Oh The Joys of Momma's Guilt

I just wanted to share with you that we were in hospital

B helping Ry play Skylanders!  B was laughing uproariously
because Rylan kept telling him to hit the 'shoot' button, not
the 'run' button!

yesterday for an appointment and I ran into one of B's first Respirologists that cared for him.  I let him know that B's been off his home oxygen since mid June (aside from the small surgery set back) and that we're being transferred out of Respiratory (for kids on oxygen supports) and into Pulmonary (for his chronic lung disease).  Dr.Anselmo was gobsmacked!  He told me that never in a million years would he have believed that.  This (B) was a kid that he (Dr.A) was fully ready to trach and have jaw surgery done to help his airway and now he's off oxygen before his 2nd birthday!  That made me feel good!  Our Superstar!

On the other hand:

Feeling a bit like the 'worst Mom in the world' (again) these past 24 hours...

We came into ACH last night after getting news in the afternoon that there was a bed for B.  Needless to say, Mr.B was NOT terribly thrilled about the idea when we got into his room.  I just wish there was some way to explain to him what is all going on.  He's had so much trauma happen to his little body that he instantly believes that 'this is gonna hurt'.  It sucks!

I made his crib bed up all nice and cozy and tried to get him to settle in for the night.  I knew he was exhausted, (as was I) but he just wanted to stay up the stinker.  I had an early morning (today) and since I'm already chronically sleep deprived when B's home (and when he's in hospital...okay, all the time), I knew that I needed to get some sleep so that I could stay awake through my 7 hour meeting today.  I tried to creep out and what do you know, my heart broke right in two has he started to cry.

An aside if you will:
Now, for those of you that haven't 'experienced' hospital life on an ongoing basis might be thinking how horrible it is that I would just leave him here.  It is never an easy decision, and I ALWAYS feel horribly guilty.  Please also keep in mind I have two other boys that need me and this isn't a 'one time thing'.  B's in here a great deal and I have struggled and written repeatedly about my need to find balance in my life.  I know that you might be thinking, "if my child were in hospital I would never leave their side"...which is probably true but the difference with chronic care kids is that when the stays can last for months on end at some point you need to try to live a 'life' as well as care for you child.  I am also very comfortable with his care here on Unit 2.  Most of the Nurses know him (or at least know about him) and he is always well loved and cared for.  Although it is horrifically difficult to leave him here at night most nights (after he's gone to sleep) it is actually healthier for all of us in the end (even though I can't sleep without hearing him at home either).  T and Ry need me as much as B and they get the 'hospital' stuff but it is increasingly difficult for them when Momma's grumpy, tired, stressed, fill in many other blanks here.

I had a friend say to me, "B's going into hospital for 2 weeks??" and my response was "yeah, 2 weeks isn't that great!".  While she felt badly for me that our stay was going to be a long 2 weeks I was happily rejoicing that it is ONLY a 2 week stay (celebrate the small things).

I digress...

The whole hospital room is a party and playground

So I left, B cried and I left, tears in my eyes and rolling down my cheeks by the time I made it to the car....it never gets easier and finding balance sucks.

The other part of the 'worst Momma...yadda yadda" is that I had a meeting all day today and then the hubby had a Dr. appointment so I didn't get up here till 8:30 tonight.  Did I mention the Momma-guilt doesn't ever lessen?  Justine (B's aide and entertainment) was here with B all day as were a slew of visitors (word goes out B's on the Unit and the Nurses come for some B love).  It's not as if he was alone, and it's certainly not as if he was in a bad mood...just the opposite in fact.  He had a great day and was all smiles and laughs before I got here tonight.

We did have a good play and snuggle tonight and once again he didn't want to go to sleep.  He's finally now gone down and I'm hoping (and telling myself) as I sneak out the door that he's going to have a good night.

Mr.B 'playing' the drum today with Justine...little drummer boy?

 

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

Blankie Stories IV Harrison Family

Just a note to say...

Dear Braeden "Mr.B",

Hope this blankie will bring you lots of snuggles.  It is sent with piles of love, hugs and kisses from all of your cousins, Auntie and Uncle up here in Northern BC.  We are all looking forward to the day we get to meet you.

Love Auntie Terry, Uncle Cliff and all your cousins

This was a surprise in the mail tonight!  I love surprises (like this, not the gonna scare you so bad you pee your pants kind)!

This blankie came from Vanderhoof (Northern, BC) from my Aunt, Uncle and Cousins (B's Great-Aunt/Uncle, 2nd and 3rd Cousins).


My wonderful Aunt has sent me surprises on more then one

occasion throughout B's arrival and crazy ride.  It is hard when you have family that you don't really get to see very often, when you live apart.  Thank goodness for the wonders of modern technology to make this world a smaller place!

Thank you so very much and much love to all of you (Terry, Cliff, Carlina, Danelle, Mayson, Tyreed, Jaxson, Charity, Breeyelle, Madison and Abby)!  We miss you all and hope that one day soon we'll be up in your neck of the woods!

Love, Mr.B

From Our Home (Unit 2) To Yours...
 

A World Where Children Die

We had a pretty typical week this week until we hit Wednesday and Mr.B decided to shake things up a bit. 

Wednesday morning I actually introduced B to his first dose of coconut oil (2mls) to see if we could have better luck with an easier 'fat'.  I  flushed him afterwards with 30mls of water and felt confident that his tube was clear.  Justine was at another appointment and wasn't here with us so I packed all three boys up to drop the big boys off at school (I had already forgotten after a month with Justine how much work that is!).  

B and I got home and I got his morning feed ready for him and put him in his tumble form chair (therapy chair).  He instantly began to freak out, and I don't use the words 'freak out' lightly.  I tried to settle him down in the chair and he just continued to escalate.  I pulled him out of the chair and held him close, trying to off some comfort while being completely bewildered myself at this 'new' B.  He cried and cried in my arms and then started his 'crunching' in pain (he crunches down like trying to get into the fetal position from, what I believe is, stomach pains).  He just kept screaming and crying and looking at me as if to say, "why can't you stop this?".  I tried venting him (in order for B to 'burp' I need to open his g-tube and pull any air out) and got back almost all of the water I'd flushed him with (it had been in his stomach for an hour at this point).  I didn't think much of it at the time but kept in mind the coconut oil so I threw out whatever came out of his stomach to try to offer some relief. 

After this went on for 1/2 hour with him starting to calm and then full out screaming again, I started to completely lose it myself and considered calling 911 (Emergency line).  I kept telling him over and over that I would take him into the hospital but he needed to calm down first.  My thought to call 911 was because he wasn't getting much air as he was in such discomfort and I knew I couldn't put him in his carseat like that.

I called Michael (my poor husband) and promptly burst into tears when he answered (which is the phone call that any husband would love to have).  I explained what was happening and he encouraged me to take him in (to the hospital) while we both speculated on what the heck could be wrong. 

While I was talking to Michael, B had pretty much calmed down (aside from the gasping breaths) and put his thumb in his mouth.  I realized that he'd tired himself out so I asked him if he wanted to go to bed and he happily let me lay him down with his blankies.  I let him sleep since he'd obviously tired himself out and was not screaming anymore.  (For those of you that are concerned that I didn't take him in right away please note that I did my best to palpitate his tummy in his 'calm' moments and found nothing outwardly alarming).

Music Therapy with Justine

I was completely frazzled about what to do that when he woke up screaming in pain again only 1/2 hour later my stomach dropped.  He wasn't screaming quite as much as he had been the previous time and he seemed to want down so I laid him on the floor on his side and he actually started to play a bit.  He would play, scream, and then play again (repeat).

The screaming episodes got further apart so I didn't feel the urgency to take him in that I had earlier (and it is always so much fun to walk into Emerge while B is 'calm' and try to explain that he's really uncomfortable).  I also knew that Justine would be at the house soon and I had sent a message to Dr.Cassie to pick her brain.

Rain sticks

My instant thought was that he'd reacted to the coconut oil (since he didn't 'digest' the water in his tummy) but Justine reassured me that he'd been having bouts of pain the day before as well.  I'm still not convinced that the coconut oil didn't have something to do with it but I might be willing to try it again (later).

A visit from Sweet Araya (and her Momma and Grandma!)
 so the boys could love all over her!

What I have been wondering (and keep in mind I do NOT have a medical degree, only a Mr.B degree) is whether or not B could have an 'internal hernia'.  When I look at the symptoms and match them to another Blogger-Mom's (with her own complex care kid) they match.  It would explain the 'coming and going' of the pain and how sometimes when he's in pain at night he can settle down after a bit when he's been readjusted in his positioning (like changing sides).  The thing is that it isn't seen on an xray, only by CT.  Could it be that when his intestines are moving along if part of it gets 'stuck' (hernia) then his stomach would back up?  Just my thought (again no medical evidence to back this up).

I'm helping with the feed Momma!

I actually sent Dr.Cassie an email in regards to this (before the pain episode had even happened) and she had forwarded it to Dr.Volmerio to review.  She (Dr.Cassie) told me she'd look into it.  I know, what do I know?  Right?  What I DO know is that we are missing something.  I've said it once and I'll say it again, something is missing.  There is a puzzle piece roaming free out there with some important information on it.  Looking back through my blog 'notes' as well, it has been SIX months since all of this started, six months of B having bouts of 'pain' and having difficulty eating.  Six long months of him still not being able to handle the volumes of feed he was back in April of this year.  Six long months of no answers.

Originally, if you remember, it was thought to be a motility issue and he even went on new motility drugs (on top of the one he was already on).  But...and with B there is always a but...Dr.Wrobel (GI Dr) found nothing on the biopsies she did of his upper GI (in August).  As far as I understand that if it is a true motility issue something should have shown up.

There is also the Ileus (part of the intestine stops working) back in June (when B spent the month in hospital).  It wasn't a 'textbook' Ileus either, it was something on his abdo xray that appeared to possibly be an Ileus (and B wasn't able to hold any food down so it made sense).

Also keep in mind the blood clots that B's had come back through his g-tube, where the heck are those coming from?  Is it that his stomach is so upset that he's having small bleeds?  But again, his stomach looked 'great' (no ulcers)when Dr.Brindle checked it out in August during his last surgery.

Superman sleeps here

I just don't know anymore and I obviously came across that way to Dr.Cassie on Wednesday after this latest 'episode'.  Dr.Cassie contacted both Dr.Volmerio (his ACH Dr that knows him the best) and Dr.Brindle (Surgeon extraordinaire) and the three of them decided that B should go into hospital for a 2 week observation when he's 'healthy' to see if we can get to the bottom of all of this.

I am happy they care about him enough to warrant this but also scared because of the risks associated with B just being in the cesspool of the hospital.  It is flu and RSV season and I would hate for him to get a hospital cold when he's 'healthy'.  I think all three of these amazing women know that I'm not the kind of Mom to jump the gun to run tests on B or demand much.  I am also extremely grateful that they all believe in me and what I say!  We are so very blessed with the Dr's that have been given to us for B's care.

T playing peek-a-boo with B...best big brothers ever!

We waited Thursday for a phone call to come in but none came (and it's not urgent).  I speculated with Justine that chances are there wasn't a bed for him and/or it was going to be staff change over starting next week (when the Dr's change rotation).  I did get a call from Dr.V Friday morning explaining just that, no bed and new Dr on Monday.  The fantastic thing is that Dr.MacNeil (who was B's first ever Dr on Unit 2) is starting her rotation on Purple Team (B's chronic care team).  Dr.V really wanted to make sure there was room on Purple for him (since it's where he belongs) and that the hope is to put us on Unit 2 (our home away from home).  The hope is for a bed early this week so that we can take full advantage of Dr.MacNeil's rotation.

For now we wait.  Mr.B's had a decent weekend at least and has been able to cope with all of his feeds so that is always reassuring.

Why sleep in the whole crib when you can squish up at the top?

It has also been a blow to my emotions this week as well since there was a death of a fellow ACH child that I've been following.  I can't say enough how this breaks my heart.  I didn't realized he'd passed away until reading it on Facebook and I felt instantly heartbroken for his family. 

Emmitt Reutlinger was only 20mths old and had a very similar story to Braeden's.  Emmitt's Momma contacted me about six months ago to say 'hello' and make the connection.  Both of our boys have two older, adoring brothers and both of our boys have shared many of the same wonderful Nurses and Doctors at ACH.  Much of Emmitt's journey was similar to B's in many regards but true to the sense that he too was an amazing fighter.  Emmitt overcame so many obstacles to live his short 20 months of life.

My first reaction had been devastation, for both Emmitt and for his wonderful family and then I got angry.  Why is this life so horribly cruel?  I've cried many tears for sweet Emmitt over the weekend, each time I see his sweet face in pictures (he had the most amazing huge blue eyes!) but I still remained mad.  What I came to realize (not so shocking) is that my life isn't really the "norm".  I don't know how many people live in a life where children just die.  Of course anyone can die, accidents etc. happen but because of B I've come to have a life full of the most wonderful children and their families.  The big difference is that these children die.  So many people that have become a part of our lives in the past two years have either complex care kids, chronically ill kids, or terminal kids.

I was actually in the mall on Friday night with B and I was watching a family walking towards me with five children in tow.  My first thought?  Wow, they are all (seemingly) healthy kids.  I started to look around and realized that most of the parents among me had 'healthy' kids.  How is that possible that there are so many healthy kids born sequentially to parents? 

My second thought?  It's too bad that they don't get to experience the life I have.  While I might live a life in which children die, I also have the blessings to live the life where children survive (even if only for a short time) against all of the odds stacked against them.  I get to watch these children fight and make people fall to their knees when they learn what these children overcome. 

I am so very blessed that I can kiss my sweet B tonight and hold him close but I'm also reminded that life is unpredictable.  Having a complex care child like Braeden is a blessing, I have learned to live my life each and every day (sometimes it is for each and every minute).  I appreciate all that is around me and the people that have come into my/our lives because of Braeden.

What I do know is not one of the parents that I've met that have lost their child regrets even a second of it.  We are all so very blessed.

So please, take a moment and send Emmitt, his Momma Ashley and their family a positive thought.  Close your eyes and send them a hug, imagine that positive energy reaching out to them and helping them along this horribly sad path they have to walk without him.  Ashley has also created a page for Emmitt on Facebook to raise awareness for Cerebral Palsy and to create a Foundation in his honour.  Please click HERE for the link.

Written by Ashley (Emmitt's Warrior Momma):

"Emmitt Angus, born January 20,2012 came into our life three months early. Dealing with severe medical issues, he began to impact many lives from his very first breath. Emmitt lived a strong 20 months and 8 days, proving to the world that he had a gift unlike any other.

This foundation is to keep his legacy living, continuing to bring people together for the greater good of mankind.
Creating Awareness for Cerebral Palsy Kids and Families"

In Remembrance of Emmitt Reutlinger...Rest in peace Sweet Angel and spread your wings.

From Our Home To Yours...

Praticing the Art of Letting Go

So I think, I think I've got B all cleaned out and ready to start anew.  The avocado oil (the grandiose idea) backed him up horribly, awfully, terrifyingly.  How, how, how does an oil supplement constipate a child?  I really don't know, it is Mr.B after all.

The sad part is that it took me a few days to catch on and by that point he was a goner, past the point of painlessly reversing it.  I had to watch my poor boy writhe in pain trying to pass 'clay' while (not so) patiently waiting for the PEG3350 (stool softener etc) to work through his system.

I was SO excited!  I was feeling SO pumped that maybe B could take some real food...Now?  Just feeling a wee bit deflated.  Certainly not defeated, but yes, deflated.

So we'll start again, we'll start anew.  This whole process of elimination stuff SUCKS.

 


Goofy Gus!  How I found him after his nap!

After some more careful research I am going to go with Coconut oil (which was what I was going to do originally!).  My hesitation with coconut oil was simply that it thickens when it is at room temp and if B had a mic key g-tube (removable tubing) I wouldn't have hesitated but now that he's got the PEG (permanent tube out of his stomach) it's different.  If his PEG tube gets clogged we're screwed, no food in, no air out.  As I said, I did a lot more research and got some great testimonials from other Mommas that have gone this route so I'm going to do it...I'm jumping back in, going with the original plan.

It is amazing how your perspective can change once you get a bit more experience behind you.  A year ago, when we were approaching B's first birthday I was so desperately hoping that he'd be able to try a bite of his birthday cake.  Now, when his second birthday is a mere month away I will be happy if he tries cake for the first time at his fifth birthday!

I heard so often in the first year how important it was to get him to start 'tastes' as soon as possible and how it was even more important to continue to persevere.  All good advice mind you and important but...there is always a but my friends.  If it gets to the point where the child is feeling pressure and stress, and the parent is feeling pressure and stress...there is just no possible outcome that is going to be good or pleasurable.  Again after looking back, (and talking to countless people that their kids started eating at 5, 6, 12, etc. and are doing great) I wonder why I succumbed to the need to 'do' things how I was 'told'. 

Parenting is all about gut feelings, it has to be.  There is no 'guide to parenting' that makes sense for all kids.  You can read as many books as you'd like (and judge all other parents on how they do things) but nothing, and I mean nothing will prepare you for parenthood. 

Now take into account all those books that get read and all those 'birth plans' that get written (didn't I have my head in the clouds!)...and you have a child with special needs that no one, even the doctors can understand.  There is no book of B (well this blog I guess is a start), it is all about my gut.  How many of us have said, "damn, I should have listened to my gut!" on more than one occasion?

What my gut is telling me now with B is that I am feeling like we are missing something (well lots of things but we have to start somewhere).  There is something more going on with B's digestive system, there has to be.  The question is whether or not it is in fact his gut or could it possibly even be his brain. 

I had a long chat with Dr.Cassie earlier in the week about my concerns and she was concerned when she saw how thin he still is.  I asked if it was possible that maybe he'd had another stroke, small enough that there wasn't huge signs but that it's affected his ability to digest and move food.  She didn't think it would be a stroke but we did do head measurements to see if his head has swelled at all.  His head circumference really hasn't changed (which is a good sign being as he's got extra fluid on his brain) so she was feeling confident that it wouldn't be a brain tumour (these are scenarios that go through my head at 3am, it's another thing to hear them voiced out loud).  She contacted Dr.V (at ACH) and they chatted about what the next steps should be.  I was waiting with baited breath about what they both thought we should do and the decision was made to...wait.  I hate that sentence, "I think we should just wait and see".  The problem is that his GI Dr is off work until mid October and really she needs to weigh in on all of this, it really is her area.  Am I in a panic that something needs to be done?  No.  But am I looking at this more and more that there is something else, something new?  Yes.

Torin making B his formula...such great boys I have!

For the time being I'm just trying my darndest to get this kid to gain some weight.  I think (shh, not too loud) that he's on the road to gaining again.  The avocado oil might have made him miserable but it did at least put some weight on him!  He is still on the move any chance he gets (even if it means dragging his head when he's tired) so it's hard to keep the calories going in.  Justine is challenging him to 'sit' more and more and we are all doing bits of 'standing' with him.  He gets right annoyed with us but I can also see he's getting so much stronger.

We also had a hearing appointment this week with the lovely Beatrice (Audiologist) and I felt badly for her since B was acting like he was being tortured.  Don't get me wrong, it stresses me out when B is so miserable with everything 'hospital' but it is also hard on the staff who love him.  We did successfully do a bit of testing (he's still testing the same, moderate loss on both sides) and we did manage to get new ear molds taken.  It is funny how one week his hearing aides fit and the next they fall out...do ears really have 'growth spurts' too?

I should have known that music class was going to be a bit of a stretch after the hearing appointment but we still persevered.  He clung to me pretty much most of the class, whining and yet he watched Sarah (music therapist) out the corner of his eye the whole time.  He did touch the 'rain' drum with one wee finger at one point!  Such a nut!  It wasn't  until the last song, at the end of the hour, that he let me turn him around.  When we were done I put him down on the ground and he squealed with glee and took off.  Everyone else was stunned that he was able to be on the move!  He was back to happy, laughing B since he was free to explore.

Funny faces with Justine

We had started our week with Rylan home with strep throat and ended the week with me sick with a head cold.  I started feeling rotten mid week and I just kept telling myself it was allergies (we've had to start the furnace this week, boo).  I just kept taking my homeopathic remedies and hoped for the best but I woke up Thursday feeling hit by a truck.  I wasn't feeling much better by Friday and the big boys only had a half day of school.  Justine (B's aide), bless her heart offered to take the big boys to her house for an afternoon adventure.  Justine has her own special needs sibling, Rachel, whom the boys are quite enamoured with.  I love their curiosity and their honesty.  These are kids that are going to be raised with thinking that people are 'different' if they don't love someone with special needs!

When I got back from picking the boys up from school Justine asked if I would be okay with her taking all three boys with her so I could rest.  Rest?  Alone in the house with no kids?  I mean alone??   Ready for it...I said YES (aren't you all proud of me?).  Was a nervous, oh hell yes.   Did I feel guilty, um, have we met?  But I still agreed and I still went through with it.  I was only mildly panicked as she drove my van away with my three precious cargo onboard.  As it turns out they all had a blast and I got to meet Rachel (and Chad who is here from Texas) when they came to drop off the kids.

I have no doubt about people coming into your life when you need them.  Justine came to us via Heidi (who you'll remember was with us for the summer).  Heidi has worked with Rachel (Justine's sister, are you following this?) for 6 yrs now so when she (Heidi) got a different job offer through the university she asked Justine if she'd be interested in working with B.  The interesting part (I'll wait if you're still trying to piece them together) is that Braeden has many similarities to Rachel.  Granted Rachel is now 21 but her beginning was much like B's is now.  Rachel has a difference in her 2nd Chromosome (it's not typed as a 'syndrome' because kids with the 2nd chromosome issues all present somewhat differently).  I looked up what that means (it's a long description, I'd have to get Justine to explain it), and the commonalities between B and the 'explanation' are certainly there.  Who knows!  I honestly have no idea of what the geneticists haven't looked at anymore since his DNA has been thoroughly looked at. 

Long story short, I am still in the learning curve of 'letting go'.  I have been so blessed with the help that has come to us via B.  When Ashley came to us I was able to finally begin my journey of letting go some of my stress and responsibility to B (when at home).  I was able to comfortably nap for the first time in a year and a half, knowing he was going to be okay (and if not she'd come get me in a hurry).  We then moved through Heidi and now onto Justine.  All three wonderful women, all very different, but all awesome with B (and the big boys too).  Bit by bit, little by little I'm trying to forgo some of my control.  I won't lie, it is hard.  I'm still going to feel guilt when I take the time to nap (even though I was up with B all night the night before).  Going back again to a year ago when I didn't feel as though I could or would want to leave his side, there is growth, for both of us.

Over and over again I hear that "you need to take care of yourself", and I know that it is true but it certainly doesn't come with a cost in and of itself.  Will there ever be balance in my life?  I don't really think so, not completely but then is there ever really?  The balance will shift as we sort through these murky waters of what is B and they'll shift back again when something new comes up. 

All in all at least now I'm starting to practice, after all practice makes perfect no?

My precious prince

From Our Home To Yours...

Can You Tell We're Related?

So did something last weekend that I'd would have thought 'unthinkable' a year ago...I went away for the weekend (the whole weekend even) to the West Coast to surprise my sister Marisa for her 40th Birthday.  For those of you that haven't read the whole blog (I know, it's long), I have these three amazing women that support me and guide (boss) me along my journey of life.  I have not one, not two but THREE big sisters!  I know I've certainly written about them before and what they all mean to me. 

I kinda might be the impulsive one among us (big surprise being the youngest I know), and so I brought up the idea of a 'sister's weekend' as a surprise.  The other two were completely on board and we started discussing logistics (they all live on the West Coast).  I didn't really stop and think for a moment what it would really mean for me to be away for an entire weekend without the three boys...it wasn't till I was booking my plane ticket that I started to feel a wee anxious.  The thing is?  Everything about the weekend fell into place, from having my in-laws here to being able to stay at my (most fantabulous) friend's condo for the weekend.  Even the planning and the reservations for our plans fell neatly into place...how could I not go?

I spent the week before at ACH with B wondering if he'd be going home in time for me to be gone or not.  I was kind of torn about the best option, for him to be home or in ACH under 24hr medical supervision...not that I doubted my wonderful husband for a second!  Things got a little rough when we trialed a new formula just days before I was set to leave and B had a horrible reaction to it.

Always seeking sunshine

The plan now that B is approaching his 2nd Birthday (in less then two months!!) he should be on more 'real' food (my opinion and the Dietician's).  We thought, after careful consideration and chatting with the other Dr's, that B should be able to try the Pediatric Complete formula (roast beef in a can essentially).  Of course the hesitation was more to do with the fact that it's a milk based formula and the thought (once upon a time) was that B might be allergic to milk.  His GI felt pretty comfortable that it most likely wasn't a milk allergy at all but just that he's sensitive to changes...

So we tried and I have to say I was a bit scared (to say the least) since our last attempt at changing to a new formula was disastrous with non-stop retching.  I was amazed that he handled the first feed without incidence, then the second and even the third.  I was floating on cloud nine on the way home that night thinking all the good things that would come with a new and better diet for B.  He was due to be discharged the next day since he'd done great and I was feeling like we'd finally turned another corner. 

When I got to the hospital the next morning I walked into B's room and he was mid-feed.  I looked at the formula in the bag and immediately said to Justine that it wasn't the same formula that he'd had the day before.  This formula was brown, no mistaking it and the day before it had been white.



You think you can keep me out...

I pretty much figured out that he'd not been changed over to the new formula after all the day before.  I immediately asked his Nurse about it and she double checked that he'd gotten the right formula that day and even opened a new can and poured it into a container for me to see the colour.  It was, you guessed it brown, not white.  So I guess we'd not trialed the new formula and he'd just been started that morning.  The good news was that he tolerated the first feed without too much change and I wasn't feeling totally deflated.  It was shortly before the second feed was due that he had his first retching episode.  Retched, vented, happy boy and second feed started...and second feed stopped because of non-stop retching...sigh.

Studious boy!

Apparently it is in fact a milk allergy.  The horrible part of it was that the first feed was going through his GI tract and he was miserable and in pain.  I felt terrible for putting him through it and never thought he'd get one feed in and then have his bad reaction.  He had a pretty rough day trying to work it through and the Dr came in to see me and said to me that he would be happy to do whatever I wanted.  I asked for B to be put BACK on straight Pedialyte for the next 24 hrs to clear out his system and to give his guts a break.  A huge step backwards for all of us.  Thankfully after the 'break' from feeding he was able to tolerate his feeds (regular formula) the next day and (finally) came home on Thursday.

Friday rolled around and I left that morning (after a little cry while putting Mr.B down for his nap).  I knew that I could go and I knew that it would be good for all of us to have a break and for Mom (me) to maybe find a touch of sanity (HA!).  I won't lie, that plane ride was awful and the guilt was miserable to deal with but I forced myself to look forward and knew I was only an hour long flight away from home.  By the time I arrived in Abbotsford, ate lunch and read uninterrupted I was feeling pretty excited about the weekend.

Long story short my oldest sister Christa kidnapped the Birthday Girl Marisa, (who was beyond surprised) and came to pick up myself and my other sister from the ferry (we drove to Vancouver and took the ferry to Vancouver Island for those of you not familiar with where I was going).  The Birthday Girl was shocked to see my sister Monique at the ferry terminal and as she was hugging her and crying I walked around the corner.  I'm not too sure if she was more surprised that I was there or that I'd in fact left B at home in Calgary.

We had a wonderful weekend, we ate, laughed, and ate some more and laughed even more!

And guess what?  We all survived!  Braeden, (the stinker) even pretty much slept through the night for Michael on the Friday night. (Although B had a miserable night on the Saturday night so I think that both he and Mike were happy to have me back on Sunday).  I think Torin's now forgiven me for going to his favourite place on the planet (with some of his favourite people) and I think Rylan has recovered from the fact that I took a plane without him (he's desperate to take a plane).

working hard

Mr.B still had some rough days last week and wasn't really back to himself (energy) till the end of the week.  The thing that scared me is that I could see that he'd lost weight in the short two days I was gone.  I knew that he'd not been gaining much but to be able to notice he'd lost weight was disconcerting.  We had him weighed at his therapy appointment on Thursday and I felt sick when I saw that he'd lost almost a full pound in the week he'd been home.  Certainly not the direction we were trying to go!  I was frustrated because I'd been getting no sleep (even less then normal) so that I could have him on continuous feeds at night so that he could get his full calorie count for the day.

His Dietician and I came up with the plan to start him on an oil supplement before his daytime feeds to boost his fat and calorie count.  I had found a great bottle of avocado oil on my weekend away and so I was happy to incorporate that into his diet.

The good news was the next day when we had him weighed at home with the Homecare Nurse she had him back up 200 grams so the weight loss may not be as bad as I initially thought.

I started the avocado oil supplement on Friday and he is seemingly tolerating it thus far.  He even had a (halfway to normal) looking stool today (fyi, I know but it's serious stuff in my house with B).  I have noticed he's got a rash on part of his face but I think (oh how I hope) it is leftover from the tape he had on his face Thursday night when we did another sleep study in ACH overnight.

32 probes on and ready for my (no) sleep study

I got a call on Wednesday asking if B could come in for a sleep study on Thursday night.  Sure, why not (the girl was shocked I said yes).  Off we went Thursday night to the (no) sleep clinic.  Mr.B was a trouper (of course) as he got the probes all 'glued' onto his head and body.  He certainly wasn't impressed but I expected him to absolutely freak out when we arrived and he saw the crib but he was fine.  I guess spending the few weeks before as an inpatient had some good qualities too.  I was however not impressed to learn that they would consider trialing him on c-pap possibly into the night...Braeden thinks c-pap is the equivalent to hell on earth (imagine a constant flow of air being forced up your nostrils and you having to breathe with it).

I have to say it was a pretty 'typical' night for B, he was up consistently through the night (but was just a little more angry then usual since it's obviously uncomfortable to sleep with bumps all over your head).  I'm not too sure how much info they were able to gather because he (and of course by proxy, I) were up a whole lot more then we were asleep.  It will be interesting to see if B was in fact 'awake' all the times he was freaking out or not (she couldn't give me a definitive answer).  We did not have to trial c-pap again though which was a relief AND it means that B's oxygenation when he's sleeping is GOOD!  Such a strong boy!

Snuggles with Angie

I am happy his lungs are getting so much stronger because illness is circling our house like a vulture and the hospitals have been seeing cases of flu and RSV already (very early in the season).  Rylan has come down with a bug of sorts (started like flu but is now looking like Strep) and is very sick.  All we can do is hand wash, hand wash, hand wash and sanitize like crazy each night.  I spent pretty much the whole weekend cleaning house anyhow so at least it is easier to maintain at this point.

Jenn and B (wearing the shirt Jenn bought him in Vegas
"I'm kind of a big deal")

We did have (yet another) successful Blood Drive again on Saturday.  The staff at the Blood Bank love to see how B is growing and changing.  I had the nicest man ever come up to me and ask if B was my son.  I replied, "yes" and he said, "Then I am so honoured to be donating today".  I LOVE the kindness of strangers!

We are off to see Dr.Cassie (B's regular Pediatrican) tomorrow and we'll have him weighed again there.  I am also going to bring up the notion that I'd like to have her consider getting an MRI for B since it's been over a year and I'd like to have a 'baseline' to go by for future.  I just have such a nagging feeling in my gut that we are missing something with his intestines.  I have no clue what, but it just really feels like there should be some sort of answer to why this kid was able to handle feeds of 250mls in an hour and can now barely handle half of that.  The scope last month showed nothing, the biopsies showed nothing and the new tube is in so the stomach has more space...there has to be another reason.  I'm not too sure if it is realistic for me to request or not (or receive) but we'll see.

the cereal workout

Mr.B continues to be on the move as much as possible each day and is continually finding new things to get into.  I've include a link (click here) of the latest YouTube video upload of B playing his 'cereal hockey' in the kitchen.  The kid just cracks me up, now if I could just convince him to clean up afterwards...

From Our Home (Finally) To Yours...

Blankie Stories III (Grandma Jean)

Blankie Stories III...

Dear Grandma Jean,

You and Pappa left today and I was so sad to see you both go.  I know that you have as much difficulty leaving me as I do letting you go home!

I wanted to thank you for the lovely blankies that you brought to me this trip.  My Mom told me that you bought them at the Lions Gate Hospital (where my Brother T was born) in North Vancouver and that you'll think of me each time you go there.  That's pretty suiting since my brother spent time in the NICU there when he was born (and my Mom thought that was stressful!)

I'll be thinking about you and Pappa when I go to sleep with your soft blankies covering me, the holes are just big enough for my fingers to go through so I can suck my thumb.

I love that you thought that I needed TWO, you must really love me Grandma!

I also wanted to thank you (and Pappa) for all of the walks you take me out on when you're here for a visit.  I love nothing more then being outside!

I'm also so happy for all of the chances we had for snuggles, I sure love Grandma snuggles (maybe even more then Pappa snuggles!).

I really hope that you'll come back soon, my Mom said that she's missing you both already!

Thank you for being such a wonderful Grandma and spoiling me when you get the chance, I just love you and miss you so much!

Love,
Your Sweet B
xoxoxoxo (you can share with Pappa if you want)

P.S. You don't have to worry quite so much about me Grandma, I'm one tough cookie!

P.P.S. Mom cried writing this so you don't have to be too annoyed at her for making you cry reading this!

Walking With Grandma

Author Unknown

 

I like walking with Grandma,

Her steps are short like mine.

She doesn't say "now hurry up"

She always takes her time.

 

I like to walk with Grandma,

Her eyes see things like mine do,

Wee pebbles bright,

A funny cloud,

Half hidden drops of dew.

 

Most people have to hurry,

They do not stop to see,

I'm glad that Grandma was made

Unrushed and young like me!

From Our (Emptier) Home To Yours...