Thursday, 28 June 2012

Time To Party!

Party Time, just in time for B's 8th month Birthday!  We are having our welcome home party for Mr.B on July 7th from 1-5pm at the Highwood Community Centre.  It is an Open House so please feel free to drop by anytime to say 'hello' and grab a snack!  If you'd like to join us and want the full details, then please email me at and I'll happily add you to our RSVP list.

I would also like to extend an invite to those of you reading the blog around the globe!  We are collecting cards/post cards from people that are supporting us around the world to put into a book for Braeden to see when he is older.  If you would like to join us in that, and can take the time to send us a post card or card of where you are from that would be great! (Local and Canadian Friends certainly are welcome too!)  Mail can be sent to :
Lia Lousier (Braeden Lousier-Hicks)
5628-4 St NW
PO Box 64174 Thorncliffe PO
Calgary, AB
T2K 6J1

We are now into our third week home with B and I would like to say things are getting easier, and they are to a certain extent but they are still difficult without a doubt.  I got my butt handed to me last week when my own body finally gave into the pneumonia and I crashed, hard.  I was treated for pneumonia three weeks ago with steroids and antibiotics and was feeling somewhat better from that when I got kicked sideways.  I ended up taking Mr.B into emergency early last week because he was having a difficult time breathing and he was coughing quite a bit.  I called the Homecare Nurse and she agreed with me to take him into Emerg just to be safe.  I got all three boys up and out of the house and by the time I got them all into the Van I was feeling pretty rough.  We got into Emerg right away (I think they took one look at his file and just pushed us through) and when we got into the room for assessment the Nurse assessed B THEN assessed ME!  How embarassing, I was so very sick all of a sudden, high fever, nausea and exhaustion.  Not so great when you've got three kids in your care.  Mike wasn't able to get away at all either so it was just me.  The Nurse actually gave me Tylenol (big kid drugs, no grape for me) and antinausea drugs so I could at least function.  I was having trouble breathing as well but was more concerned for B of course. 

They did a blood panel on him, a chest xray and kept him under observation.  His breathing was actually looking pretty good (of course) and he was still sating at 94% when we got there, so not too bad.  I had turned up his oxygen before we went into the hospital and that seemed to help.  They turned him back down after a few hours and he was able to maintain his levels which was great.  All in all, there was no visible infection (thank goodness) and they sent us home.  I wasn't sure if they would send us home with me being so sick but they still did.

So off to home we went (thank-you to the Tylenol I was able to function enough to load kids and drive).  Got Torin settled back in at home as he was just on his antibiotics for his Tonsillitis AND sinus/eye infection and feeling rotten, got Ry in front of the TV and B into bed in time for Mike to come home from work.  Mike walked in the door and I crawled out to go to the walk-in clinic.  I'm pretty sure I shouldn't have been driving at this point but I needed to go and it was just down the street.  I got in as the last patient of the day (thank you, thank you lovely unit clerk lady!) and the Dr took one look at me and said, 'that's not good'.  Is that your clinical diagnosis??  I wasn't able to move much air in my chest by that point so he put me on the nebulizer for 20mins to try to get some air flow and gave me not one but two antibiotics since I was harbouring an UTI as well (wha??).  He suggested going to the Emerg myself but I just didn't have it in me to get there and I was terrified that they would admit me and then what?  Mike would be stuck with sick kids and no family here to help out.  Trust me when I say Braeden is a full-time job in himself right now!  I trugded home to go to bed and Mike took one look at me and laughed.  He said he couldn't figure out what colour my skin was supposed to be, I decided on grey.  I fell into bed and I knew that I was certainly ill when Mike offered to stay home from work the next day (I must have looked truly awful for that to happen!!).  It was very sweet of him since I felt so terrible but by noon he was in bed beside me with a fever of 102.  Yup.

Mike's trip to the Dr. reveled strep throat for him, tonsillitis, sinus/eye infection for T and pneumonia for me...can I get a break here people??  AMAZINGLY neither Ry nor B got sick!  Ry got a bit of a runny nose but that was it!  Torin missed an entired week of school however so that was not good.  Mike and I spent the week trading off trying to keep the kids fed and clothed while we moaned and groaned our way through our illnesses.  Mike tried on more than one occasion to get me to go into hospital but I just knew they would admit me and that was just too stressful to consider so I suffered through and just kept going back into the walk-in Dr for the nebulizer, antibiotics, oral steroids, inhaled steroids and pats on the back.  We made it through but I am still absolutely exhausted without a doubt!

I had my real test of strength on Monday this week when Michael was gone for the entire day/evening.  Mr.B had a good day but refused to nap for longer than 20 mins at a stretch for 15 hours straight!  I would take 20 mins to get him to sleep and then he'd be awake 20 mins later, so frustrating!  I got no sleep the night before and was a walking zombie who just wanted a nap but I would get him to sleep, lay down and he'd be awake.  By the end of the day (thank goodness T and Ry went to bed somewhat easily) and after taking over 2 1/2 hours to get him to sleep (with me crying for the last two hours straight) I got to go to bed only to lay there wide awake with stress!  It was a day of reckoning that is for sure and I was pretty convinced that I was certainly NOT cut out for this job!  Any confidence I had gained in the previous week was completely shot in that 15 hour period!  Now of course the next day Mr.B napped well and all was well once again, Murphy's Law.  I was taken to task and certainly felt as though I had failed miserably.  I know that 90% of it was simple exhaustion but like I said earlier, Mr.B is himself a full-time job.

We've been having issues with reflux again as well, rather I should say we are having issues with retching after his feeds.  I can vent his tube for 15-20mins before a feed, feed him and within 1/2 hour he is retching horribly and needs to have 1/2 of his feed taken out (via venting) and vented for gas and then feed put back in.  It is to the point that I am now planning my day around the need for B to be vented which is not easy.  Vent for 10-20 mins, run a feed over 45 mins, wait 1/2 hr, vent again for 10-20 mins...repeat every three hours from the start time...not easy to do much else.  The Homecare Nurses were out today though and he's gained weight well this week (on the high side) compared to not really gaining at all last week.  It may be a question of changing formula (although he's been on this one for months now) or reintroducing his refulx meds.  It is scary watching him retch as he turns a nice shade of purple and you know it must hurt!  Nothing like trying to vent a tube, not spill any or have it come lose while trying to prop up your kid so they can continue to breathe...

I don't dare say life can't get much harder but I am slowly getting a better reaction time down I think.  I am faster to grab the tube to vent or confident to treat the granular tissue (remember those chemical burns) on my own.  Although with days like today when we've had two issues of feeding tube leakagage by 10 am and a pile of brand new laundry to do, not to mention a cat off to the vet with three kids in tow and a cat with a now empty bladder into his carry cage...the work is never done, but I don't know why that would be a surprise because a Mom doesn't get any time off, ever.  Things they DON'T mention in "What to Expect When You Are Expecting"!!!

On a high note?  Mr.B's laughs are so contagious, he can have us all in tears in a matter of seconds!  He enjoys life and everything about it (a lesson to learn here?) and he simply adores his brothers and being adored.  Life might be difficult but it is also beautiful and we simply have been given the biggest gift one could have been given, the light of our lives, our sweet and radiant Mr.B.

Friday, 15 June 2012

It's Certainly Not All Roses

It's hard to believe that I am at post 100!

I think Mike summed it up last night when he stated that having Mr.B home is actually MORE stressful!  Not a big surprise I suppose, it is pretty overwhelming having to take on the roles of Nurse, Dr and Therapists as well as Mommy.

In all reality the week hasn't gone all that badly, I've gotten Ry to school on time and even remembered to pick him up all three days (although he is home with all of us today due to the fact that I didn't think I should legally drive after my no-sleep night last night!).  I spent every hour, at least once an hour, up with at least one of my children.  Torin is still terribly sick and I can't seem to get his fever to drop under 103.  Would normally take him to a walk in but the thought of exposing B to all the germs at a walk in makes my skin crawl.  With the pain he's having upon swallowing  makes me fear we are back to Strep once again...lord love a duck.  Mr.B's been running a low grade fever but is still on his antibiotics for his last UTI at least so he has a bit more resistance but we are back to green slime poop again today....frick.

It is a lot of pressure to have to figure out what is going on when Braeden is screaming, it's not quite like a 'typical child', oh, he's just gassy/fussy/tired/hungry/etc.  B really only has tears when he is in pain and so it is very nerve wracking when he screams for 1/2 hr with tears running down his face.  Turns out that if the first time you vent him you don't get succeed then try, try again!  Gas pains would hurt a great deal when you can't burp or spit up.  It's great having the option to vent him through his g-tube but he needs to be moved around constantly to force the air out (perhaps my Nurse friends could tell me an easier way??) which makes him scream harder.  It seems switching over to the powdered version of the same formula upon coming home is making him waaaay gassier.  Of course the powdered version is waaay cheaper than the concentrated...of course.

Mike got a bit of a shock yesterday when he had to help me 'treat' (ie: burn the hell out of him) his granular tissue.  I was only about 1/2 way through when Michael told me that was enough.  Not fun having to cause your child the pain of a chemical burn while holding them down so they don't move and thus letting you burn the 'wrong' skin.  I don't know what Mike was expecting but it certainly wasn't that although the positve is that I got through it without vomiting!

I'm also pretty certain that the look I got when B woke from his nap yesterday was, "You again??".  He is finally waking up happy at least, he wasn't too impressed for the first 48 hrs waking up in his 'new' crib.  I think he is wondering where all of his girlfriends have gone!  On a positive he had his first bath here at home last night and was very impressed by that discovery!

The boys are loving being all together and it is so very sweet to watch big brother T read Mr.B stories in the mornings or having big brother Ry tickle B to make him laugh.  All in all it is SO much better at home but it is also SO much more stressful.  The good and the bad?  I guess, but I'd still chose to have him home over not.

On the crappiest of notes, it was a sad, nausea inducing day yesterday when the guys cleaning out my neighbours yard made the grisley discovery of what we can only assume are Sasha's remains (the cat we lost a month ago with the assumption of Coyote involvement).  It is nice (?) to have the closure but I also don't have the ability to let go and lose my shit with three boys at home with me.  Add it to the pile, thanks!

So to any of your planning on visiting anytime soon, my house will inevitably be a mess and my kids will be eating plain pasta for a bit because the thought of fitting in groceries seems to be too much right now.  Just go with it because my motto right now is 'let it go!' compliments of the Homecare Nurse Luci.  When she found out I was still pumping after 32 weeks she told me that "Sometimes you just need to let things go".  It wasn't just that occurance that has made me stop pumping, I had already decided to stop due to the fact that there is no time to fit it in with B home and really, he's still not ready and I'm done with it all.  Gold star to me (yup, I said it) for sticking with it for so damn long.

My positive thoughts for the day are completely with my sister who is on her journey of discovery today and my biggest hope in life right now is that they discover NOTHING more.  Please take all of those positive thoughts you normally pass on our way and send them instead to her, give her the strength to pull herself through this with the grace that she's had thus far.  I don't know how many times she's told me over the past few months that we should live closer. She's right, we should because you can be damn sure I'd be holding her hand today if I could.  Love across those mountains to all of my sisters, I love and miss you all terribly.

Wednesday, 13 June 2012

D is for Discharged!

Day 220 and it is officially our first day at HOME!  Mr.B's official discharge happened in the late afternoon yesterday so I am now going it solo with my nursing degree (not)...yikes.  We were blessed with an impromptu (?) party for B with a beautiful sign signed by the staff, a balloon and some great gifts.  It was an emotional day yesterday that's for sure, well an emotional week actually.  It was interesting trying to explain to Rylan, who was with me on the final drive from the hospital, why Mommy was crying when she was so happy.  I'm certain the kid just thinks I'm nuts!  Of course we walked in the door to find Torin in the couch with a fever of just never ends. 

Our first full day at home today and Torin spent the day throwing up non-stop!  B has been having issues with retching in the mornings as well and it is horrible to watch him retch and retch and be unable to throw up (do to his fundo procedure).  I am venting his g-tube but I think it is the change from concentrated formula to powdered that is doing it.  Why would I think that we could go with the cheaper option of the powder??

It was a bitter sweet day yesterday as well due to B's Audiology testing, he has nerve damage in both ears and needs hearing aides.  I just felt so disappointed that we have yet another thing to add to the list.  It can't be surgically corrected, he'll need the hearing aides for life.  The hearing loss falls into the 'moderate' range so he can in fact hear a lot of things but for speech development he won't hear 'soft sounds' like esses or follow a 'normal tone' conversation.  The good thing is that he can get them now and hopefully get comfortable with them while he's young.  I'm not sure how they will go over, it's not like he keeps his nasal prongs in and he needs those to survive!  I'm not disappointed because of the hearing aides themselves, that's neither here nor there, I just can't believe that there is yet another issue/defect.  I am thinking that maybe it is in fact CHARGE Syndrome afterall.  The main characteristics are visual (his coloboma) and auditory issues/defects.  It does say that, "One of the hidden features of CHARGE syndrome is the determination and strong character these children display."  I'll agree to that!  Oh the complexities of Mr.B.  I am looking at all the costs of his equipment thus far and am very glad we have extended medical but am sure I'll have a fight on my hands to get them to cover all of it as well as the oxygen costs.  The bills are adding up that's for darn sure!

We also got outfitted with oxygen in the house yesterday.  We now have a converter and 50 feet of tubing so I can walk around the whole upper floor without hauling a tank with me which is great.  The nice thing about the converter as well is that I can get some moisture through it as well so his nares don't dry out.  Of course he spends more time these days chewing on his prongs than having them in his nose...

To say I'm feeling overwhelmed is an understatement!  It is a lot of responsibility to have a child with as many needs as B has, not to mention two other children (and a second one with special needs).  I know that it is a matter of finding a routine that works for us and I also know that early intervention is the key to Braeden's ongoing success, I'm just so damn tired!  Braeden is sleeping through the night, kinda.  By kinda I mean he wakes screaming and then settles back into his sleep while I am on overdrive because my heart is pounding and can't go back to sleep.  I do have to say that I am extremely proud of the fact that I got the boys to school on time both yesterday AND today even with a 'blow out' before leaving the house yesterday and B's retching today.

I did get to have a visit from both the RT and Homecare Nurse into the home today and they were able to put my mind at ease a bit at least.  It is not like I don't have support, it is just that I've gotta do it all myself now!  I can't pawn off the g-tube cleaning (and thus sending B into a pain induced fit) off to the nurses anymore.

Through all the complaining it is amazing and indescribable to have him home, just unfortunately not any less stressful...just different stress.  I did get to achieve my one want in life these days, to lay down with B beside me and just lay there and love him...sweet surrender!

Monday, 11 June 2012

Home Is Where My Heart Is

Life can't be more perfect than at this moment in time as I type this Mr.B is sitting in his bouncy chair beside me on the floor.  Yes, he is home, not discharged just yet, but HOME.  We had an amazing weekend with our little B coming home to where he belongs.  We got to pick him up on Friday night and keep him till Sunday evening.  It is amazing how much care one little dude needs in 48 hrs (aside from the basics I mean).  I also got to re-experience the 'have baby no sleep-itis'!  Mr. B is able to go for 7 hrs without a feed in the night but will randomly wake screaming and go back to sleep...not good for my heart let me tell you!!

Torin and Rylan had a wonderful weekend as well and I think my favourite part (although there were many), was just having all three boys in the same room.  Such J-O-Y!  We had to take B back on Sunday night to do his oxsymmetry test (take him off oxygen, wait for the desat and then put him back on), voila, he failed.  And by failed I mean he needs oxygen (der) and he can now come home on it.  We are back into hospital tomorrow morning again to wrap up lose ends, get all the prescriptions in place and have an Audiology test completed.  We should be fully discharged by 3pm!!!

We will be leaving the hospital behind us (fingers crossed) after 31 weeks, or 219 days.  To say I am feeling a bit emotional would be an understatement.  So much has occurred in the past 7 months and we are all inexplicably changed (mostly for the better I think).  I was a bit of a wreck today just knowing that I've got to say more 'see ya soon(s)', so many of the nurses have been with us from the beginning of Unit 2 and they feel strongly about Mr.B leaving their nest as well.  I got a wonderful letter from Breanna, his first nurse on Unit 2 and if I wasn't already prone to tears then I certainly was then!  It's also bitter sweet knowing that we are leaving some patients and their family's behind, we are some of the lucky ones, we get to go home.  There will be more tears tomorrow for certain but they are all tears of joy.

Life is still precarious, he does still have a very long road ahead of him, a clot in the liver, overcoming the strokes, trying to grow and finally get a diagnosis that makes some sense of all of this.  For now he is home, I can lay on my bed, curl my body around my child and truly just love him.  Each day is still precious and good and I'm happy for each one he gives us.

Michael came into the kitchen tonight and declared that we have three kids, three!  Yup, finally it is sinking in, we are finally a complete family of five all under the same roof, all ready to drive each other crazy!

I can now actually say I am on a timeline, Mr.B has decided he is ready for a bum change and bed...guess that's my cue! :)

Thursday, 7 June 2012

It's Always Something

My super smart friend Jen H. just posted on FB that 'It's always something', and she's right it is ALWAYS something hence why I am a bit of a wreck today.

We had to say our final good-bye to our cat of 17yrs, Bailey last night.  How can you ever really say good-bye or decide on when it should be after that many years (not that it is easy after any amount)?  We've now lost two of our three cats in a month and the kids are in a bit of a shock over it (no surprise).  Torin's first question was if we could go to the pet store tomorrow.  These boys are going to be either in for a great deal of therapy or really well adjusted kids...not sure which just yet.  Our final cat, Oliver is in a bit of a shock himself, I can only imagine what he must be thinking after being with 'the girls' for the past 13 yrs.  He in a bit of a panic and I can't say as I blame him.

Speaking of good-byes, it hit me today when Rebecca (SLP) and I were talking that I have a great number of good-byes to say over the next week.  It really hit, we are going to bring him home and I can't bring home all of his Volunteers, Nurses, Dr's and Therapists home with us!  I am hoping that our paths will cross again (maybe in the aisles of Costco!) so I am hoping to just say a lot of 'see ya laters'.  We have been so very blessed with all of the care and attention from everyone that I find it heart breaking to say Adios!  It is going to be a very tearful exit of that I am sure (as it certainly has already started).

It would seem that Braeden and Klebsiella have met yet again (that wonderful bacteria that caused his Sepsis).  He is recovering nicely from another UTI (urinary tract infection) and now has to be on 6mths of prophylactic dosing of antibiotics (once this latest course is done) to prevent further UTI's and possible kidney issues.  Just add it to my 'to do list' and we're good.  He was in a much better mood today when I arrived and it was so nice to see his gummy smiles at me this morning again.  He still has his IV in but it will be out today (probably already) now that the blood work has come back clear.  I guess the good (?) news is now I know what to do when he gets sick next (?) time.  I know that diarrhea means a UTI for this boy, not sure how that works but that is how it has presented all the times he's had them.

The GRAND Plan (yes, universe be damned I will share it with you) is to bring him home overnight tomorrow night and Saturday night, return him (for a refund?) on Sunday so that they can do the appropriate oxygenation tests Sunday night while he is asleep then he is allllll ours on Monday or Tuesday.  That is the 'Plan' today at least, I am very willing and able to change and adapt to whatever Mr. B dictates for me next!!  Now that we've had our 'dry run' from last Sunday I feel a bit more prepared on what to expect at least. 

The hall is booked, the date is set and the party is going to happen in one month on B's 8th month Birthday.  I figure that we are certainly overdue for a party and some laughter in our lives!  All we need is Mr.B home and our family of five will finally be complete. 

Our 'normal' may not and certainly will not, look like anyone else's but it will be all ours!

Monday, 4 June 2012

From Home Into Isolation

I'm not sure where to start in this post as my emotions runnith over and not in a good way.  In fact I seriously considered throwing my phone through my plate glass window tonight after getting off the phone with my sister Monique (more on this in a later post as I need to process first).

It was quite a weekend, B was supposed to come home for an overnight Friday night but I had been feeling a bit off for a few days so I postponed it to Saturday night.  I woke up Friday with a heaviness in my chest and I figured it was allergies since they'd been bugging me earlier in the week but it got a bit worse as the day went on to the point that I asked the Paediatrician to listen to my lungs with her tiny stethoscope (funny right?).  She said I was a bit wheezy but was otherwise seemed okay.  As Friday wore on it got harder and harder to breathe and by 8pm I knew I needed to go into the walk-in clinic because it felt as though someone was pushing on my chest and back and squeezing me tight.  The Dr took one listen and said it was Pneumonia, no doubt with the amount of blockage in my lungs.  So here I am on oral steroid, antibiotics, inhaler steroids and ventolin.  The sad part?  I had just finished a course of antibiotics from when the boys had Scarlett Fever so that I DIDN'T get that.

I had to be on the antibiotics for 24 hrs before seeing Mr.B again so that put us back another day.  I was also terrified that I'd passed it onto him, that's what I get for assuming it was allergies.  In my defence though I wasn't coughing really and just felt run down, no huge surprise there.  So I stayed away from the hospital and Braeden had one of his favourite nurses with him, Deb, so he was set for my absence.  Word got around that I was sick so he got inundated with visitors as usual.  Deb was laughing on Saturday morning at the shift change because she was tripping over nurses that were coming in for their morning smiles and love from Mr. B.

The big plan today was to bring him home this afternoon (Sun) for the first time and see how I was feeling to whether or not we'd keep him overnight.  So the boys and I trooped over to the hospital to pick him up and they were SO excited that they got to bring him home.  We got there and Braeden was all smiles and happy to see us and then just out of nowhere started retching and retching.  The poor boy!  His nurse Deb had had a great morning/afternoon with him with no issues and then I arrive and BAM, here we go!  Nora (afternoon nurse) had to suction him out and then we vented his G-Tube as he'd just finished eating and we thought maybe he was just really gassy.  He all but pushed back out his whole feed into the vent syringe but did seem better after that.  He also had to have his G-Tube treated again today for prolapse (granulated tissue) so I got out the silver nitrate sticks and did my first treatment.  Now for those of you that don't know what silver nitrate is, it is caustic to the skin for one thing and can give you one hell of a chemical burn.  It is designed to do just that, I had to burn his granulated tissue.  Deb chastised me for saying I had to burn him, she said I need to be more positive and say I had to 'treat him' but really, I had to burn him (sorry Deb).  It actually went not too badly aside from the fact that I felt as though I might vomit throughout it.  Nothing like chemically cauterizing your child's wound!  In all reality, as horrible as it was for me, B is such a trooper that he really didn't hate me for it and I'm one step closer to that medical degree.

If you're not already a bit queasy this really might put you over the edge.  So, retching, burning and then the poop.  He had a huge diaper and Nora and I figured that that was the problem with the retching, his tummy was very full as was his need to poop.  So the feed went back in, he retched once again but only the one time then was settled.  They asked if I wanted the resident to look at him but I figured we were good, he was happy so really what else could it be?

Homeward bound we went with our van full (take a normal diaper bag, times it by 10 and then add three tanks of oxygen) and B enjoyed the car ride with his brothers talking to him and cooing at him.  Torin's best quote in the car was, "yep, we're your brothers Braeden, we are your brothers".  We got home and quickly changed another poopy diaper, and another and another and another.  Poor Mr.B had it coming out of him faster than it was going in.  I phone the Nora back at the hospital to say that he had diarrhea and she told me to keep her informed and to flush his G-Tube with more water so that he was getting additional fluids.  By the fifth diaper change and third sleeper I figured it was time to take him back.  The crazy part was that he was in a great mood for the most part, aside from being tired as his nap in his new crib was short lived as I forgot I had to give him his heart med and had to wake him.  What I wasn't anticipating was the boys to be crushed.  They were both in tears when I was leaving with Braeden to take him back, those poor boys have been through so much. 

I hauled all the gear back to the hospital including all three tanks of oxygen and got him back to his bed.  His nurse weighed the bag-o-diapers I brought (yup, each one saved in a ziplock).  For the amount of fluid he lost he wasn't complaining.  He was happy to watch his mobile and happy to be back where he knew, not to mention he got a parade of nurses through to welcome him back (don't know what they are going to do when he leaves for good!).  The resident came into have a look at him just as I was taking off another soiled sleeper and changing diaper number 6 in four hours.  Lucky (?) for the resident he got to have a good look at the poop and they sent off some samples to the lab.  He started B on pedialite and commented that he wasn't all that well profused but wanted to see if they could get the pediatlite to work before going to an IV.  I have a sneaking suspicion that the IV will be in before the night is out.  So BACK on isolation he is as we wait to see what bug is travelling through him this time. 

It's all a bit ridiculous this life of mine, I couldn't make this up if I tried.