Thursday, 30 May 2013

Bards, PEGs and Blue Babies


I know I've said it before but Dr. Mary Brindle is such an amazing Dr and person! 

Mr.B had an awful night (again) and I even packed a bag at one point thinking that I was going to have to go into Emerge.  I'm not sure which is more difficult trying to get some sleep with this kiddo or trying to keep his oxygen in while he's thrashing around with night terrors. 

We survived the night (barely) and went into ACH to our appointment with Dr.Brindle.  Dr.B was happy to see that the wrap (fundo) is still in place and she told us that the g-tube placement is still okay as well.  From a retching standpoint it still doesn't give us any answers but we did discuss the possibility of changing out to a different style g-tube (again).  The options that are left are the Bard and the PEG both which come with their advantages and disadvantages.  The Bard is another skin level device (plus) but it also won't be any easier to vent (minus).  The PEG is a bit more permanent as it has to be surgically placed and is supposed to last a year or two (until the site has to be adjusted for stomach growth).  The PEG is the easiest to vent (huge plus) but it isn't a skin level device, it has a long permanent tube attached to it (minus) AND if we have an issue with it it is certainly more permanent.  Dr.B has to put the PEG in via surgery but she suggested that if we were even to chose the Bard that she's still want to do it in the OR to save him the additional trauma. 

We basically decided that surgery is in the future today, that much we know.  Dr.B is hoping that Dr.Wrobel (GI) will want to do a thorough scope while he's under so that we can better understand B's gastro anatomy as well as a ph test to check our his reflux.  Dr.Brooks (ENT) would also tag in and place new ear tubes in B's ears (more permanent version that should last a few years) AND I'm going to contact the Eye Lid Plastic Surgeon tomorrow to see if he can see B sooner rather than later because if he thinks surgery is the best option for B's eyelids then we'd like him to tag in as well.  It might seem like a lot (it is) but when you weigh the risk of intubating him and anaesthetic we might as well get it all done.

Dr.B then offered (bless her huge heart) to send us down for an xray and told me to come back upstairs and she'd review it with me.  We trooped down to DI and they took us in right away.  As always we had wonderful Techs there and they got B into the 'stand' quickly.  As often happens with Mr.B when he gets upset is that he holds his breath.  This time was no different except that he doesn't have much for oxygen stores in his blood right now so he turned a nice mottled shade.  The Tech offered us oxygen but I did bring a tank with me and told her I'd hook him up when we got out of the room.  He continued to be upset and I wondered out loud what his Sat's were and the Tech said she could get me a Sat monitor.  The first monitor didn't work so they had to go ask the Nurses for one.  In the meantime we got him some blow by oxygen since he was turning a nice shade of blue (still screaming).  We got him hooked up and after a short while his Sat's did go up to the mid 90's (even jumped to 98 shortly) so I was satisfied.  The Nurses were still concerned about the drop he'd had and they were talking about whether or not to call the STEP Team (Critical care rapid response team), to which I quickly kiboshed that.  If the STEP Team were brought in then they would certainly keep us there (and I wasn't concerned anymore about his Sat's).  I explained that we were headed up to see Dr.B again right away, that we'd be in good hands.  When they asked Ashley to come in the room to walk us upstairs she was a little surprised to see so many people there!  Nothing like a blue baby to bring the staff running!

We headed back up to see Dr.B and she showed me the xray.  It certainly has striations on it (pneumonia) but it was actually slightly better than his last xray in April (although he is seemingly sicker this time).  Dr.B was really on the fence to on whether or not to admit him as was I and I asked her if I was just digging my heals in too hard and if he should really be admitted.  Dr.B was satisfied with me taking him home and just waiting to see where the sickness would lead us.  When (and I mean when) B is back on his daytime oxygen he is certainly more settled and breathing easier.  It might just be that he needs some extra support right now.  Dr.B did let me know that if it does get worse then she'd be more than happy to admit him and therefore we can avoid Emerge.  Dr.B also let me know that she'd call us if the Radiologist's report gave any other indications of what was on his lungs.  I didn't hear back from her this afternoon so I'm assuming that the Radiologist didn't have any other revelations.

So once again with B we sit and watch and wait.  I am hoping for a bit smoother night tonight but am not exactly hanging too much weight on that. 

And so it goes.

From Our Home to Yours...

Wednesday, 29 May 2013

Back to Daytime Oxygen

We had an interesting morning around here today, the day started with our HomeCare team coming in for our monthly visit (Nurse Luci and RT Shawnee).  Mr.B was not impressed at having a stethoscope anywhere near him and was fussy throughout the visit.  The last time they were here we trooped into the Emerge after the visit as B had poor air entry into his lungs (had a partial collapse and/or pneumonia).  Today his lungs sounded way better then they did last time but unfortunately Mr.B wasn't able to keep his Sat's up (oxygen).  B's typically Sat's 96-98 off his oxygen but today it was a struggle to get him as high as 93 and he was also dipping into the mid-80's when he was fussing.  Not that big of a deal, Shawnee was happy that his lungs sounded good and wasn't immediately concerned with the Sat's.

We've gotten so used to seeing him without his o2
I called into Respiratory to get him into an appointment and explained that his Sat's were low(er) and that he was losing colour and Sat's when upset.  I had a crazy swollen eye this morning (some type of allergic reaction) and Rylan home sick from school again so when the Nurse called me back (from Resp) I was certainly surprised when she told me I had to take B into Emerge.  I asked if I could wait until Thursday (when Ashley is here) as I had a sick 6 yr old at home (and a swollen eye for driving) but her answer was, "Wellll, it's your choice, you know him best BUT my advice is to take him in...". 

Now don't get me wrong I'm concerned that his Sat's are lower especially since he's been retching SO much and there is always a possibility of aspiration but I certainly didn't have it in my mind that he needed to go into ACH.  I called Mike to tell him and pretty much burst into tears, it would just break my heart to take him in when I know he's happy at home.  Mike's advice was really what choice do we have?  He was right (shhhh), I was doubting myself and the thought of not taking him in and then something happening would be too much to take. 

Getting tangled in the tubing
I decided to double check with his Nurse and RT that had been here this morning (as we'd never discussed the possibility of taking him in) and we made a group decision that he didn't need to go in right away as his lungs sounded good (and none of us had a 'gut' feeling which is way more reliable with a kid like B most days).  Now of course this IS Braeden and he's had full blown pneumonia before with clear sounding lungs.   We decided to do another 'watch and wait' with B and have put him back on his oxygen during the day (when he leaves it on) and here I sit.

These tubes are a pain!
Mr.B is definitely finding it mobility more difficult with the addition of the oxygen tubing!  He gets himself nicely tangled up as he rolls and finds his way around the floor.

We do have our appointment with Dr.Brindle (surgery clinic) tomorrow so we'll get a chance to find out her opinion on the retching and reflux and we finally get in to the GI Dr. on Monday.  As always with Braeden, it's never one issue but has to seemingly be several at a time now that we've added the night terrors.  I've gotten some great advice from other parents and suffers thus far, thank you for that.  I'm trying so very hard to be patient through them each night but I have to say that I thought that I was already exhausted but now with the addition of the multiple night terrors it takes it to a whole new level.  Now if I could JUST find that magic wand of mine...

From Our House to Yours...




Tuesday, 28 May 2013

Tying My Knot to Hang On

Night terrors, UGH about sums it up.   

What does this mean?  I'm certainly learning about them now that's for sure.  It's funny (not really) when I look back through the past few months of no sleep I actually think that the 'terrors' have been happening for longer than I realized.  When B has his worst nights he is generally waking every 20 mins or so and crying out in pain, he'll change position and settle back down only to wake 20 mins later.  There were many nights when I couldn't wake him completely (didn't know I wasn't supposed to), and could not get him to settle and would have to 'shock' him out of it by turning on the lights.  I realize now that he is in an in between state of sleep and waking here when this is happening.  From what I've read night terrors are supposed to last for 1-5 mins...B's are generally 20+ mins of thrashing, crying out and tossing around his crib.  If I do try to settle him he generally tries to thrust out of my arms but if I am to put him back down he'll scream out and cry...sigh, it's a little rough some nights, I'm not gonna lie.

Such a big boy!
Apparently, also from what I've read (thanks google), is that kids usually only have one episode not hours upon hours of them.  Gotta love our Mr.B, he truly is an overachiever!  The hope is that we can get in to see Dr. Mahan (sleep psychologist) again in June and maybe (fingers crossed) she can give me some answers.  The hope is too that we get into the sleep clinic sooner rather than later as I'm not too sure how much longer I can keep all this up!  The last two night have been brutal with B having short little 'sleeps' (5-10 mins) between the 'terrors' from 11 pm till 5:30 am this morning.  Add in the retching, issues with feeding and top it off with a six yr old home with a sore throat and I'm feeling a little overwhelmed today!  (All I can say is thank goodness for Skylanders because Momma isn't all that with it today!)


This isn't so bad!
We are still trying to figure out the issues with the retching and why it has increased so dramatically.  We go back to see Dr.Brindle on Thurs to get the full contrast study report and see what she thinks.  I had a 40 min conversation with his Dietician today as well and Kelly kept saying "well most kids..." and I just laugh, B is certainly NOT "most kids".  I am feeling a little dissuaded that we may not find an 'answer' to the retching and this might just be B.  Kelly and I talked about switching him back onto 5 feeds a day so that it won't take 2 1/2 hrs for one feed to run but then I lose out on what little sleep that I do get.  It's always a give and take, which I suppose is the way of life.  The other thought we struck upon is because of the constant teething and increased secretions with that, that they are not being swallowed past his fundo and triggering him to retch when they build up...who knows!
 
We are also still waiting to hear from GI to see if she wants to weigh in on this or not.

Enough with the negative, B is moving more and more and it is SO exciting to see!  He realized a few days ago that once he hits the hardwood floors he can really zip backwards.  You know initially when you hear the words 'Cerebral Palsy' you (well me) had visions of a child that most likely wouldn't crawl or over possibly walk.  This kid blows away any expectations (or lack thereof) that I might have had.  B is 'crawling' in his own Mr.B way and he is getting stronger.  I should know by now to never put any expectations on him, he's going to continue to teach me that I'm wrong more often than not!  We are certainly finding that we need to keep a closer eye on him now, he gets himself into all kinds of 'small' spaces.  He is certainly enjoying his mobility though, he tends to squeal away as he's moving as if to say "Ha! Look at me go!". 


Araya and Momma Kels
The other wonderful positive is that we all trooped up to see 'our' new baby, Araya this weekend.  It's so funny that my first thought was that she is SO tiny (she was 6.1 lbs at birth).  I can't even remember B being even smaller than that!  I guess because we really only saw his 'tiny' self for a few short days when his swelling from birth came down and before he went Septic (less then a week later) and swelled up to twice his weight again.  I think I only held him twice when he really was his itty bitty 4-5 lb self. 




Araya (of course) is very precious and sweet and the boys are all head over heels (including Michael I think!  By the look on Mike's face when he was holding her she's gonna have him wrapped around her finger no problem!).  Mr.B wasn't completely convinced since Momma was holding another baby but he'll adapt soon enough when we spend more time with Araya and her Momma Kelsey.

"When you get to the end of your rope, tie a knot and hang on!" -Franklin D. Roosevelt

From Our Home to Yours...

Friday, 24 May 2013

Down Came the Rain

It's funny how after only three days of straight rain in Calgary and I'm done with it.  I don't know how I survived so much of my life on the West Coast, the rain is draining emotionally and physically.  I guess I can't really blame all of my current mental state on the rain but it certainly doesn't help!  It's a rough day, well rough morning so far, guess I should try for higher hopes for the day.  Every once in awhile life just catches up on you when you run from it long enough (at least that is true in my case). 

Part of my rough start to the day was that Mr.B had the worst Night Terror yet last night.  For those of you that haven't witnessed a night terror, the child (Mr.B) screams and thrashes about while staying mostly asleep.  B was so far into it by the time I got to him I wasn't sure if he was actually even able to breathe as it sounded like his windpipe was restricted.  The hardest thing to do through a night terror is to not panic yourself.  This one was such a doozy that Mike even woke during it and got to witness one first hand.  One of the few things that 'help' (when you feel helpless) is to turn on the lights and it helps to 'shock' him a bit.  It lasted for a good 20 mins last night, with me holding him and alternately talking and singing to him with the attempt to soothe him while he 'slept' through it.  I know night terrors are somewhat 'normal' in kids but B is only 18mths and with all the trauma he's endured it breaks my heart.  It's hard to not think the night terror was due to the stress he endured by having to go through the contrast dye test yesterday.

The other part of it is that there have been a few deaths in the past month, no they are not my family members or even close friends but I feel a kinship to them nonetheless.  It doesn't matter where you are from, if you hear of another Mom suffering after the tragic death of her child after battling life from the start, you feel.  Close to home this week ACH lost a little one, Baby Hope who was born without the left side of her heart.  I didn't know Hope, or Hope's story really but I did know her Mom in passing to say 'hello' in the hallway.  There are so many of us at ACH that try to fight the good fight each and everyday  and you think that maybe, just maybe your life might get simpler one day.

I have to say that there are not many of my friends that have an idea in mind of what their child's funeral may look like in their minds eye.  Not many people, in their dark times, plan and try to imagine how life will possibly go on after losing their child, the love of their lives.  But some of us do, I know I do.  So many times I get asked by you or other parents with ill kids how I can possibly stay so positive.  It's not something that just comes naturally to me all the times, sometimes it's really really hard, but what it is to me?  A choice.   I choose to try to find a positive in each and everyday.  It is certainly much harder at times, days like today (when I cry while driving to drop off the 'big' boys to school for no apparent reason), when I feel the crush of panic mixed with non-stop exhaustion that I have B on a timeline.  I just want to shake the hell out of the sands of time for a definitive answer, I want to know dammit how much time I have with this child!  I had a discussion with another Momma of a sick little one yesterday about losing Baby Hope and she said it just makes it so much more clear that she could lose her daughter too, no one is 'safe'. 

How do you ever come to terms with a critically ill child?  You don't, you just live really.  I have times of great clarity and I have times of complete and utter depression and failure.  If I don't try to find a minute positive in my day to day life then on those dark days I will get eaten whole and my family needs me, heck, I need me.

There are days where it would seemingly be easier to just push everyone away but I've done that at other times in my life and it didn't work well for me.  So many of you are now invested in B and his little life story (and for that I am so very grateful for you love and support).  I see other parents deep within their grief for their ill/disabled child and I see ones that are trying to bring about positive change.  Not one parent is 'smarter' or 'better' than the other, we just deal with what life has handed us differently.  If you are friends with a parent that is the type to push everyone away, don't take it personally, it's really not about you.  Don't abandon that friendship (even if it seems as though the parent may have), keep making contact in small ways by letting them know you are there.  You can't be in the friendship if you need a response from the parent to feel validated she/he may just not have it in them.  Every positive comment and a simply 'you are in my thoughts' goes a really long way to helping that person not feel so alone (although it may look like that's how they choose to live).

Our children are all unique and fragile, life can be too short for any child so hug them, nurture them and just simply L-O-V-E them always (even when you are frustrated/angry/done).  While you may not be able to understand what we are going through, the constant rollercoaster of Mr.B, your support, kindness and  love will never go overlooked (even if I can't seem to form a timely response to you).

I got a call late on Weds afternoon from Diagnostic Imaging that they had squeezed B into his contrast test Thurs (yesterday).  I was relieved to get it behind us but I also felt the slow panic that comes with this test each time it happens.  There are only a few things in Braeden's life that really stand out to me, so much of it is a blur but one. The day Braeden had to be 'coded' Code Blue is a day that will always stick with me.  I can replay it in my head like it is in high definition colour.  Knowing this same test was the start of the chain of events that led to his code that day just makes my stomach clench.  Know I am well aware that Mr.B is so much stronger now, so much more prepared for the tests that they throw at him (not that he is happy about any of them). 

We got to ACH yesterday (I thankfully  had Ashley along with me) knowing that it was going to be a great day (test aside) because we'd been able to arrange a short (but sweet) visit with Braeden's first ever room mate Parker (NICU) and his Momma Jaime (Happy Birthday today my friend).  There are few things as rewarding as seeing a wee one from the NICU being silly and being a 'baby'!  I got to shamelessly snuggle Parker (would've snuck him in my diaper bag if I could've).  Sometimes in life you just find someone that you 'click' with and Jaime is certainly one of those!  She offers me/us strength and love from afar and we have some similarities as Parker is her youngest of three boys as well.  We are obviously on different journeys in our lives and yet the same.  We hope that we can meet again soon so that they boys can 'roll' all over the place together!

It was also a pick-me-up day at ACH because when you stand in the cafe at centre court at 12:30-1pm you tend to see all kinds of lovely people you know!  We always love the chance to see any of our ACH family!

Over to DI and we walked into register and B started to cry.  He's had more than his fair share of imaging to know where we were.  It's so hard now with B being aware of his surroundings, he knows that he's there to be poked or prodded.  We always see familiar faces at Diagnostic Imaging though and they are always happy to see Mr.B.  (It was the AMAZING DI team that sponsored us for Christmas this past year).  The test itself went well, we had the lovely Theresa there as the nurse and Dr. Haider there to read the scan as well as a second Radiologist.  B tolerated the test better than expected and everyone got to be serenaded with Maroon 5 and Fall Out Boys songs (by moi), anything to make my sweet boy more at ease.  The prelim results are that the Fundo is in fact intact still, they could see a good wrap still.  His stomach seemed to be emptying well and there were no major blockages spotted.  Great right?  Yes, great but that also means no answers as to why B is unable to tolerate his feeds properly or why he is simply refluxing so bad when the Fundo wrap is there.  I am grateful that the test is over and done with at least and I look forward to meeting with Dr.Brindle next week to see what her opinion is to move forward.  The Motillium isn't making a considerable difference thus far either so my frustration is certainly high.  I can maintain feeding him over 2 1/2 hrs but I'm not sure how much longer B will tolerate him as it leaves him 'upright' and 'strapped in' for that period of time.  Not to mention my already lack of sleep coupled with B retching in his sleep with the ever present fear of aspiration into his lungs.

Not that life is meant to be simple...

I got a call the other day as well from Braeden's GI Nurse and she informed me that B's file is 'closed' with Dr.Wrobel.  How on earth could that make any sense?  This is a kid with his intestines surgically altered, he's gonna have a few GI issues through his journey not to mention he's on a daily med that she prescribed...yeah.  Anyhow we are now waiting for that to be sorted out and for Dr.Wrobel to come back from her week away to get in to see her.  Sometimes (just sometimes) I think of how much easier it could be to have him admitted then things happen on the Dr's time, not ours.



The update on the rest of our day is that it got better, Heidi and I took the boys out bowling in Cochrane and we had some good laughs.  Why sit in the rain when you can go bowling or...


From Our Home to Yours...

Tuesday, 21 May 2013

It's a Girl!!!

We had a Girl, yippee!!  Okay, I need to settle down a moment and explain that I didn't actually 'have' her and she's not actually 'mine' per se...but our lovely Kelsey (Torin's former Developmental Assistant and now honorary family member), had her and so by proxy I get to share her!  Araya Rose is the name and she's just so stinkin sweet!


March 2012
I also want to say "Happy Birthday" to my favourite oldest Sister!  She is beautiful inside and out and completely selfless in her drive to help people, we love you and miss you so much Keeta!  Come visit soon!!


Mr.B is (still) keeping me on my toes, you just never really know when he's going to have a gagging/retching episode.  I've increased his Motillium since he couldn't get all of his first feed of the day finished yesterday without retching again and again.  Then as if to say "ha, I can do this" his next feed went off without much fuss (and the added amount of Motillium beforehand) but then he couldn't tolerate his subsequent feed...I just don't know!  It's not like anything with B is straightforward, I get that, but it is incredibly hard to find the issue when sometimes he's good and others not.


I run a VERY serious household!
If I had to say (after thinking about it long and hard) I would say things are a tiny bit better?  He's having feeds every once in awhile without retching through them, just after, so that's progress right?  I am still running his feeds over 2 1/2 hrs and that is a challenge in and of itself as B isn't happy to have to 'sit' up in his tumbleform seat for hours on end, he wants to move. 

Getting stronger!

We had friends over this weekend who haven't seen him for a month or so and they commented to me on more than one occasion at how strong he is getting.  That is so good to hear because when I see him 24/7 I know he's progressing but have no idea at what pace most days! 

Helping Momma clean the basement!
Of course in B fashion through all the retching and such he remains happy and positive, I try to hard to maintain the same but I certainly can't/don't do it with the finesse and ease that Mr.B has. 

Bob's got nuthin' on this kid!
I am trying to 'plan' (ha ha) a road trip out to the West Coast this summer with all three boys.  Not to worry, I've been told more than once that I'm 'crazy' for considering it.  The thing is when I travel I don't do it on anyone elses schedule other than ours (those of us in the car) and it is good for Torin and Rylan (and Me) to get out of town and to see family and friends.  It is also increasingly important to me to introduce Mr.B to more of the world and those important people in our lives that are unable to come out and see him.  The thought of dipping his sweet toes in the Pacific just makes me smile!  Maybe I am crazy but crazy has gotten me this far in life and I think I'm doing not too bad! 

Just hanging out


I have no idea if and when it will happen but I think it will be great if it does.  I know where all the pertinent hospitals are around our destinations and we will be doing things Braeden-style, slow and easy with smiles on our faces!  Memories are always better if they are 'made' and it is so important to me to have Torin and Rylan have positive memories of this hard time in our lives.  My older sons have gained more life experience in the past year and a half then they maybe should have (not that I would change that) so if I can put a smile on their faces and build lasting memories then I will!

Fingers crossed we get in to see B's GI this week and that Radiation calls for his contrast scan soon (did I mention this kid glows in the dark?)!


Thursday, 16 May 2013

Possible Solutions

Thursday is here and we are off to surgery clinic this afternoon...finally.  I really have NO clue to what Dr.Brindle will think or what our options will be but I just sincerely hope one option involves some respite for this kiddo from the constant pain of reflux and retching. 

It was another incredibly rough night for B (and by proxy ME) last night with him waking and uncomfortable (kicking and thrashing) every 20 mins or so.  I am usually able to 'go with it' when B has one of his 20 min waking nights but last night I was just so tired and so frustrated.  I was patting his wee bum (which was the only thing to settle him) and my arms got so tired.  I would fall asleep, standing there patting, and he would scream again startling me back awake and back to the pats.  By 4am I was frustrated and annoyed and with any kind of frustration towards B comes all-consuming guilt.  I know I'm just tired, I know he's not feeling well and I know that it will end at some point (oh how I hope) but when it's been going on for 5 hours straight it gets to all be a bit much.  I know many of you will say that I am doing my best, which I appreciate but it doesn't assuage the guilt I feel.  I guess it's not even really frustration with B directly, more of a frustration of life.  Guess I just have to admit I am human.

People will often ask me how it's going and my usual response is how tired I am with B's lack of sleep. They will offer all kinds of helpful advice and antidotes of their own lack of sleep with their own kids but I don't think people really believe me when I try to explain how B truly has nights were he sleeps in 10-20 min increments and nothing/no one will settle him for long.  Usually on those night I have to remove all stimulus from the room (including the light on his monitor) so we are in complete darkness and if that doesn't work then all the lights go on (it can 'shock' him out of the cycle) and I have to wake him completely and start from scratch (which usually involves him playing for a bit while I try to snooze).  Needless to say, the sooner we get into the Sleep Clinic (to measure what is going on with his body at night), and the sooner we can deal with the reflux, ALL the better!
B's self portrait today!

On the positive side of things, I tried to grab a 'quick' shower (jump in, hope I hit all the important areas and jump out, hoping that feeling in my hair isn't conditioner I forgot to rinse), this morning when B started to retch almost immediately into my shower.  I hop out, hair full of shampoo, dripping wet ready to vent him when I realized he'd stopped.  Torin and Rylan had been able to distract him long enough for him to deal with the extra fluid in his throat.  What amazing children I have!  How many people can say that their 6 and 8 yr olds can handle watching their brother retch and not breathe properly while staying calm and trying to 'help' him by distraction?  I a SO very PROUD of my children and their abilities to cope with the stressors in our house, they will be amazing men, I just know it!  I had to decline but my sweet T did offer to vent B for me...did I mention he's 8?!

Thankfully T is seemingly on the mend although still has a very sore throat, and Ry is back at school.  The great news is Heidi (new hire for B and T) is coming for a few hours today (first time) to stay with T so I can take B to his appointment.  I am SO grateful for that as I can't take a 'sick kid' to the hospital but also can't bear waiting till the next time we can see Dr.B.  It will be a nice opportunity for Heidi to get to know T without any of us around!  She might be a bit talked out about phones/elevators and ceiling fans by the time I get back but I am thinking she can handle it!  Did I mention how thankful I am for the people in our lives?

So much stress but also so much to be thankful for...

UPDATE:  Our visit with Dr.Brindle went well and she wants to 'tread slowly' with B since he is so complex.  We are going to give Domperidone (helps motility of the stomach/gut) a try to see if emptying his tummy faster will give him some reprieve.  She's ordered a contrast test that traces the stomach and the gut with contrast dye while being xrayed (yes the same test that he had to be 'coded' after and yes, more exposure to radiation).  We're also going to hopefully check in with our GI Dr for her opinion in the next week. 

Dr.B is happy to do the surgery if that is in fact our best option but she is aware of how complex B is and that the last surgery was a 'virgin' surgery with no scar tissue and such.  Fingers crossed that the drug will make a difference at least enough that B can be somewhat more comfortable.  She told me that as long as all of the current issues weren't disrupting our lives to the point of being 'unliveable' (not sure how to quantify that at the moment), then we can keep him at home (and avoid a possible hospital infection).  He's already had his first dose of Domperidone so my fingers are crossed so hard they hurt!

I am very relieved (not that I had a doubt) that Heidi is a good fit for us.  When I was leaving for the hospital I said, "Thanks so much for taking care of my kid(s), guess I should ask your last name!"  It is so funny but completely true when you hire someone to work with your special needs kid(s) you have to have a 'gut feeling' about the person(s) you invite into your home.  We struck gold with Heidi, she and T donned "Super Hero" (0ur Autism Speaks) capes and went for a walk.  I just wish I'd been here to snap a picture!!

No sure-fire solutions (not that I ever expected one) but all in all a good day since we are at least on a forward trajectory with B!  The great news today too is that Dr.Fruitman called me this afternoon to let me know that Ry's Holter Test came back 'normal'.  That is a great relief that his heart is strong!  We don't have a reason for his bouts of chest pain and Dr.Fruitman will keep an eye on him but for now we can just proceed with life as 'normal' (whatever the heck that means in this crazy house!).

From Our (getting healthier) Home to Yours...

Wednesday, 15 May 2013

Who the Heck Invited the Flu to the Party??

It is days like today when I am so thankful to see the end of them.  It is also days like today when I am so very thankful for the people I have in my life.

It was a rough night for B last night, but more of the same, not any worse really.  It was the crying at 4am that through me off my game though, not a baby cry but a big boy cry.  My poor 8 yr old had thrown up (in bed of course, where else do kids throw up?) and was sporting a nice high fever.  It seems as though the flu decided to come calling.  I spent the next hour trying to get him to keep down some tylenol to get the fever down and held a cold cloth on his forehead trying to coerce him back into sleep (after of course ripping his whole bed apart and doing laundry at 4am).  All the while I had one ear on Mr.B to make sure he wasn't retching in his sleep, I was trying not to be to loud so that I didn't wake up Rylan (in the same room) or Mike (who had to be up in an hour for work) all while trying not to just go crawl in a corner and weep from exhaustion while waving my white flag.

Somehow, as all Parent's will contest to, you get by, you somehow slog through it.  I crawled back into bed as Michael's alarm went off and got a fitful hour of sleep before B was up retching again,  Of course B retching somehow triggered off Torin dashing to the bathroom and begging for Mommy.  Sigh.  If only one could clone oneself.  Thankfully my children are generally very patient and amazing when I tell them I have to deal with B first but I felt such guilt this morning that I couldn't comfort T at the same time.  My children really don't ask for much other than love so it saddens me when I have to give it from afar.  Back to the bathroom to clean up T (again) who now has it coming from both ends (TMI?) and to attempt to soothe him back to bed.  Mr.B finally somewhat settled in my arms on one couch, T somewhat settled on another couch (bucket on hand) and a 6 yr old that comes strolling out to say he doesn't feel 'quite right'.  Of course he doesn't, of course.  Now I'm not looking for sympathy (ok well, maybe a little) because it is when you weather through the 'crappy' days (ha ha) that you get to proudly display your 'Parent' badge.

I thought the only kind thing to do was to give Ashley the 'out' this morning to not have to come to work in the 'House of Flu' so I pretty much wept with joy when she told me she'd still come.  Can I tell you how lucky I am??  Ashley agreed to watch over B so I could deal with T and Ry and that sounded like a pretty amazing deal to me.  The funny (?) thing is after Mr.B's night I would have taken him into ACH today after taking the kids to school and we would've spent the day in Emerge.  As it was we didn't go in again today and we made it through another 24 hrs at home (because of Ashley).  Because of Ashley, I got an hour and a half sleep (wow) AND a shower today!  Pure B-L-I-S-S. 

It is days like today that I am reminded just how many wonderful people I have in my life, from those of you sending out positivity and encouragement from my Facebook Page , (along with the reassurance that it would be okay to have a vodka tonic for breakfast!) to my wonderful friends that call or text to see how we are faring.  A very large thank you (again) to Ashley for coming through for me/us today and helping me sort through the piles of laundry, not to mention bringing her positive energy into the house. 

I also need to take a moment to thank my wonderful friend Rachel Kuhle for ALL that she did and does for us.  Rachel (and her kind husband Nathan) have been my 'back up' parents for Torin and Rylan so many times that I can't even count that high.  I don't know how many times I've had B at the hospital and Rachel has so kindly (and never with a complaint) watched the boys for me till I get there or taken them home and fed them (again).  It has taken a huge load of stress off knowing that I can count on her as my back-up in a pinch.  I do feel badly that our friendship isn't a balanced 50/50 and when I mention this to her she tells me (in her graceful British way) that friendships don't have to be that way at all.  When I called her to whine today that my life indeed sucked she told me she was making me dinner.  After the back and forth of "no, really, it's okay" and the "but I want to" and so on, she basically told me to suck it up, put on my big girl panties and just graciously accept the offer (not that she would ever say it in those terms!).  I agreed to accept the help (begrudgingly as I seem to have this theme of not being able to accept help) and she told me she'd drop off a hot dinner later.

Such attention to detail!
The day progressed, I won't bore you with the all the fun parts but we made it to the dinner hour (which is a funny term because dinner can happen in my house anywhere in a 4 hour period) and I get a knock at the door.  Rachel is at my door with an entire bin of food, all hot, all homemade and fresh.  This woman, mother of two, just getting over a flu herself, made us a roasted chicken, oven roasted potato wedges, carrots, broccoli, an amazing quinoa/green/pear salad, hot gravy AND fresh (still hot) muffins!!  I quickly proposed marriage (of course, duh!) but she politely declined (damn).  I had to take a picture to that attention to detail she put in right down to the 'fresh' carrots for Rylan as he doesn't like cooked (I think she's fed him more than a few times at her house).  WOW!  Rylie walked into the kitchen as I was unpacking and said, "Oh yay!  I love Ms.Rachel's chicken dinner!".
I can't imagine having a wife that would cook like this for
me!  It was SO very good!

 

So it might have been the backside of a crappy day but I am so blessed and thankful for all of our friends, family and neighbours.  I've got SO many wonderful people in my life that are so fast to offer us a hand with the big boys, a hot meal or even a lawn mow!  You know who you all are, you are my sanity (if there were some left I suppose) and I SO appreciate all that you are and all that you do!  This isn't nearly enough to do it justice but, THANK YOU (again)!!!

Now if someone wants to come take care of my geriatric cat who just threw up (on the carpet, why is it always the carpet when I have hardwood everywhere else??) and has added a smear of something stinky to my duvet cover...sigh.

Onwards and upwards, tomorrow is yet another day in the life!



From Our (sick) Home to Yours...


Tuesday, 14 May 2013

Chance Meetings?

Sick boy snuggles from my Auntie Lorna today
So the craziest thing happened today!  About two weeks ago I was suddenly thinking about a Momma and her wee (and I mean wee 24 week-er) that were with us at Foothills NICU when B was born.  We chatted briefly a couple of times, more just Mom's seeing another Mom as terrified with the unknown as I was.  You form some kind of kinship in a NICU when you spend hours watching others around you and wondering if their child will survive.
 
When B got moved up a few beds out of the "sickest baby on the ward corner" little Mia got moved to a more isolated area since she was really struggling with the noise and stimuli around her.  I know her Momma was feeling very stressed and overwhelmed with it all, just like me.  Mr.B got transferred (quickly) to Stollery in Edmonton shortly thereafter for heart surgery and I didn't see them again. 
 
For some reason they just popped into my mind a few weeks ago and I was wondering if wee Mia had survived because the last time I'd seen her Momma Kelli she was terrified she (Mia) might not make it.  Oddly enough a few days after thinking about them I saw them from afar at Children's.  I couldn't believe it, what an odd coincidence.  I was so relieved to see her carrying who I could only assume would be Mia in her arms.  I thought how great it was that I thought about them and then got to know that Mia's 'okay'.
 

Everytime I put oxygen on him before sleep and everytime
I check on him this is what I find!
We had an emergency trip to Dr.Cassie's office today (Paediatrician) because B's has had an increased work of breathing in the last 24 hrs and my biggest concern is that he's aspirated (taken fluid into his lungs) since his vocal cords don't close completely.  Dr.Cassie was kind enough to sneak us in as I was thinking that we would have to take B into Emerge since he was working harder.  We were in the waiting room and oddly enough, in walked Kelli and Mia.  How wild is that?  I reintroduced myself and we got to chat back and forth for 20 mins or so about our Warrior Stories (the other two Mom's in the waiting room were sitting a bit pie-eyed at our swapping of 'stories').  Sometimes life just steps up and surprises me with the funniest of things.
 
Back to the B and his lungs...
 
We are in 'wait' mode for the night (although he's already woken four times in the hour and a half he's been asleep).  Dr.Cassie was confident that his lungs sounded good and all the raspy and noise is still upper respiratory.  The question is if his vocal cords were already a bit swollen last week from his viral infection then what do they look like now with this constant retching and bile coming up?  If he's still working hard tomorrow morning (or in an hour maybe) I'll take him into ACH's Emerge and see what they want to do.
 
So for now, I wait.  And listen.  And watch.  And listen.  And then wait some more... 

From our Home to Yours...

Sunday, 12 May 2013

Happy Mother's Day, Retching and All!

"If you think my hands are full, you should see my Heart!"
Mums from T and roses from Ry
 
 
Our attempt at a 'smile' shot!
The VERY Happiest of Mother's Day everyone!  Michael asked me what I wanted for Momma's Day this year and I told him (in all seriousness) that I had everything because it was



going to be my first Mother's Day with all three boys home with us.  Of course I also then mentioned I would not be disappointed by gems, jewels or gold either!


Grandma Hurray
I just wanted to say "Thank you" to the most wonderful Moms that I could ever ask for, my Mother and my Mother-in-law (who is really a second Mom).  Thank you for repeatedly dropping your lives to come to our craziness over the mountains.  Mom, I have been re-reading and adding pictures to the earlier blogs



Grandma Jean
and when I look back I really don't know how I could have coped with it all if you were not here to hold my house together.  I love you.  Jean, I know you love big and you love hard and your grandsons are no exception (all 5 of the little turkeys).  I know you struggle with being so far away at times but these boys love you back just as hard and are always with you both.  So much love to both of you!




Sometimes it's just easier to be
our true selves!
As always, my children never disappoint when it comes to making their parents laugh (stinkers).  I had a wonderful morning of snuggles in bed and then when I realized I was in bed all alone I 'stomped' out into the hallway and announced, "Where's my gourmet breakfast in bed??"  The boys jumped off the couch (must not have been a great show to get immediate attention from them) and T pushed me back into my room, closing the door behind me and told me to "stay put".  A few rattles and rumbles from my kitchen and I peeked out the door to yell down the hall, "I don't smell bacon!  OR sausage!". 

Self portrait
Need I say more?
T came back down the hall and pushed me back into the room again.  Rylan, my angelic boy, came in a few minutes later with a bowl high over his head and 'presented' me with my breakfast....an empty bowl but to his credit he did throw in a spoon!  Sigh, wizenhimer!!  I kicked him out and Torin told me to just stay in my room.  I decided to check my email and after awhile Mike came in and I said that he might want to check on his two oldest boys since they were awfully quiet.  He came back a few minutes later busting a gut and signalled for me to come out and follow him.  Out we go, past the kitchen and into the dining room where my two boys are sitting at the table STUFFING THEIR FACES with Corn Pops
(the 'saturday' cereal) and watching TV!!!  I guess while the were thinking of a stellar idea to feed their Momma they realized they were hungry!  When I commented (loudly) on this I said, "Sheesh, I didn't even get one stinking Corn Pop!".  Rylan (did I mention he's my smartass?) brought me his bowl with one Corn Pop left in the bottom and said, "Here ya go Mom!".  My lovely, thoughtful, (but funny as hell) children.  The oh so funny thing is that when I got around to making myself a smoothie 1/2 hr later everyone else wanted some of Mom's 'good breakfast'.


Daddy lovin'
Now the not-so-funny part is Mr.B.  It's taken me over four hours to get this far in the blog because he's retching so frequently now.  He's retching laying down and sitting up, full tummy and empty tummy.  He's now at the point to where he is vomiting up small amounts and then it kicks in his gag reflex (severe oral aversion) and it just makes it all that much worse.  I feel so badly for him because it is hard to breath when he is retching (think of the worst time you've been sick and you've thrown up so much that all you can do is retch, nice, I know).  I know many of you reading this are probably thinking, "Good grief, take him in already!".  But I am so very torn about whether or not to take him in for admittance for good reason.  I'm really struggling with it this time because he is so happy and himself when he's not retching.  I'm also struggling so hard because he's older now, he will know exactly the minute I get there and the moment I leave his hospital room.  My life just doesn't have the leeway to allow me to be there with him 24/7 with two other children that need structure and their Momma as well.  It all but rips me apart when I think about having to leave him there now (not that he won't be in good hands).  On the flip side of that I'm also not too sure how I will cope tomorrow all alone in the house for 10hrs while Mike is at work and B is retching so much. I can't/won't leave him alone even for a bathroom break.  As in the past, I'll find a way and we'll persevere but I am just doubting myself to what the best decision is for all of us at this point.  It is so hard to describe to those of you who don't know B how happy and carefree he really is when he's not feeling ill (and even sometimes when he is).  I guess all we can really do is go through the next 24 hrs and see what happens.  We do have the possibility of changing one of his meds to Motillium to see if we can get his stomach to empty faster but of course with all meds comes the side effects (and effectiveness on a complex kiddo like our B).  Thursday seems an incredibly long way away right now (our appt with B's surgeon Dr.Brindle) so any positivity you can afford to send our way would certainly be helpful!

From Our Home to Yours...

Saturday, 11 May 2013

In Honour of Gavin Leong and Chasing Rainbows



We just got home from our 8th successful Blood Donor Clinic!  I, unfortunately, couldn't donate again today due to low iron...so frustrating but I don't know if I'll be able to donate until I start getting some sleep (Mr.B).

I am so touched each 56 days when we go to Canadian Blood Services because they are always SO welcoming and SO happy to see us (Mr.B) back.

I am also so touched at my wonderful family and friends that troop down there with us, tirelessly, and give a piece of themselves in honour of our son.  I hear so many times from people when I tell them how we run blood clinics every 56 days to honour the life saving blood that B received (35 transfusions in his first 10 weeks of life, 37 transfusions total), that they 'have been meaning to'.  Well people, GET OFF YOUR BUTTS!  Blood is in constant need in this country (as it is worldwide) and there will come a day (if not already) where someone you know and love will need a transfusion to possibly save their lives.  It only takes an hour total and you are quite possibly saving someone's life.  Think about that for a moment if you will, ONE HOUR of your time is EQUAL to someone's LIFE. (Okay, I'll get off my soapbox!)

Mr.B's handsome Daddy donating for Gavin
We did something different today as well, we donated today to honour another little boy who so tragically lost his life last month.  Today we donated in honour of Gavin Leong (Kate's blog link).  No I never had the pleasure of meeting this little boy but I do follow his Mom's blog and their story has always touched me deeply.  I introduced many of you to their story on our Facebook page and I know there are some of you following it now and giving your support to their grieving family, THANK YOU!  Gavin's story is similar to B's in the sense that he had an incredibly long road of hospitalizations and specialists shaking their heads (mostly in a good way) to the why's and how's of these boys.  Like B, Gavin also had an undiagnosed underlying genetic syndrome and also like B, had cerebral palsy (among other similarities).  Kate (Gavin's Momma) has asked that people continue on honouring Gavin and his memory by completing good deeds and selfless tasks in his honour (click the link to her FB page).  It was our pleasure today to donate in honour of sweet Gavin, so many miles away but so close to our hearts.
Dana, ACH Volunteer Extraordinaire and Friend

Gorgeous Jenn-a-belle, Friend Extraordinaire

Kelsey-kins (and baby Araya hiding behind B), Special Needs
Asst/Aide Extraordinaire and Friend
Tania Teacher Extraordinaire and Friend

Like I said, get off those butts people!  If you can't give blood, go out and perform and act of kindness, just because!  We can all make the world a better place! :)

From our home to yours.