Entero Rhinovirus Fun at ACH

Meanwhile back on the range...B's been in hospital since Tuesday.  Could it be the explanation for the 'crabby baby' last week?  Highly probable.

Yeah, this is one sick baby

I had to bring B into Emerge on Monday because he was retching up a storm and not tolerating his food well (sounds familiar).  The thought from the ER Doc was that it was a stomach flu so we got sent home with two more doses of an anti-nausea drug and the hope it would blow over.  Was I hopeful?  Sure was but was also saying as I left Emerge, "great, see ya tomorrow!".  I do have to say though, in and out of Emerge in 4 hours?  Groundbreaking!

Teething and sick?  Gee, lovely!

Of course B plans this for the day when my Mom and Sister were set to leave to go home!  He had a horrible night Monday night and I knew Tuesday morning he had to be admitted because he couldn't even tolerate the Pedialyte that we'd been sent home on.  My Sis and Mom put off leaving for a few hours so that I could take him back in and not have to take the 'big boys' with me. 

Back in we went and got the same Dr as the day before so it was known pretty quick that B'd have to be admitted.  It was a decent Emerge visit though, great Nurse two days in a row and only ONE poke to get the IV in (of course this is after I told the Dr that I would give them two shots before I wanted the NICU or Transport called).  The not-so-good-news was that Purple Team (B's chronic kid team) was full so we had to be put on the Red Team but our Dr.V's on Red for this rotation and we're on Unit 2 so life is good.

Mr.B's just been blah, lethargic and well, blah.  He's had a few moments of 'happy' B but they are few and far between still.  He's content to lay still on the floor or in the crib (unheard of) so I know he's not feeling well at all. 



Too tired to go over Momma's leg

We finally got an answer today though, he's got Entero Rhino Virus (kind of a cold/flu in one).  He's not at all stuffed up though and his cough is gone, it's all GI (again, big surprise).  We did manage to get him back on Pedialyte today and it's been running since this morning and he's tolerating it.  He did get a saline cap on his IV tonight (still in but 'off') so that's another big step.  It's a beautiful IV too so we certainly don't want to pull it too soon knowing B.

Aiding and abetting with Nurse Nora

He did have a reassuring burst of energy tonight (just a bit ago) which was funny to watch.  I left Nurse Nora holding him so I could run down and grab some soup and when I got back there was a drumming party in his room with Nurse Breanna and Nora.  B was so happy to see Nurse Bree that he decided to make his way out the door to catch her when she went across the hallway to see another patient.  It was pretty darn funny to watch and very nice to have a good laugh!  I wish I'd been fast enough to catch it on film but then again, I don't know if I should have proof of him crawling across the floor here (I did sanitize him really well after)!

I keep hoping we're rounding the corner so I will have the same hope again tonight as he goes to sleep.  I've been going home and (not) sleeping there and B gets good and mad at me when I return.  This whole 'balanced' life stuff is for the birds!

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

Healing Heart

This boy amazes me, simply astounds me...Mr.B figured out a new trick today...

I had no words, I was literally speechless to see him get up there and not only that but he did it several more times over an hour.  I knew that his arms and shoulders were gaining strength from all of his 'crawling' but to have the strength to fully lift his bum off the ground?  No idea!  The picture is blurry but you can see that he's on the inside of his feet!  I honestly couldn't tell you what is next for this kid!  Could it seriously be possible that he could walk by 2???  I would have been happy if we could have gotten him this strong (not that he isn't the one doing all the work) by age 4 or 5...AMAZING!

It's actually been an amazing couple of days...

Friday we got to go to the first "Sibling SuperHero Day" at ACH.  The Pediatric Residents put on a lunch for all the siblings of the chronically ill patients, how awesome is that?  We got a lovely flier and invitation in the mail a few weeks ago and I knew that we certainly had to attend.  I thought it would be a wonderful opportunity for the kids to have a good 'pat on the back' of course but they went over and above what I expected.  (The only crappy thing?  I forgot my camera and had to take the pictures with my phone.) 

SuperHero Rylan

 

SuperHero Torin

 

My three SuperHeros!  Thank you ACH Pediatric Residents!

We walked in, signed in and the boys were gifted their 'cape' that they later could decorate however they chose.  They had a huge pizza lunch for the kids and they got stuff their little faces with pizza and salad while listening to a few guest speakers (which I missed since B threw a fit, more on that in a bit).  They got to colour, play AND build their own sundaes and eat cupcakes!  I would say they were pretty darn happy!  We got to see some familiar faces too which was very nice!

It was a great day for the boys but a looong day for me.  Mr.B threw two fits, two days in a row that were seemingly out of nowhere (for me).  I do understand the second one (the day at ACH for the party) since he would have been stressed about being at ACH (we were there 4 out of 5 days last week), but the day before we'd been at home, just he and I.  I can't stress enough what a 'happy' kid Mr.B is, he really has a happy disposition and when he's unhappy there (generally) a really good reason why.  The first 'fit' I could not get him to calm down, could not.  I knew he wasn't in pain (not a pain cry) and I knew he was frustrated.  I sang, rocked him, played with him, nothing worked.  Of course I was trying to get out of the house at the time to get to ACH for an appointment so I was trying my darndest.  I finally (at a complete loss) took him outside and he calmed down enough that I felt comfortable putting him in his car seat while I grabbed my purse.  I was so frazzled at this 'new' B that I immediately burst into tears once in the van and B?  He started to laugh and play, happy as can be to be 'on our way'.  Quite the funny picture I'm sure, me crying and B laughing.

Needless to say when it happened again the next day (at the party for the boys) I was feeling more than a little overwhelmed.  Not because of the 'fit' per se but because it was painfully reminiscent of T's early 'fits' (early Autism).  I was overwhelmed that we could be looking at the possibility of Autism on top of everything else.  I know Autism, I can do Autism, and now that I'm not in the emotion of the moment, I know I can do it with B too (if it comes to that).  And yes, I know, he's almost 2 and he's entitled to a 'bad' day or two.  In the moment though?  I pretty much felt lost and overwhelmed.  Interestingly enough you're probably wondering how I calmed him down the second day?  I pressed his hands against the window (we were on the 4th floor) and looked outside with him.  It is nature that calms him, nature that soothes him.

When we got home from ACH that day I was still feeling overwhelmed and B has this latest thing that whenever he's put down on the change table he screams and cries.  I was obviously at my end because I again just started to cry, so frustrated and so upset with myself for even experiencing frustration with him.  Poor Mike came home in the midst of this and bless his huge heart he jumped in and took over without asking anything (my good man knows enough to know when I'm done).  I then took my sore and sad heart to my room, undressed and slid into bed to cry my tired heart out.  I knew I was tired (big surprise) and I knew I was just done, breaking point past, done.  Stressed looking for a new Aide for B, stressed about having to re-negotiate (again) with FSCD and super-stressed about knowing that my Mom (and all of her incredible help) was leaving in a few days.  I then slept.  I wish I could say like a baby but at least I slept for a few consecutive hours. 

When I woke up I'd like to say that 'all was well' but in reality I just lay there and thought about life.  Thought about how tired I am and how worn out I am, generally feeling sorry for myself.  I was listening to the sounds of the house and heard Torin asking Auntie Mobee a question (my sister from Chilliwack, BC).  At first I assumed he was chatting with her on the phone and then I realized that no, he was talking to her in person.  When I got up I walked out into B's room to find one of my big sisters right there in my home after driving for 11 hours all day by herself to be there...my own Sibling SuperHero.  I had no idea she was coming, although I'd been 'teasing' her with the idea for over a week once she got home from Australia.  To say it was the perfect end to a crappy day is putting it lightly.  She just so happened to show up right at the time when I needed a boost and I'm so thankful for that.

The boys were also beyond thrilled (and did forgive her for coming without my nephew) and I think that my Mom was happy for the extra pair of hands (Mr.B too).  The lucky girl got to go shopping with me all day yesterday to pick up what we needed for Rylan's Birthday party today!

B's new favourite toy from our new friends Susie and Bob!

Rylan, bless his little heart, had a long wait for his birthday party this year.  Rylie turned 6 on Aug.6th but since B went into surgery the 7th we booked Ry's party far enough away so we had an 'in case of emergency' with B.  Today we had a wonderful day!  It would have been nice for some sun and a bit more warmth but hey, it was still great.  We rented our local outdoor pool and instead of just Ry's friends we invited siblings and parents too.  We had a great turnout and even more important the kids all had a blast.

A blurry shot but I just love this expression!  Such great toys we have!

My 7 year old is growing rapidly and I suggested something new to him this year, instead of presents how about a twoonie (two dollar coin in Canada)?  After I explained the concept, a twoonie for Rylie and a twoonie for Alberta Children's Hospital (as a donation) he was completely on board.  I am so darn proud of this kid!!  Now of course he still got some presents (lucky kid!) but he also collected $67 dollars as a donation to ACH.  I explained that we'll go later in the week so that he can give his donation to the hospital and his response was "Why not tomorrow Mom?".  I'm not 100% certain he really gets how awesome it is but I think he's kind of got it.  What a kid!

Forgot to B-proof here Momma!

 

Mom's trying to cook dinner so she gave me a can of tuna...Awesome!
(and he played 'hockey' with it throughout the whole house!)

 

New boomerangs all the way from Australia from Auntie Mobee

Tomorrow we are off to Hearing at ACH bright and early and onto our last day with both my Sister and my Mom (she's driving home with my Sister as a co-pilot).  I'm not too sure what shape I'll be in come Tuesday morning when I need to say good-bye to both of them but for now I'll just concentrate on getting her to forgive me for keeping her up while I post this!

Auntie Mobee Pattycake

I LOVE this 'James Bond' face..."I got ya Mobee!"

From Our (Full of Extra Love) Home To Yours...

The Face Of Our Angel

The face of our Angel

Today was a serious day...it was HAIRCUT day!  This is actually B's second haircut but his first one was a little smaller than this one.  Needless to say Mr.B was NOT impressed with his Momma's decision to cut his hair, actually shave his head. 

little ham

It was time for the back-to-school haircuts and B's had this 'bald' spot at the front of his head where the PICU team shaved it in June to put a line in (although it never got put there after all).  It just made some sense (before I knew about the 'torture' it would cause him) to have it all the same length again and start over.

One of life's tortures, it was horrible
but we all survived

Needless to say I knew he'd fuss through it but I wasn't prepared for him to completely freak out to the point that he almost ended up with a mullet!  I had no intention to torment my poor baby but we were that far into it, we just had to power through it.  As you can see from the pictures he was NOT happy with me and he took 10 mins just to calm down afterwards.  Thankfully we were with out Hairstylist, Melissa who's been cutting the boy's hair since T was 18mths so she knows us well and I don't think she was too fazed by it.  However it might be a bit (like 5 years) before we attempt that again.

Tears shed by all but we survived..

B is now spending more and more time upright and spends time sorting (and by that I mean throwing) his toys in his bins.  I love watching him problem solve through things, it is so very awesome to see.  See the amazing video HERE (not too sure how/why it is sideways though!)

My Mom is still here and I can't remember what life is like without help again...I don't want to think about life after she leaves again.  It is SO nice to have someone that I can just hand B over to so I can do something!

We are doing another Oxsymmetry test overnight tonight (if B ever falls asleep) and this might just be our last one (for now), fingers crossed.  We've been oxygen-free for two full months now (aside from the surgery hiccup) and I can't even tell you how freeing it is!  I still have friends tell me that they get concerned when they see him without it though! 

I still have to get a video of his 'river dance' and he's now answering me when I ask him "what does a cat say?" (might not sound like a typical 'meow' to you but he's still responding!).  Our boy is growing like a weed and getting so much stronger as each day passes and we have so very much to be thankful for!


From Our Home To Yours...
 

Insomnia Again? Really?

Glow sticks are fun outside in the dark!

Onto another insomnia night...I hope this isn't a trend!  Braeden had a horrible night last night, one of his awake every 20 min nights and I'm so far past tired.  It's frustrating because I could fall asleep on a dime at any point generally in my day but when nighttime hits it's anyone's guess.  It's hard going to sleep at night knowing that I'll be wakened either by B or by his food pump generally within two hours so I never get into a 'good' sleep during that time.  I cleaned out the pump bag this morning at 1:30 and was SO stoked that the possibility of a 5 hour sleep lay ahead (if B cooperated, ha) and I was happy to return to bed to....lay awake for TWO hours.  It's now 3:30am and B's very unsettled and now I really can't sleep.

Enough about me!

Mr.B's pulling up more and more and it's getting to the point

What cha' doin' Ry-Ry??

of having eyes on him non-stop or things immediately hit the floor.  He decided to clear out one of my shelves in the kitchen for me today of my glass bowls (unfortunately couldn't find the camera in time) and he had a blast playing with a full two litre bottle of tonic water.  It is always a race to see if he gets to the cat's water first or if we can get it out of reach as he loves to water the entire kitchen floor.  My sister was laughing today (with me? at me?) on the phone saying "Remember this stage?" and my response was "No, it's been 6 years!!!".  It's been a long time since there was a toddler loose in my house (that was my own) and it's pretty darn special having one now!

Syringe fun at the park

I love that B goes 'exploring' trying to locate his brothers.  Since he is in constant want of his Momma (me) I find myself dodging rooms so that it takes him an extra bit to find me.  It's really quite hilarious.  Everywhere you turn now he's under foot and it's so great to see.

Just gonna text Daddy

We are still having so many feeding issues that B has to be strapped into a seat for a feed and gets really quite annoyed at the limited mobility it offers.  He gets to sort through a huge array of toys while 'stuck' eating and it's often a game of who can give B a toy that he won't immediately throw off to the side.  This kid knows what he wants when he wants it with no doubt!

some rare Momma photos

Momma lovin

Mike hung up a swing for him in the backyard today that he just loves.  I am hoping I can rig it up to fit him better as it was certainly not made for a kid with low tone but he seemingly loved it nonetheless (again, with the missing camera).  Outdoors is where he wants to be so I'm hoping with the addition of the swing we might even be able to incorporate a feed outside each day while the weather stays warm enough.

Big Brother Love, T loves B SO much that he'll even let B
play with one of his phones!

I'm in a bit of a panic mode these days as well because the countdown is on until my Mother goes home to Victoria and I have all of these 'projects' that I wanted to complete.  Some things never change around here, I've always got projects on the go and no time to do them (not to mention the lack of sleep doesn't help).

We are also feeling the push of back-to-school now (only two weeks to go) and I'm not looking forward to it this year.  What?  I know!  I've really enjoyed having all three boys home for the summer, it's been really great just having this time together.  The big boys are certainly getting excited about their pending return though (and escape from their Mom!).

Big Brother Snuggles

We've got a busy week at ACH ahead for appointments starting with a Seating Clinic to fit Mr.B for his new wheelchair/stroller.  I still haven't seen it and still don't have the funding in place to cover it (it's going to be at least $5000, yup $5000) since the government doesn't pay for this style of seating but I'm excited nonetheless to see it in person and to see him in it.

I am also still working towards getting a full-time position for B through FSCD and we are going to the next level for negotiations but I am willing to put the effort in since it will make all of our lives exponentially easier. 

I suppose there might be a few reasons for my insomnia after all...

Good morning and now good night (if Mr.B cooperates which he doesn't seem to be agreeable to at the moment since he's awake enough to play with his mobile...hello 4am).

From Our (TIRED of Being Tired) House To Yours...

Things Adults Should Learn From Kids

I am so far past tired that I can't sleep, how much does that suck?  It also doesn't help that it is stinkin' hot, B's unsettled and crying out and my darling husband is a-snorin' away next to me (shh, don't tell him I said that!).  I managed to get a wee sunburn at the Splash Park today on the back of my neck to just round things off in the wanna-sleep-so-bad-I-could-cry category of this evening.  Oh, AND we're losing our Aide Heidi to bigger and better things (yay for her, boo for us), and apparently the need to hire someone new (again) is a stressing me out a wee bit.

So what does one do when one can't sleep (aside from singing Fire and Rain by James Taylor over and over in one's head)?  Write a post of course!

Mr.B's been up to some new tricks in the past few days and I just have to share (brag about) them with you!  He has discovered (quite cleverly) that he is now able to pull up on, well, everything!  He just vaulted himself into toddler-hood when I wasn't looking!  His newest nickname (to add to the growing collection) is Mr.Trashy-pants as he pulls up onto whatever and proceeds to clear it off in one or two fail swoops!

Lemme just help you with your recycling mess Momma!

Oooh, new toys!

I'm not doing anything...

Forget toys, I've got a broken toy bucket instead!

Hi Momma!

I love that this kid has no patience for some things, when he wants an area clear or no longer wants a toy, it physically has to be out of his sight or he'll just keep persevering until it is gonzo (yes, I'm tired I said gonzo).  Of course you might see the issues that we are now encountering because of this...like, my entire stack of paper recycling, the boys toys (that they thought were safe on the couch, etc.  Nothing is safe!

Of course what I can also say is that it thrills me to no end, he's being a 'typical' toddler, attitude at times and all!

Another of Mr.B's latest thing is that he completely loses it when I put him down to change his bum, loses it.  Screaming, crying, breath holding (turning blue) and back arching...hmmm, this one might not be as 'cute'.  The crazy thing though?  If I distract him with something, usually a syringe, he's FINE.  I'll be happy when this little 'stage' passes!  **Please note whenever I talk about syringes in my posts these are for putting meds/water into his g-tube, there are no needles involved, ever.  I swear I'm generally a bit more of an attentive Mother then that!**

Just checking stuff out...

Hey, a new drum!

His new 'funny' thing he likes to do?  Smack and scratch Mommy's (that's me) face when she's holding him, again, this one can end soon.  I NEVER thought that I'd be setting boundaries for this child!  It's kinda cool (in a getting-my-face-slapped/scratched kind of way).  Each time he hits he gets told 'no' firmly and if he hits again (which he always does of course, he's a toddler) he gets put down.  Of course the giggles (his) are immediately replaced by gut wrenching tears (again, his).  I never thought I would ever have a time or day when I made him cry, it's horrible but also just so darn 'normal' at the same time.  Of course he gets picked up again after a short while (while everyone around feels so sad for him) and then we start over again.

It is pretty darn cool to just have some 'normal' (?) times in our lives!

On the 'medical' side of things, his new g-tube is working well but it very sore.  I don't know why but he's making a ton of granulation tissue again like he did the first time he got a tube put in.  I'm not sure why he's got the increased friction against his skin again but it is painful and bleeding a bit which makes tending to it that much harder.  I've got the great job of silver nitrating it tomorrow (yay, ugh) but I've put it off because I've been bathing him everyday to keep it clean(er) and he can't bathe for 24 hrs after a treatment.  There's not too much worse then burning your kid's exposed granulation tissue with silver nitrate, not too much.

However, the tube itself does vent beautifully and we are getting used to having a 'tube' again instead of a skin-level device (removable tube that leaves a 'button' in his skin).  We are certainly having to be vigilant with the valves (closures) on the tube however because we have had several leaks now (where you lose a whole feed because the top opens up and drains).  It looks like we'll be using some of that lovely 'pink' tape to keep him closed again as well as trying to devise a 'belt' of sorts to keep it close to him when he's not feeding.

I did get a message from his Pediatrician that the OR results from the GI are that the conclusion is that the balloon of his last device was most likely blocking off the stomach when the stomach was empty.  No big surprise for us there, I can't tell you how many times I dislodged it from his pylorus (valve at the bottom of the stomach).  Still no other news to date or no call in regards to the edema in the stomach lining.

The other lovely and exciting thing Mr.B is doing is cutting SIX teeth right now, all at once.  S-I-X.  Ouch.  Can you imagine the drool??

Working those legs!

We are off to our therapy team appointments tomorrow with his Physical Therapist, Speech Therapist and Dietician (his OT has gone on Mat leave and hasn't been replaced yet) so we'll get to see what his weight is looking at now.  I'm am really hoping that he's at least getting back to where he was in the beginning of June.  We also get to show off and show his PT just how much progress he's now making in terms of movement and such.  I can't wait to show his therapy team the videos of him on the beach!



ooooh, funny faces

In all other aspects B is doing well, he's back to his usual antics of making all of us laugh uproariously and keeping me on my feet (and shutting baby gates)!

I just wanted to share with you today too how much I love the minds and emotions of children (not just my own for a change).  We, as adults, should stop and just sometimes realize that children might just deal with life better then us in some regards.  

Why frown when you can smile and light up the world around you?

We were at a local Splash Park today with a group of good friends and their kids and I had B on a blanket to change him.  He'd soaked himself with drool (did I mention teething?) so I had him in only a diaper and the kids had gathered around (they all adore him).  I LOVE the questions that kids ask about B, they are so direct!  I love that they ask about his feeding tube and his scars.  I love that they don't hesitate to ask me about anything that they see as 'different' and wait patiently while I try to explain it.  Adults need to take a page from kids sometimes when it comes to spotting differences.  Yes, sometimes kids can be embarrassing when the ask (generally LOUD) questions in public about someone 'different' but it is their honesty and openness that I love.  We lose that as adults because we try often for discretion which generally comes across as inadvertent staring.  I urge all of you to be open with your kids about other children (and all ages) with Disabilities. 

Kids are open, honest and genuinely interested in how the world works.  NOW is the time to teach them that we're all not the same, NOW is the time to teach them tolerance of others and NOW is the time to instill empathy and kindness towards others.  I honestly don't think that there is an age too young, as soon as they start asking those hard questions I believe that as their parents we need to start answering them. Honestly, or at least as honestly as we can.  Instead of hushing our kids to avoid those 'embarrassing' questions, embrace them.  From my experience, someone with differences appreciates being asked about them (kindly) as opposed to being stared at or (sometimes worse) ignored.  Encourage them to ask questions!  Take the time to point out our differences and point out our diversities, the world might just be a kinder place with their generation! 

My friends have some pretty awesome kids and I'd like to think that they are going to be even a little bit awesomer (it's a word at 2am) because of knowing and understanding an amazing kid like our Mr.B.  (Getting off soap box now to let you all raise your own kidlets!)

From Our (Sleep Deprived) Home To Yours...

Recovery Time

If you've not been following us on our Facebook Page (click here) for (more) regular updates and VIDEOs!  Please hit the 'Like' button on Mr.B's page so that you will receive the updates and new videos.

I'm also putting out the request for any knitters or crocheters that might be looking for a project.  Mr.B is a blankie baby (as were my other two boys) and he requires two knit/crocheted blankets for comfort to go to sleep. We do have six different blankets that we shift through but they are all very important to us (gifts from Ronald McDonald House, ACH and such) and they are getting a little threadbare. If anyone knits and/or crochets (and has time in their busy lives) we would love to add to our collection for him so that I can 'retire' some of the first ones we received. Please let me know if you are interested, message me and we can discuss the cost! :)

Surgery day was more than a little anxiety ridden but it was all mine (and a few of yours) not B's.  We arrived at the Day Surgery Clinic and Mr.B was instantly unimpressed!  He was even more upset with me when I changed him into his little pink stripy jammies and hospital gown.

We had an hour or so to wait and B just pretty much clung to me that whole time while I ran through my repertoire of songs for him.



We were then walked down to the 'holding' area where you wait (again).  We did get to see all three of B's Doctors and that helped to drop my anxiety level (Dr.Brindle could put anyone at ease) and meet with his Anesthetist.  The Anesthetist was new to us so he was reviewing B's files for his last surgeries to see what his 'rating' was for intubation.  Needless to say, B's 'file' is over three feet high so it was a bit of a shuffle.  The Anesthetist also noted that B was down for Day Surgery and he looked at me and said, "Day Surgery?" and I responded with, "Yeah, I'm a bit concerned about that" to which he responded with, "Yeah, me too!".  The decision was instantly made to hold B overnight for observation, which made my anxiety much happier!

The Anesthetist was also happy to learn that Mr.B was a 'grade 2' intubation last surgery so that helped as well.

 

I had been thinking of his surgery for days (weeks) before and I was bound and determined that I would be the one to walk my child into surgery.  I was fully ready to put up a fight if needed!  His Nurse came and was chatting with us and she reached out to B and he WENT to her (he's not let me go for weeks without major incidence!).  She said, "Say bye-bye Mom" and I said that I wanted to walk him in and she reassured me that he was okay (which he actually was) and I realized that I had anticipated a huge wailing/screaming baby going in, not a happy calm B.  I watched her walk away with B down the hall and he just watched me as they went, with no tears.  Now I'm sure he totally freaked out when they got him into the room but I'm going to let that just go with the imagination that they got the gas mask on him immediately and he was out.

 

There are no words to describe or feelings to put down as you watch your child being walked into surgery, Day Surgery or Major or somewhere in between.  I actually felt somewhat at ease, which I also was not expecting, when I walked back to the waiting room to meet Michael.

 

Thankfully I was distracted by Kathy one of the g-tube Nurses who went through the new g-tube protocol with me (not that much has changed) and in all reality it was only an hour long surgery so it was a doable wait.

 

Dr.B was out first and she was so excited!  She had taken a good look in his tummy and said that she was confident that the new tube would be the ONE!  His stomach size is still very small and the balloon part of the Mic-Key (holds it inside the stomach) was taking up a good deal of room and was certainly right beside his pylorus (valve at the bottom of the stomach that it would get jammed in).  The new PEG only has an upside-down cup, no balloon and Dr.B is thinking that this will certainly be part of our never-ending g-tube battles. You just have to smile at Dr.B, she is contagious in her enthusiasm and she would never say something was great unless it really was (we love her!!).



MicKey (old style, balloon goes in tummy)

 


New PEG (mushroom cap goes inside)



 

I was then called into recovery (which is an immediate indication that he wasn't doing so well coming out of his 'sleep' as they don't generally want parents there).  Michael headed back to work (only one parent allowed) and I went in to find a very blue Mr.B.  He was extremely unimpressed to say the least and when he's unimpressed he holds his breath.  Now it's not like he was untended to, he had a great Nurse but he needed his Momma without a doubt.  I was able to hold him, get the oxygen mask on his face and get his SAT's up to a decent level.  The Nurse asked about his history and I explained to her it really hadn't been that long since he'd come off his O2.  She seemed surprised and immediately ordered nasal prongs for him and called the Respiratory Resident to put him on constant O2 flow.

 

Mr.B was feeling more than a little rough and having him

mad and holding his breath was certainly not helping anything or anyone!  He was not impressed at the addition of the nasal prongs but he kept them on which is a good indication that he needed them.  He was actually able to settle on 1 litre of O2 and slept in my arms for a bit.

We got assigned a bed up on Unit 4 and got moved upstairs (I honestly had no concept of time at this point).  Braeden was again suitably unimpressed to be wheeled into a room.  We met our Nurse Tim (who was great) but I was feeling more than a little anxious at being on Unit 4.  It is silly really but I know so many faces on Unit 2, it is our home away from home, so it was hard having to 'adjust' to the Unit 4 living. 

The rest of the afternoon/evening is just a blur of B being very upset for the most part and needing to be held non-stop.  I tried to dash to the bathroom and Mr.B's SAT's hit a lovely 53 (that'd be blue baby).  One of B's (original) Nurses, Sarah, from Unit 2 was on shift below us and she came up on her dinner break so that I could have a 5 min reprieve.  She was more than willing to take a screaming B from me and tell me to 'go'!

Nurse Sarah and her Mr.B

I guiltily ran down to grab a salad and a coffee and all but wolfed them down when I got back so I could take him again.

Sarah then, bless her HUGE heart came back after her shift was over at 11pm to sit with him so that I could run home for a toothbrush, shower and such.  He was asleep at this point but was waking every 10 mins or so and needed to be constantly reassured.  I crept out and (again) dashed home feeling horribly guilty but also knowing that he was with a familiar face and would be well tended to.  When I got back he was actually blissfully settled in her lap in the dark watching "Dr.Seuss".  It was a funny/great sight to see!  Of course he immediately started crying when he saw me but it was good to know that he had a very good snuggle with Sarah while I was gone.

It was a long night (I don't know what a short night is anymore) but we got through it (mostly) unscathed.  I was woken up by the Surgery Resident at 6:30am (uh, thanks) who asked me how the night had gone etc. and if I was comfortable taking him home (YES).  He was happy to release him later that morning which was great news.  B had been off his O2 all night and had been doing just fine without it (my superstar kid!) so I was more then happy to take him home.

Of course when they tell you that you're released it is still

another few hours (or 6 in our case) before you actually get to leave.  We headed home in the pouring rain and I came home and put B immediate to bed in his own crib so he (and I) could relax.

As expected, B has bounced back with vigour aside from a really sore left ear (that bleed out quite a bit initially).  He's back to his happy/silly self today (three days later) and back to fully enjoying life (as long as I'm not putting in his ear drops). 

Thank you everyone for your kind words and positive thoughts!

From Our Home (hopefully for a long while now) To Yours...