Happy Due Date Birthday Mr.B

We had to say good-bye once again to Grandma Hurray

T kicking Daddy's butt at the Rotary Flames House Christmas Party!

Nose-scrunchers!!  I LOVE this picture!

I know it's been too long between posts when I'm wide awake at 3 am.  I've been trying to get to writing for the past two weeks but life is just seemingly in the way (darn it all).  In all reality, I've been trying to take care of myself and the rest of the household and going to bed instead of staying up to write.  It is B's 'due date' Birthday today (as is mine) and I've been playing through different scenarios in my head about how life might look if he'd made it to his 40 weeks of gestation.  I was hoping that he would not have to be a Christmas baby (as I grew up being one with my Birthday only 5 days after) but I never in my wildest dreams thought we'd be desperately trying to keep him in to be a November baby instead of an October baby!

Mr.B did get discharged on the 14th (with a leaky g-tube) to only be back into Emerge on the 18th with severe pain around his g-tube.  I had tried to get into see Dr.B but she was in surgery all day.  Her (amazing) staff did see us in the clinic and Lana couldn't figure out the 'pain' either, just that for the amount of pain he was having didn't make sense with how it was appearing externally.  It was only an Emerge visit (no admittance) and in reality, they could find nothing wrong (and we were going to see Dr.B the next day).

Enjoying (?) the big boys Christmas Concert!

Off to see Dr.Brindle the next day and same thing, no outward signs on why B would be so uncomfortable.  We had an ultrasound of the area before we went up to see Dr.B, which was reassuring.  I was worried initially that the tube was too short (length from the stomach to the outside) but no, that was fine.  I even was able to distract B enough that Dr.B got right in close to the g-tube and there was no real 'flinching'...so what is it??  The ultrasound looked good and the 'outside' looks good.  We still don't know but he's still rubbing at it and at times seemingly in a great deal of pain with it.  Frustration!  Dr.Cassie did recommend trying him on Naproxen (as I was giving him Advil every 6 hrs to keep him comfortable) and that actually is helping somewhat.  Being as it is an anti-inflammatory I think that that is somewhat 'telling' that there is something going on with it.  The tube itself is great though, easy to use and it's certainly nice to be back to a 'button'.

B's 'Tiny Superheros' Cape arrived right before Christmas but he
was feeling so awful that I've not gotten a great shot of it yet..

Back home we went and just tried to lay low for a few days and let the tube just 'be'.  I do find that if I bathe him twice a day that the tube is a bit less irritating to him.  I am really thinking that it is all due to the trauma he suffered to the stoma (tract into stomach) and the fact that some food (gastric juices) are leaking and therefore it burns and gets swollen inside.  All a guess on my part but it makes some sense.

Being a stinker butt!

Hanging in his awesome jammies (thanks Gina!)

The not-so-fun part of the past two weeks is that B started up with a bad cough on the 20th.  He just started coughing that day and it was a dry hacking cough.  Being as we've all been sick in this house it really wasn't a huge surprise but a bummer nonetheless.  I had the grandiose plan to try my very best to weather through it at home.  I have a stethoscope (because of B's heart/lung conditions) so I was listening to his lungs a couple of times a day to make sure they weren't 'crackling' or 'popping' (signs of pneumonia).  What I was worried about (well one of the things) was that B's lungs can also sound 'okay' and he can be really sick.

I watched over him like a hawk, watching his chest for any signs of respiratory distress.  The cough worsened each day and B's energy dropped quickly.  I packed my bags on the 23rd, ready to take him in.  It is all a dance in a way, when to take him in and when to try to keep him at home.  If it was a year ago, I would have taken him in at the first real signs of the cough progressing (and fever) but I know his lungs are strong now, I know he can fight through illnesses (and I'm certainly more confident in my 'nursing' abilities with him!). I had the bags packed but he perked up a bit when Dad got home so we decided to wait it out through the night. 

Again on the 24th, I was ready to go but I just so wanted B home for Christmas (I would have taken him in in a heartbeat if I didn't think I could handle it or if I thought he was in great respiratory distress).  This was B's third Christmas and I selfishly wanted him to have it be his first Christmas at home with all of us.  I was so torn because he'd cough and hack and then be playful for a bit convincing me that he was still doing alright.  My in-laws arrived after midnight and Christmas was officially started.

All snug in their beds (kinda) Christmas Eve

Mr.B had a rough night (no surprise) and slept through most of the big boys opening their gifts.  There was no way I was going to postpone the Christmas morning (since the boys aren't allowed up before 7 am as it is) OR wake B up necessarily.  It was still a comfort to know he was home with us nonetheless.  I knew that since it would be day 5 of his 'illness' that he'd either be on the road to getting better or he'd be going downhill fast.

The big boys were thrilled that Grandma and Pappa had joined us for Christmas and surprised them this year (they didn't know they were arriving).  We had a lovely time watching them open their gifts!  Mr.B woke up absolutely miserable wanting Momma and nothing else.  He clung to me most of the day and just got seemingly worse as the day went on.  His inhalers were no longer giving him any real relief and his wheezing just got progressively worse and he wasn't able to handle much of his feeds.  I had to suck it up and realize that my 'dream' of Christmas at home just wasn't meant to happen this year (BUT we did make it longer at home this year Christmas day then we did last year!).  Mike and I took him into Emerge and they took him back right away.  I knew his breathing had worsened through the day and I knew he was most likely going to need some oxygen support.

So much fun to just sit and watch them

Amazingly he was still able to hold his own (sats of 95%) when we got there even though he was very audibly wheezing.  I had to laugh because the Emerge Dr (who we'd not met before) said, "kids that sound awful like this generally have an x-ray that actually looks not too bad".  She left and I told Mike that B's generally the opposite of that, he usually looks and sounds good but the x-rays are awful.  Sure to form, B's x-ray was not good.  As our stay grew longer he started to have more and more de-sats (oxygenation drops below 90%) and the blow-by oxygen just wasn't cutting it anymore.  Onto the dreaded nasal prongs it was and Mr.B was so not impressed.  He did troop through it though, in true B fashion.  Unfortunately each time B drifted off he'd go into a de-sat again and the O2 would be turned up a bit more.  The thought was that we were either looking at RSV or viral pneumonia (with bronchialitis).  I kept telling myself that he is so much stronger then he was a year ago when we ended up with a 10 day stay on ventilator in the PICU due to bronchialitis (with a month long stay in total).

Pappa snuggles as Momma got ready for the trip to ACH

The frustrating part is that we knew he would be admitted but the Emerge Dr didn't want to approve the admission until she found out if he could 'eat' or not.  I had to run a feed for him and see if he would tolerate it (mostly).  The Dr didn't want to send him upstairs if he'd just need an IV, so I get that, but it was a long and (to me) unnecessary hold up. We didn't get upstairs until almost 5 am and then once you get upstairs you have to go through a whole bunch of admission stuff before you can even dream of sleep.  We also found out that (once again) there was no room for us on Unit 2 or on the Purple Team.  Instead we were introduce to Unit 3 for the first time which (as you can guess) came with a whole lot more stress.  It is very difficult to convey to people who Braeden is (when he is well) and to highlight only the necessary parts (that have to do with the admission) without leaving out too much of his life story so that they clearly understand him.  There is no possible way to explain a complex child like Mr.B (especially after no sleep and spending the night in Emerge) to a brand new set of Nurses, it's very stressful.

My wee sick little Love

I forced myself to leave with Michael (at 7 am) to go home and get a few hours of sleep because I knew if I stayed that I wouldn't get any sleep with people coming in and out of the room.  When we left, B was on 3 litres of oxygen (which is a lot when you generally don't need any) and really struggling to catch his breath.  Less then 24 hrs later B was without any oxygen and perking up a bit, even gave me some smiles.  This super kid!

I wonder what's in this??

Might as well bring some Christmas to him

I expressed to the evening Nurse that I would be interested in taking him home the following day if he was able to maintain his oxygen at night while asleep.  She was concerned due to the fact that he wasn't on him home routine of feeding but I assured her that his feeds were the least of my worries.  I would be happy to run his feeds how he dictated that he needed them if I could take him home.  The less time we needed to spend around all of the 'germs' of the hospital the better!  

Looking and feeling a bit more 'B' like

When I got into ACH the next morning B was still off the oxygen and after the many rounds of ventolin/steroid and nebulizers he was breathing well enough.  I was confident that I could handle the rest at home and requested the Dr be paged so that I could spring him.  Thankfully Dr.Wong was on the Blue Team (the one we were put on) and she knows myself and B somewhat.  She was fine with me taking him home after we chatted a bit.  She agreed that home would be better if I thought I could handle it and that I promised to bring him right back if not or if things went south again.  Yay!  What I was sure would be at least a week long stay when we went into Emerge was less then three full days...SuperStar Mr.B!!

Life is better at home with Daddy

I can honestly say it's not been an easy few days at home, it never is with a sick kid, let alone a sick B.  He's still been coughing hard and there's been the non-stop snot flow (you're welcome) and the diarrhea to contend with.  I don't regret bringing him home though (even through my severe sleep deprivation) because he gets to spend more time with his Grandparents this way and I get to be with him 24/7 which is just not humanly possible when he's in hospital.

So was it the Christmas I'd imagined, no (although I had of course run through the scenario of him possibly being admitted in my head) it sure wasn't but it was still good.  Really, what it comes down to is that Christmas is only one day and it can happen on any day you really want it to (for Braeden).  He's been slowly opening a few presents over the past few days and he'll open a few more until he's done on his own time, at his own pace.  Life with B is never predictable and never will be.  Next year he'll be that much older, that much stronger and who knows?  Maybe his fourth Christmas will be the one where we all get to spend it together!

I hope you all have had (or are having) a wonderful holiday season.  Many great wishes for each of you as we enter into 2014 in less than 48 hrs.  Have a safe and wonderful New Years!

**I am still behind a few posts for blankie stories and our 'Season of Giving Back' but bear with me, they will come soon!**

From Our HOME (yes!) To Yours...

Battered, Bruised, and Still Smiling

Hangin with some friends

It has been a very important day today not just because of Mr.B's surgery but because it's Mr.B's Daddy's Birthday.  Not just any birthday either....don don donnnn, his 40th!  Isn't this a great way to spend a big birthday with you child going into surgery??

You could generally say that I might have a bit more 'excitement' in my life then some.  Nope, no need to be jealous here, my excitement as it's hardly every good!!



Playing in my room at RFH



Sliding around on my newest Blankie (story to come)

We did get Mr.B discharged on Monday and over to the Rotary Flames House.  I was so thankful that they had space for us because Mr.B had a wonderful time over there.  He got to play and socialize.  I can't stress enough of what an amazing resource the RFH is.  We did however have to keep the stay 'under wraps' from the big boys, they would have been crushed to not have been included in the stay.  Hopefully we can spend a weekend there sooner rather then later and spend some time as a family.

 

 

The excitement in my week didn't all come from B this past week though, oddly enough.  Rylan (the 7 yr old with Scarlet Fever) lost consciousness one night while playing downstairs with his brother.  I still don't understand the whole story as I wasn't in the house at the time (and didn't even find out until 6 hrs after the fact...yes, I'm still annoyed!).  The best we can piece together is that Rylan was leaned over to reach for a clock and then just simply fell over.  He does remember falling, "I bounced twice then nothing..." but then is blank until he came to with Mike over top of him.  How very odd!!!
Mike didn't see it happen either but he was more concerned about a concussion where as when I found out I wasn't instantly asking about his resp rates, sats and heart rate, etc.  (No, I don't have a life).  Needless to say I went into Ry's room at midnight with my stethoscope in hand and proceeded to listen to his heart beat, rate and resp rates.  I was still not reassured so I spent the night awake worried about Ry.

I checked his heart again the next morning and it was still fine.  I was very happy that we had an appointment with our Pediatrician that morning.  Ironically she wasn't all that worried about the fact that Mike had found him unconscious.  She was also curious if maybe Rylie had Mono all along and not Scarlet Fever...I don't know.  We do still have the Cardiologist work-up next Wednesday and they'll do an EKG (again) and another Echocardiogram.

In the meantime the kid is fully of energy, he is fully back to his pain-in-the-butt 7 yr old self (which is a good thing)!

As I said earlier, Mr.B had a good stay at RFH so when I had to discharge him from there this morning and bring him back across the parking lot he was not too impressed with me.  He was even less impressed when we went into day surgery, he knew exactly where we were.  Smart boy.



Pre-op Toga fashion!



Waiting

We got through all of the pre-op jibber jabber and got taken to the waiting area (where everyone meets for a final hurrah) before stealing, I mean 'borrowing' your child.  Dr.B came by to see the new tube and was happy I let her open it, Christmas come early!  We never were able to get the non-balloon mini one but we did get a ballooned one that will just have to do for now.  The Eye Dr was late so we had to wait a bit for him which didn't give me a lot of time to review with him (I've not seen him in like 6 mths since he told me he would do the surgery).  B was a trouper and went right in with the Anesthetist and Momma went to take an Ativan...:)

The lovely Nurse Trish happened by while I was waiting which was great because she kept me occupied.  Soon enough Dr.B came out to say that the new tube looked great going in so fingers crossed for this one.  She told me they had about another 20 mins to go before they would call me back.  I sat and clock watched and was very surprised when I got paged to return to the Unit. 

I arrived to find B already in his room with his Nurses.  I was happy to see him but more then a little annoyed since it was conveyed to me that I could be in the recovery room to make the transition a bit smoother for B.  He was in decent enough spirits though and wasn't even needing any extra oxygen at that point (Super Star!!).



Now what have you all done to me??

I was certainly quite taken aback when I saw him though...he didn't have the procedure done the way it had been described to me (at least the way I'm sure I was told).  What I was told (by the Surgeon that did the procedure today) is that he would put a string into B's brow muscle and in to the eye lid and it would 'lift' it up.  He also went on to tell me that his eyes may not close completely anymore but that was 'typical' and kids get over it quickly.  I remember specifically asking if his eyelids would be cut and he said "No".  He explained that by doing this procedure B would have better lasting results and that we could do both eyes at once since the right would have to be done eventually.  Is it possible that I got all of that wrong?  Yes, I suppose to a certain extent but I certainly didn't make it up either.  Fast forward to today and imagine my surprise when I saw an incision the entire length of each eye lids.


Getting ready for a heavy metal concert?!

The Surgeon was no where to be found either, they generally come in and talk to you immediately after a procedure.  I was asked by the Charge Nurse what the plan was and I told her I honestly didn't know.  We were only registered under ophthalmology, not a 'team' so no orders were in the system to feed B or give him any meds.  She then told me that the Dr. had left the building.  Thankfully that wasn't the case as he came by shortly after that.  He didn't understand why we were spending the night (obviously well versed in complex kids, not).  "As far as I'm concerned they could just go right now"...and when asked about only being under Optho his response was "Well don't call ME if there is an issue".  Wow, stellar.


Battered, bruised and still smiling

Of course in true ACH style we were picked up by Dr.Stoyan (who we had on Blue Team on 4th floor).  She came by and was happy to see that he'd been able to tolerate a food.  She also gave the okay to pull his IV out which was a good success.

His energy level is up (about 75%) and we'll take it.  He's certainly in more pain close to his Tylenol/advil dosing but is otherwise coping really well.


End of the night, bruising is coming through now

My fingers are very tightly crossed for discharge tomorrow...and to stay out for a good long while!  He is having some leaking from his g-tube port tonight so they'll have to keep an eye on it over night but it shouldn't be a huge issue (it damn well better not be anyhow).

Loving the Christmas Tree at RFH

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

Momma Burnout

Hangin' with my Jenn-abelle!

Hospital Burnout, that's the best name I can come up with...Hospital Burnout.

Hospital Burnout: When one has had it with trying to alternately be a SuperHero and trying to be in at least two places at once.  Sooner or later you just have to run out of steam, adrenaline only gets you so far.

I'm happy to announce that this particular stay is at least coming to an end soon so that makes this bout of burnout tolerable.  It is always around the three week mark (not that I don't have small bouts along the way) that I just feel so very D-O-N-E. 

Torin's 'Thankful Garland' (Compliments of Kelsey)...so wonderful!

It's been a more challenging visit (?) then usual being up on Unit 4.  We've had some truly lovely Nurses but it's really been a huge adjustment, for us and them.  Unit 4 doesn't usually deal with the complex kiddos so it was certainly growing pains on both sides.  The best way to describe it is that it is just a very different atmosphere up on the fourth floor.  I am however extremely thankful that we had the bed and the care in a hospital that is currently running at 124% capacity (no I don't know where the other 24% are sleeping!).

I am also thankful for the meals that we were given throughout (thank you Kelly R, Sumyu, Rachel, and Jodi H) and extremely grateful that my Mother has been here through most of it since the big boys have been so sick.  I don't know what I would have done since Ry is now on his third week off school starting tomorrow.  Hmmm, I guess it could just be plain ol' Motherhood Burnout then.

He's a trouper!

SuperBoy survives yet another blood test! Cutie Pie!

I'm not too sick Mom

Rylan is still sick, still under 'quarantine' per se.  His Scarlet Fever rash has lessened considerably but he still can't be around pregnant women or babies.  We are waiting (impatiently) for Cardiology to call for an Echocardiogram (ultrasound of the heart) to clear him to take antibiotics.  The Dr did a whole work-up of tests, since it's been going on so long, to double check for Rheumatic Fever.  We did have an ECG done but haven't gotten the results but we did also have an Abdominal/Renal Ultrasound done late last week and there is nothing glaring.  His spleen is enlarged and his bladder walls have some thickening but nothing 'life concerning'.  He can't go on penicillin since, on top of the Scarlet Fever rash, he had an allergic reaction.  The other antibiotic, Biaxin, can lengthen the q-t interval in the heart beat so we need to be really sure the heart isn't affected (hence the Echo and the ECG).  Needless to say on top of everything else, it's all just a bit much.

Torin, thankfully, has been on his antibiotics now since mid week (for Strep Throat) and is on his path of 'return to health'. 

My Mom has seemingly been fighting a cold as is Mike...am I on candid camera here people??

Mr.Stink-eye...:)

Shake, shake, shake!

Mr.B is however, full of himself and life.  He is so full of 'piss and vinegar' that he's ready to go, go, go.  It is SO nice to have our boy back!!  He is up to his usual tricks, he's making Unit 4 work!  I love to hear the stories of him ringing off his 'call bell' and making the Nurses come running.  In the hospital the call bell, TV remote and light over the bed are all on the one remote.  It also serves as the sound for the TV so often the Nurses will leave it close to his crib for the sound of the TV.  Little do they realize that he knows how all the buttons work and it doesn't take much for him to snag the remote and start pressing them.  I've heard several stories of how they couldn't figure out why the bells kept going off...hilarious!

Um, Momma, you kinda need some water in here!

Waiting patiently for my favourite time of the day!

B's also making leaps and bounds both vocally and cognitively.  His mind is a-working at warp speed.  He takes everything in and just absorbs it all.  He's got the entertainment factor down for the Nurses that have gotten to know him, he holds his finger out for the vitals sensor to go on and will lay down and hold a leg up for his blood pressure cuff.  I think it is also nice for the Nurses who've been around for the past three weeks to really see 'B' and not just smile and nod at me when I was describing what this little boy is really like.

The really good news today is that he FINALLY got taken off isolation.  He's been on isolation for VRE (superbug) forever (it seems) and he's finally gotten back the three negative tests that he needed.  Phew!!  He can actually go out and be social now which is nice...no more need for everyone to gown and glove up upon entering the room (although it also worked in our favour to keep him 'healthy' in the hospital too I think).

So why is he still there?  A few reasons: 1) He can't be around Rylan  2) He can't get 'sick' when he has surgery in five days, and 3) His urea levels are high

A very lovely and thoughtful 'feel good'
from Angelica in Fl...thank you! :)

The urea levels were initially thought to be raised because of the TPN (IV nutrition) he was on but he's been off TPN awhile now and the urea levels haven't dropped.  The hope is with extra fluid boluses (water) this weekend his kidneys will be able to flush the excess fluid out and bring the levels down.  I was hoping to 'spring' him on Friday but there was no where to put him and his levels were still too high.  He is now on his regular 'home' feeds so the only thing holding us are his urea levels.

I do however have a 'back up plan' in place instead of coming home, we've got a space reserved for B across the parking lot at Rotary Flames House.  Being as B needs to be back in hospital Friday for his eye/g-tube surgery it, and that he can't be around Rylan it makes the most sense.  They thankfully have room (they didn't Friday if we'd been released that day) so they've reserved a space for him from Mon-Friday.  They are also being very flexible if for some reason he can't be released tomorrow then we can postpone or cancel at the last minute.  I am SO very grateful they exist!!!  For those of you not familiar with the RFH they are a hospice that helps families out with respite when you have a child with a life-limiting illness...amazing!

Showing Grandma my favourite toy!

It's going to be a long week no matter how it plays out and I'm feeling really quite stressed at the idea of his eye surgery.  I'm not sure how to describe it but I'm a little freaked out that it is changing B's appearance (lifting and opening his eye lids) AND that he's been through enough crap lately.  I am however so happy that Dr.B is able to jump in on the surgery time and take out the PEG g-tube and put in the new AMT mini-one tube I ordered from the US (it's now in Chilliwack enroute here to Calgary!).


Add caption

It is also Justine's last week for a bit as well as Kelsey's AND my Mom goes home in a week....yikes.  Of course there is also this damnable holiday coming up that people keep talking about...we'll make it through all of it, ask me January 1st how I survived it (I'm predicting a bottle of Bailey's or two).

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