then sat on the edge of my bed in my towel trying to will myself to get up and get dressed.  My headache was worsening by the minute so I laid back down, telling myself that B would be okay without me for a few hours and fell into a fitful sleep.  I realized at 6:30am that things were not in fact getting any better, even with pain meds so I texted Justine (poor girl, good thing her phone was on silent) to see if there would be any way she could go in to be with B for a few hours while I slept.  I really didn't want to miss out on the surgery rounds and any decisions that were to be made about B's stomach 'hole'.  What I didn't realize was that I was at the very start of a very long, painful weekend with the FLU.

You certainly don't need all of the blessed details of what happened in the hours after that but thankfully Justine was able to go into ACH and be with B until Michael could get there.  I was down for the count and I was so sick that I couldn't even begin to be mad or feel sorry for myself.

This was a weekend built on trust, on hopes and on letting go of my (iron-clad) control over B and the medical decisions around him.  I had to let it all go, I didn't have a choice and it was horrible.  Certainly a weekend for 'growth' for all of us but still horrible nonetheless.

***(Please don't think for a moment that my husband is not involved with B and the decisions that need to be made.  He is very much involved but while he sacrifices time away from us to bring in our much needed income I am B's champion 24/7)***

The decision was made on Saturday afternoon that yes, B would in fact need surgery and it would be happening that day.  The final verdict was that B's feeding tube had come out of his stomach (internally) and was sitting in between his stomach lining and the wall of his abdomen.  It was causing so much pressure that the skin swelled (what we initially thought was infection) and finally broke through (hence the 'hole').  The 'good' news (?) was that it was thought that the cup (what goes in his stomach) was still inside the g-tube tract.  The best I can describe this, without drawing a picture, would be to have your earring stud in your ear get pulled backwards so that the 'stud' part gets trapped in the hole (or the tract).  How is something so incredibly painful good news?  It meant that the feed he'd had the day before hadn't gone into his intestinal cavity, that most of it in fact had been contained in his stomach (and then bled out through the 'hole').  He did in fact have some feed leaking into the surrounding tissues but it was not nearly as bad as it could have been.  It was partially the cause of all of the irritation and breakthrough.

All I knew from my sick bed was that my sweet baby was about to go into surgery and it didn't matter how much I tried to muster the strength to go and be with him, I couldn't do it.  I couldn't get out of bed.  I was literally unable to go to him, to be with him and to comfort him.  As I mentioned, horrible.  I also had to put trust into a Surgeon that I'd never met, one that I couldn't look into his eyes before he wheeled my baby away.  I had to put trust into the Anesthesiologist that they would review his file in fine detail and know just how complex he is.  I had to trust in the Post Op Nurses that they would know he would need oxygen help coming out of his anesthetic and I had to trust in B to fight, to make it through without me at his side (yes, the tears are falling as I typed that).

I finally also realized that I was now too sick to even feed my poor big boys at home (they had been fending for themselves all day and watching tv the poor kids).  I called my neighbour/friend and asked her for help.  (I just want to point out, this is not something that comes easily to me, ever.)  Angie thankfully came over with her son, fed my children, entertained them, put them to bed and even tidied up my kitchen and took out the garbage.  (All this while offering to clean out my throw up bowl...whadda gal!)

Michael sent me texts to keep me up to date and I tried to call everyone (Grandparents and sisters) to keep them informed (not very successfully).  They didn't take B into surgery until 8pm Saturday night and they expected it to last an hour.  I was a wreck for that hour, thinking they took him as the last case of the day because they didn't know what they would find.  Thankfully my Husband gave me the thumbs up as soon as he knew and told me that it had in fact been a straightforward surgery and all was well.

The good news (?) was that they didn't call Michael into Post Op so it meant that B was coping well (in Aug I was called into Post Op to find a blue Mr.B).  Michael said he was in decent spirits when they brought him back into his room (he had been inconsolable for over 8 hours last surgery in August).  I know just how stressed out it made Mike though as he sat up all night with our friend Jodi (who went at 1am after work to watch over him (them) knowing how worried I'd be).

I think Michael came home sometime around 7am and then had to run out to grab milk (I haven't grocery shopped in  almost two weeks with everything that's been going on with B).  He crawled (literally) into bed sometime after 8am after making sure the big boys ate breakfast.

I was really hoping so much that I'd gotten lucky (!) and gotten the 24 hour flu that has been going around.  Not a chance.  No 24 hr lottery win for this Momma.  Sunday found me not quite as sick as Saturday but not much better either.

Michael got only a few hours of sleep before heading back up to the hospital to see B.  It was so hard to admit that again, I couldn't go.  I was able to slowly crawl out towards the light at the top of my pit through the day but I've still not made it to the top.  Yes, I know, I'm worn down.  Yes, I know, I'm sleep deprived.  Yes, I know, I have a life of extreme stress at times.  BUT I really wanted to believe that if I thought hard enough and believed hard enough that I could feel better and be strong enough to be able to go to B.

Needless to say, Justine and Chad stopped by to take the big boys out sledding (which made their weekend) and I did not get out of bed.  Thankfully Mike told me that B slept most of the day/night Sunday anyhow due to the anesthetic wearing off.  I did drag myself out of bed long enough to make freezer pizza for my children (which they were thrilled about!) and get them into bed (and apologized profusely for not being Superwoman and thanked them profusely for being amazingly wonderful to their sick Momma).  It was a hard weekend for the boys, I won't lie.  They were bored, they were worried knowing B was in hospital and they were out of sorts since Mom and Dad had done a role reversal.  They trouped through it though, and we all survived.

Michael came home sometime around midnight last night and fell into bed only to have to wake to his alarm at 5 to get up for work (<--I love this man). 
Helping Justine tape himself back into his IV cast

Smarty Pants!

Good helper!

I had enough energy this morning (just) to get up and get the big boys off to school (although not on time, damn the lack of superpowers).  I came back home with the intention of sleeping this morning (knowing Justine was with B) and then going in at noon.  Unfortunately like any other Monday the phone rang off the hook so no sleep was to be had but I did rest.  One of the phone calls however was from Dr.Brindle (B's regular Surgeon) calling to give me a report and answer my questions the best she could as she didn't do the surgery.  I did certainly feel better after that phone conversation!  I asked for help (ugh) on Facebook for a sidewalk/driveway shovel and my friend Jen P drove over and shovelled for me while her son napped in the car.  It was a wonderful thing to come out of the house to, thank you again Jen.

Finally some Momma snuggles (although he ripped
 the mask off my face shortly after this shot).
I had been fever/etc. free for over 24 hrs and was desperate to see Mr.B so I headed up to the hospital.  Of course I knew that once he'd see me he'd not be 'happy' anymore and he was even less impressed because Momma was dressed up like the medical staff, gown and face mask.  He was very happy to be held and cuddled though so we both got to breathe a little easier.  I didn't stay long though (it took a hell of a lot of will power to leave) and picked up the big boys from school.  I was done by the time I'd picked them up, run my engine dry.

I did however chat with Dr.Bailey (Pediatrician in charge of the Gold Team B is on right now) and did give the go ahead to start running pedialyte into his g-tube to see how he handled it.  It was started after I left and Justine oversaw it.  She did however text me and then call me to let me know that it was bubbling back out through his g-tube (around the tract, not through his 'hole').  They had stopped it for then and were waiting for surgery to come by and figure out the next step.  The bolster (which sits outside the skin) is still very loose while everything heals so it could just be that the g-tube is loos therefore leaving room to leak.  I won't know the answer until Michael comes home from the hospital tonight to see how it all went or what was decided.

The hope is to trial him on Pedialyte over the next 24 hrs and then maybe try to slowly reintroduce food.  I'm more nervous for his intestines (Ileus) then for his stomach in all honesty.  I am hoping that they will keep to their word (Gold Team) and follow my lead and take it slow for B.  I would hate to have to spend any extra time in hospital due to B's guts being pushed too far too fast.

B was for the most part in a good mood this afternoon (aside from being very uncomfortable with too much movement and being very unimpressed with the 4 hr round the clock Tylenol suppositories).  I was not happy to find that he didn't have regular pain meds scheduled that they were only 'as needed' when I got there.  That changed quickly.  He is certainly not back to himself but that's only to be expected.  Hopefully once the pain subsides some more and he can start to get real calories again then he'll start to perk up.

All in all it was a HELL of a weekend but we all survived.  It was a good weekend for Michael and B because they got to spend a great deal of Daddy and B time together.  It was a good weekend for Mike to get to see more of the ins and outs of the hospital life.  And yes, it was a horrid weekend for me but a good weekend in regards to some personal growth with letting go and having to put my trust out there.
Just chillin'

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

Saturday, 16 November 2013

There's A Hole In His Stomach Dear Liza...

Oh Dear.

Dearest Braeden,

Mommy is beyond tired, stressed and anxious right now.  Could we please have a few hours of sleep?


Your Momma

The new style for winter, the foot IV boot

It's been one hell of a day and as I type this we are (thankfully) at the very cusp of a new day...I need a new day and need to leave this one behind me.  Where am I you might ask.  Well at Children's Hospital of course, where else would I  be blogging from at 12am? 

Let's go back a few days...

We couldn't get in to see Dr.Brindle on Tues but we were able to see her on Weds.  B's pain was 'tolerable' when he was on a constant flow of Tylenol/Motrin combo.  I was saying 'screw it' to everyone's advice and went with my gut.  I was bathing him twice a day with good ol soap and water and putting on single gauze on his g-tube/wound area.  It was looking better, not great but the best it had been in over a week.  Off we trooped to see Dr.B on Weds and we were sure happy to see her!  Dr.B felt confident that it was an over growth of granulation tissue (keep in mind she hadn't seen it at it's 'worst').  The thought was that he'd had some pressure on his skin, just enough to break the skin and got some of the 'infection' (I don't think he ever  had an infection now) in the skin and it reacted by pushing out a rapid growth of granulation tissue.  Sounded reasonable to me.  Dr.B said she'd seen things like it before and it would be best to treat it as such.  Remember how we 'treat' granulation tissue?  Yup, good ol silver nitrate burning.

Ironically I had a Nurse comment to me the other day that the silver nitrate is supposed to be painless...um, no, not painless.  Apparently (since I had to ask the g-tube nurse) 90% of people don't find it particularly painful and the other 10% find it excruciating...guess where B falls?  Excruciating.

The decision was made to treat it as I well know and have seen with treatment it heals faster and easier.  It took three of us to hold him down and get the treatment over with.  Braeden bucked and fought horribly through it and I might just have had a tear or two fall.  Do you know how awful it is to hold your child down so someone can willing inflict pain on them?  Indescribable and I have to do it ALL the time.

He was incredibly sore after the treatment but I had high hopes that it would heal quickly and we could move on to the next Mr.B crisis.  Ha.

We had a busy day Thursday and B spent most of it in his stroller without much crawling around.  When we finally made it home he crashed out for a three hour nap.  When he finally woke up he was miserable, in pain and miserable.  I knew it was bad because I put him on the floor and he wouldn't even crawl out of his room (this kid lives to crawl).  I got some more Motrin into him and he seemed to settle somewhat but was still pretty unhappy and uncomfortable.  We had an incredibly rough night last night as well with him waking several times and just unable to settle into a deep sleep.

This morning was not much different except for one small thing...okay, not small at all, his 'wound' site was awful.  It had swelled up and was so painful.  The problem with the swelling (well one of the problems) was that the bolster that is supposed to lay flat on his skin was now on an angle which makes it even more uncomfortable (fluid/food leaks around it).  Justine and I got him into the tub and got it nice and clean but I knew we'd have to at least go into surgery clinic.

I called the g-tube Nurse and we chatted back and forth a few times.  She paged Dr.B and we were waiting to hear back what she wanted to do.  In the meantime B was very unsettled all morning, we knew he was hurting.  He also started leaking a good deal of his food out onto his sleeper (from which I assumed was around his g-tube site because the bolster wasn't flat).  We actually couldn't even run his 12pm feed as it was leaking and hurting too much.  I finally got the call that Dr.B wanted him as an in-patient to see this through and to put him back on the IV antibiotics.  The call was put in to find him a bed and we got the call at 1pm that they did have a bed on Unit 2 (yay) but that we'd be put on the Red team (Purple is our regular).  That was fine, I was just happy to be on Unit 2, our home away from home. 

I got all packed up and ready to go when the phone rang again.  It was admitting to call to tell me that they'd had an urgent admission and that B no longer had a bed...what?!  Here I have a kid with a very swollen (and getting more so by the hour) stomach, unable to eat and 'leaking' fluid...right.  She told me she'd call me back in 1/2 hr since they were going to have a "big meeting" in order to sort through the bed needs.

I got the call back an hour later and she told me that we'd now be headed up to Unit 4 AND they could take us at 5pm.  I was done, I said that I'd just take him into Emerge and he could sit in a bed there then until they were ready for us because he was in far too much pain to sit at home and wait.  She asked me if I could at least wait until 3 and since it was already after 2 I didn't see a problem with that.  I hung up and promptly burst into tears of both frustration and stress.

Off we trouped to ACH to admit him and found out that we're not even on Red Team (that know him a little) but on Gold that don't know him at all.  More stress.

Our Nurse was super busy when we got here so we didn't even get assessed until an hour later.  I explained what was going on and explained the pain and the leaking.  I pulled back his gauze to show her and just about threw up.  B's 'wound' spurt air and fluid up in the air...his stomach, NOT his g-tube.  B has a hole right through his stomach.  No wonder it hurts and no wonder it was leaky so much.  I felt so very ill and so very horrible that it was leaking out of the hole the whole time...awful and so so so not right.

Then we waited, and waited, and waited.  No food, no pain medication and no answers.  We finally got to see a Resident and he told me surgery had been paged to come as well.  He examined him and had thankfully seen him the week prior when we were in for this last time so knew him a bit.  B was getting more and more agitated and I could barely put him down for more then a minute.

The Resident came back in with the Surgical Resident and they examined B.  More pain, more stress.  The 'thought' is that it is a fistula.  What's a fistula?  A hole...big description right?  What caused it?  Don't know.  Surgery didn't feel an urgent need to do anything then and there (since it was after 7pm on a Friday night) and the decision will be made in the morning to what the next step will be.

In the meantime B was ordered an IV and some better pain management and then we waited, and waited and waited.  While we waited he got more and more agitated.  I couldn't hold him (he was flailing) and I couldn't put him down (he was screaming).  An hour later I finally hit the Nurse's call bell with tears streaming down my face begging for at least a Tylenol suppository.  I asked for the Resident to come in and explained to him through my tears that this was not my kid and that something needed to be done now.

The Transport team came up to do his IV (I requested them since they do complex kids more often) and one poke, two pokes, three pokes a charm and NO IV.  I asked for the NICU a few more times and got told they would find someone. 

Mike and the boys showed up and I had to send them right back out the door since the ER team showed up to poke B again right after.  I felt so badly for them since they just wanted to see us and spend a moment with us but there was no way in hell I'd let them see what B has to go through to get an IV.  ER sent up two senior Nurses and they went to work.  One poke, two pokes and success...but barely.  B has an IV at least but it is very precarious and it has had to be fiddled with several times already since it keeps occluding (getting blocked off). 

We also had xray show up at the same time and an xray was done of his abdomen.  Two for one torture night!

The Pediatrician came in and introduced himself and I reminded him that we'd met before but the last time he'd had B we were sent down to ICU shortly after they'd met and spent 10 days downstairs on a ventilator.  He did remember B then.  Anyhow he explained that there was a very concerning area of gas on B's xray and that they needed Radiology to view the xrays immediately.  They couldn't tell if the gas was in the intestines or in the abdomen (very bad).  If it was in the abdomen then it would mean immediate surgery...no stress.  They did come back a short while later and say that the Radiologist was sure it was in the intestinal walls BUT that it was still an issue with the size of the pocket of gas.  What it appears to be is yet another Ileus (where part of the intestine stops working).  The good thing is that to treat an Ileus and get the gut working again you go off food (already done).

So this is where we are at, a hold through his stomach wall to the outside and an Ileus.  Not too much to worry about (why is there no 'sarcastic' font??).

We will see surgery in the morning and more decisions will be made from there about how/when they will 'fix' the fistula.

The 'good' news is that Unit 4 and Gold don't want B anymore and as soon as they can shoot him down to Unit 2 and back to his Purple Team we'll go!  Ha!

It's been an incredibly long and stressful day and like I said an hour ago, I'm happy to see the end of it.

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

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...