Thursday, 31 May 2012

Homeward Bound

Homeward bound
I wish I was
Homeward bound
Home, where my thought's escaping
Home, where my music's playing
Home, where my love lies waiting
Silently for me

This is the song that is going through my head this past week!

Well it's been quite a week and WOW what a weekend it was!!  Braeden has been growing stronger each and every day and blowing his Doctor's out of the water.  They are all stunned at the progress he's made in such short amount of time since his last surgeries.  It is amazing what can happen when you get two nostrils to breathe out of (getting rid of the feeding tube out of his nose)!  To say he is thriving would be such an understatement, he is so happy and content (most of the time, he is an infant afterall).  I can see that he is feeling better and that he is realizing that this world is a pretty funky place to be.

Braeden's world got a WHOLE lot bigger this weekend!  We took him on his first 'pass' out of the hospital to our 4th Blood Drive.  It was very sweet, we went as a family to pick him up and the boys were so excited (at least until he started crying in the car, sorry T).  I knew that CBC was planning on covering it if they could I just didn't realize that it was going to go national!  Who would have thought that Mr.B's first trip out of the hospital would end up delivering him into homes across this huge nation of ours?  (CBC Blood Drive Coverage), I just have to say that Dave Gilson was/is an amazing reporter!  He was so kind and so compassionate to our cause and to Braeden.  I almost broke down several times and was I was amazed I didn't appear weepy on the broadcast!  Dave asked me a few times how it felt, to have B out, to be there with our friends but there really weren't the words to describe it all.  I was certainly not expecting the reception we got walking off the elevator and you can hear me commenting "that's not going to help my make-up!".  The whole thing was a tremendous experience and one that we'll be able to watch as many times over that we want and Torin is thrilled we have it PVR'd because "Ry is SO funny!!".  It was also our biggest turnout yet and we had some more first timers come out!

Sunday was another pass and Mr.B and I got to spend some time with a few friends at a Shower compliments of my wonderful friend Lorna.  It was another great afternoon but it was all a bit much for B.  I had strict instructions not to pass him around on our outings as to try to limit his exposure to germs but even so he had so much stimulation over the two days.  I think all of the colours and noises would have been an overload without adding all the new faces!  We did a bit of a race back to the hospital (thank you Angie for riding in the back while watching him).

We all needed a break I guess because Torin and Rylan found themselves sick (again) this week.  I had to laugh because Mr. B didn't get a break, word got out that I wasn't coming in because the boys were sick and Braeden got inundated with visitors!  He is SO well loved there!  I walked onto the ward last week with his stroller and car seat combo and some of the nurses got teary-eyed.  I think about how exciting it is for us to move forward but also how hard it is for those that have gotten attached to him.  I know Braeden's 'special volunteer', Grandmaman Monique is going to feel a terrible loss when he comes home.  She was assigned to him and they both fell in love.  She sings and speaks French to him and I swear he understands her!  He responds to her voice and her energy and they both soak up each others companionship.

SO...the word came down the pike today (whatever that means)...we had the meeting of the minds with all the 'Powers That Be' and everyone voiced their opinion and (music please),





He has been cleared by all (and do you know how many he has??) Specialists and Dr's to come home now.  How exciting and terrifying!!!  What I came to realize this week is how little I do know about his care and how much the nurses, that doesn't sound right because I am more than aware at how hard the nurses work it is just that I've never had to do it all!  I had to vent his G-Tube at Lorna's house the other day and the room went silent as I did it.  I didn't think it was a big deal but it made me also realize how de-sentized I've come to medical things.  I joke that I've earned my Nursing Degree over the past 7mths but I don't want to nurse any other kids but mine!  In all seriousness though, without these Nurses (past and present) I could not have made this journey thus far without the complete and utter loss of my sanity.

So the plan is (barring unforeseen circumstances, back off Murphy) we'll bring him home for an overnight visit this weekend and see how it goes.  I am pretty much on my own timeline now, it is up to me to get comfortable with his care at home and just having him here with us!  It might seem like a no-brainer to some of you  but it will take a whole lot of self-esteem on my part to care for him with the confidence needed at home, not to mention to get any kind of sleep while he sleeps.  The great thing is that he can also be discharged over the phone if we get him home and just don't want to take him back...I've asked and asked and none of the nurses want to come home with us!  I know that I can do this, it is just a matter of doing it now.  There are things that are still really difficult for me to do like burning the granular tissue as a result of his G-Tube but I'll get over it, I have to!  The room is freshly painted (thank you Jodi, Scott and Troy) and waiting for him.

Everyone asks me how the boys are doing with all of this and it is a tough answer.  They are both very excited at the prospect of B coming home...but I don't think they grasp the reality of it and how much attention he needs or how much of my day will be consumed with tending to his needs.  It is going to be an adjustment, without a doubt.  I keep thinking that Torin will have a difficult adjustment with the noise but I know it is Rylie that is going to be in for a shock when he doesn't get as much 'Mom' time as he's used to.  Sigh, no point on stressing about it until it is here right??

The day I've been dreaming for is finally here and I find myself positively TERRIFIED!  How funny is that??  We do have great follow-up care in Alberta, I won't really be alone, alone.  I also can take comfort in the fact that we've got such an amazing group of friends here in Calgary and they have been my rock through this when I've not had family close by. 

So deep breath folks, and here we go on our next chapter...

Monday, 21 May 2012

Scarlet Fever and Happiness

We are running our 4TH Blood Drive in Braeden's honour in Calgary on May 26th. We have decided to do a week later due to the long weekend and Michael's work schedule. For those of you looking to donate please contact myself ( or Lorna Zebedee  ( as the spots have been already pre-booked and I can slot you in. The time of the drive will be from 9-9:30am and this will be the first one that I qualify to donate for.  I am finally (?) 6mths post surgery!!! Any extra support would be GREAT! We are hoping to fill all 15 spots that we have reserved and I am also hoping for continued press coverage of our event(s). Braeden did require further transfusions with his (just) past major surgeries and it is our continued goal to give back what we take
Baby Lousier-Hicks Blood Drive

It's been quite the week around here, I've been housebound for most of it with two kids with Scarlet Fever.  Go big or go home right?  I got the priviledge of finding out that Scarlet Fever is essentially Strep Throat with a really fabulous rash all over the body.  I actually thought it might be viral or even Fifths Disease as the boys looked as though they had been smacked, their little cheeks were so red.  So here we are with yet another course of antibiotics, myself included so that there was no possibility of transferring it to Braeden.  Because the kids were SO sick and Mike is working such long hours I didn't get to spend much time at all with B this week however (even without my presence) Mr. B has had an incredible week. 

Braeden's week started out with me walking into his room Monday to find a baby with NO nasal prongs on his took me a sec to figure out what was 'wrong' when I walked in.  He was pretty proud of himself, that is for sure.  It only lasted for about 1/2 an hour but it was a pretty huge 1/2 hour!  He has been off of his 'high flow' oxygen since then and is tolerating it really well, in fact he is tolerating it so well that he is basically on a whiff of oxygen and that is all.  He is still de-sating a bit (he did twice for no reason when I was there last night) but he does come right back up again.

The other thing that got worked on this past week was getting Braeden onto bolus feedings.  Essentially they started by taking three hours worth of food and then running it through the pump over a period of 2 1/2 hours.  He is now down to taking three hours worth of food over the period of only an hour.  He was also a bit uncomfortable last night when I was there (he was smiley all day until I got there apparently) and we did have to vent his feeding tube but he is otherwise tolerating the 'full' tummy well.

His G-Tube is healing well and it's not nearly so painful for him now to have it cleaned and turned.  He is obviously itchy under his steri strips though (the incision) because when he is on his tummy he wiggles and wiggles trying to scratch it.  It is only a matter of time before the steri strips fall off now and from what I can already see his new scar looks good.

What does all this add up to??  THE ARE READY TO CONSIDER SENDING BRAEDEN HOME.  Yes I said it, HOME, HOME, HOME!  Dr. Volmero figures it should be able to happen within the next two weeks...HOLY CRAP, I know!!  We have some hurdles to overcome still before it can happen but the thought of it is certainly there!  How do I feel about this?  TERRIFIED and EXHILARATED all at once.  I have SO much to do to prep for him to be home, my house is a mess!  The good thing is that he's not moving so at least the deep cleaning doesn't have to be the entire house yet!!  We don't even have a crib set up yet, partly because it was too depressing for me to have a completed bedroom and no baby.  I also wanted to paint his room but I really don't know what hours I am going to find to do that!!  I knew that they were heading towards getting him home but at our last conversation with the Dr's it was still a month or two away.  It is all because Mr.B is a SuperStar!  It is, and has been, all up to him to whether or not he can make do with less oxygen or not and he gets a challenge and runs with it.  I swear the way the kid grins at his nurses he knows that he is impressing everyone!  This is the toughest, most determined kid I know!

My biggest concerns are (obviously) the fact that he won't be attached to a monitor anymore and if he falls asleep in a car seat can he maintain his airway?  The Dr. said we'll have to figure all of this out over the next week or so.  I guess they do a series of tests before sending him home and then repeat the tests two days after the child is released.  What is another fear?  The fact is we might get him home and it may not last.  I'm trying to be as positive about it all as possible but Braeden is a little turkey as you all know and has pulled some pretty big surprises for us (physically) out of thin air (so it seems at times).

My biggest dream for Braeden once we get him home?  It might be silly to some of you but I just want to be able to lay down beside him.  I want to be able to curl myself around his little body and just love him.  There have been many times over the past six and a half months that I've wanted to just crawl into his crib with him!  The thought of being able to hold him anytime I want too is just so bizarre and foreign to me!

So I've done it, I've said it out loud and put it out there into the universe.  I was intially terrified to say anything in case I jinxed it but I need to believe that it is possible and that is what is so concerning to me, I feel H-O-P-E.  I've tried to be in as much of a positive frame of mind as I've could through this experience but have felt as though each time I dared to hope then something else happened.  I decided that this time I will hope, I will toss it out to the universe and let it happen as it may.  What will be, will be!

Monday, 14 May 2012

Happy Mother's Day!

Happy Mother's Day to all the crazy, wacky and wonderful Mom's out there!  I'm a day late but it still counts!  We had a pretty laid back Mother's Day, I cleaned house, did the dishes, went to the hospital, made dinner alongside Mike...pretty much the same as any other Sunday.  I wanted to thank whomever it was that made the gift 'from' Braeden.  I got a pendant that is a Scrabble tile with the letter "B" on it and a picture of Braeden on the other side.  How creative and time consuming!  It meant a great deal whomever you are!  I also want to thank the Mom that was handing out white roses to the Mom's there yesterday, just because she wanted to send out blessings on very kind.  Most of all I want to thank my amazing boys (which means their amazing teachers Tania and Corrie and T's Aide Kelsey) for their wonderful gifts for me.  Michael and Rylan picked out a dozen yellow roses for me too, can't say I wasn't a bit spoiled.

Mr. B is doing really well considering he is only a week and a half out of major, major surgery.  He does have an infection in his G-Tube which causes some serious discomfort when it is tended (which still makes me more than a little ill) and he is being treated for a UTI (urinary infection).  Good thing the antibiotics cover off the UTI and the G-Tube I guess.  Al of his nurses are commenting that he is back to his old happy and flirty self which is good to hear.  How could you NOT love that face?!

He is also starting to grab a bit for things and will track a toy or person really well now.  We had our first 'floor' session with him (physio) to day which was a big milestone.  He enjoyed the change of scenery but he still tires out really quickly so it wasn't a long play.

The exciting news is that he's been able to breathe better since surgery (and losing that NJ feeding tube out of his nostril).  He is down to 3 litres of high flow which can essentially be regular oxygen now.  He is sustaining it for the most part so the Paediatrician and the Respirologist were going to meet today to see if they want to try him on regular flow exciting and scary.  B can't come home on high flow but he will be one HUGE step closer to coming home if they can get him on regular flow.  The G-Tube might be a bit intimidating but you can't argue the fact that he can now breathe so much easier now!  I think that he'll be okay with the regular flow as long as he is awake, it is when he falls into a deep sleep that I'm thinking he'll need more.

The other exciting news is that he tried drops of breast milk on his syringe today and he tolerated it quite well!  That is the reason for still pumping after six months, I knew there was a good one!!!

The Paediatrician has mentioned the 'H' word a few times (shhhh, we don't say Home out loud), not for the near future but for a possibility.  It is so hard to hear it because until they sign me out and I dash outta there I won't believe it is possible.  We are probably looking at another three months, but who's counting?  AND I don't believe that they won't just 'find' something else down the road.

Anyhow!  The photos are from yesterday, we are a family full of love that is for sure!  Braeden is starting to 'laugh' in his Braeden-grunting kinda way and it is SO very sweet!  I think the last shot of B and Mike is one of my favourites to date.

Wednesday, 9 May 2012

Out, Out Damn Clot

Mr.B is getting back to his super cute self (not that it went away very far).  He is feeling more like himself these past two days with giving out free smiles.  I've been holding my breath over the past two days though waiting for a couple of ultrasounds.

The Anaesthesiologist that did Braeden's surgery could not get lines into either side of his neck.  Now this is concerning on a few angles but most of all the fact that he was in the vein on the ultrasound machine but he couldn't proceed with the needle.  He was convinced that after the surgery in the recap that there were thrombosis on both sides of his neck(blood clots).  Now like that isn't terrifying news enough but he just jabbed at them with a large needle repeatedly which could dislodge them.  Nothing like trying to sleep at night wondering if your child is on a time line to have another stroke at any moment.  The preliminary results of the ultrasound (via his Nurse tonight) is that NO clots were visualized on the ultrasound today!  That is fantastic news without a doubt but gives no explanation to why he couldn't get his lines in either side.  What the 'conclusion' is just another quirk to B's anatomy seems the closest to an answer.

We did have a second ultrasound today for his pelvis as well to check for hernias, look to see if there is an answer for the whitening of the scrotum and to visualize the bladder and ensure no damage was done by the 'stuck' catheter.  Little B does have hydroceles in both testicles but we already knew that going into surgery.  At least his scrotum isn't the size of a mandarin anymore (or white)!!!

He is back up to his full feeds as of tonight as well, 37 mls an hour.  We will try to concentrate it more to the higher calorie version tomorrow and see if the retching starts up again.  He is off Morphine now which is good since he blew out his central line yesterday (the last line in) but he does have it on PRN (which is as needed).  How many of us could have such extensive surgeries done to us and be off Morphine after only 5 short days?  Who knew Tylenol could be so effective.  This kid's ability to heal just blows my mind!!!

The sad news is that we still have no news of our Cat, Sasha.  The hope that she'll find her way home is waning and it is really starting to hit me tonight.  Our other female (Sasha's Mom), Bailey has her health failing and it really looks as though we are going to lose two out of three of our cats within a week or so of each other.  How do you explain that to kids??  You know it is one thing for me to have to sort though the crap of life but it cheeses me off when some of it falls to the kids and I can't prevent it.  We do still have Oliver but he still won't go outside alone (can't say I blame him) and he is now having trouble jumping up on the bed...I am so far into overload theses days that I should be six feet tall to accommodate it all or it's gonna start leaking out.  The hard part is even when Braeden is feeling a bit better I have something else emotionally exhausting to concentrate on.

Today it is a focus on the positive of the ultrasounds and just keep crying for the negative for the loss of a family pet(s), not exactly the balance I strive for.

Monday, 7 May 2012

Happy 6 Months Baby Boy! (and Surgery Re-Cap)

This is an amazing day for many reasons but the biggest reason of all is that it is Braeden's 6mth Birthday today!  There were hours and days where we truly didn't think that we'd have him with us for this long so to reach this milestone is so wonderful.  He continues to bless and amaze us each day!

This is gonna be a long one folks and please excuse any errors, it has taken me hours to write and I've not had the energy to proofread it...

We are now 72+ hours out of surgery and I am wishing that I'd had the time (and energy) to blog over the past few days but Braeden needed me at his side and that is where I stayed.  We made it back up to the second floor yesterday and even into our old room.  I think that someone is saving it for us since this is the third time we've now been put in our room.  Mr.B is getting stronger and is looking better and better.  He got a very welcome reception on Unit 2 yesterday and everyone was thrilled to have him back so soon.

The day of the surgery was the hardest (and the 24 hrs following), we had so much anticipation up to the day.  Who am I kidding?  It was one of the worst weeks to have to go through up till last Friday, wearing a smile when all I wanted to do is sit and cry out of fear and worry.  Mike and I got in a nice cuddle/chat with Braeden the morning of the surgery.  He was happy and full of love and life when he woke up that morning so I was glad that we went up extra early to get in that time with him.  I dismantled what was left of his room and packed up what needed to be packed up.  Thankfully Unit 2 was able to store most of his bigger stuff like his swing and such so we didn't have too much to transport. 

8:45am, We went to leave his room to go up to pre-op and B lost it.  He screamed/cried the whole way upstairs (thankfully only one floor).  I tried to calm him once we got up there (I actually had to ask Mike to re-count what he remembered because so much of this is a blur for me, three days ago and it is already a blur), and he calmed down somewhat.  We were met by the surgical team and this is where my blood pressure reached it's peak...the Anaesthesiologist went first with his explanation (don't really remember) and then he said, and I quote, "You are aware that this is a high risk surgery?  That your child is the highest risk of the highest risk?  He may not come out of it the same, blah blah blah (this is where I was hyperventilating), he may have cardiac arrest on the table, he could have further strokes, blah blah blah...Switch now to me who just stood there with I'm sure a rather sick look on my face while nodding my head while thinking, "Can I change my mind now???".   Then we were introduced to an ENT (have NO idea what his name was) and he said that Dr.Brooks (our reg ENT) asked him to look at B's ears while he was in surgery to see if he needed tubes in his ears.  We had NO previous knowledge of this, it wasn't on the consent form that I had signed an hour before, and I barely remember the conversation with him, let alone WHY.  Dr. Brindle reassured us (to the best of her abilities) and reviewed what was going to happen during his surgery.  We then LET them take our child I guess because the Surgery Manager walked us out to the family room on the second floor.

The family room on the second floor was a nice (?) place to wait, it was fairly quiet at first.  It is a large room with couches and a mini kitchen with a microwave.  There was a ton of puzzles so Michael forced me (I hate big puzzles) to start on with him to keep our mind off of Braeden and what was happening.  The Surgery Nurse told us she would come in around 11 and let us know where we were at and true to her word she was there right close to 11.  She told us that the Anaesthesiologist was having and incredibly hard time getting his lines in and that Dr.Brindle had not 'cut' him yet.  I know B is a hard poke but he was out, shouldn't he have been a bit easier since he wasn't moving?  She told us she would return at 1pm with another update.  We then heard Braeden being paged over the hospital intercom (that was funny) to return to the Unit.  Then we got the page for the parents of Braeden to please come to the Unit, that made a bit more sense.  We had left our stuff in his room on Unit 2 and they needed us to clear it out so we brought what we needed back to the Unit 2 room and continued on our puzzle.  We were rudely interrupted by a group of four women who came into the room for a break of some sort.  They weren't wearing scrubs and I think they were students of some sort but I don't know.  They sat right next to us, turned on the TV and talked non-stop for over an hour on their cells and to each other.  The Surgery Nurse came back in around 1pm to say that Dr. B had just cut into Braeden at around 12:15 and she figured she'd need a good three hours.  After hearing that what we were going through I thought these women would be maybe a bit quieter but nope.  It didn't help that my nerves were completely on edge of some point they left and the G-Tube Nurse came and found us to teach Mike about the G-Tube.

Dr. Brindle came into the room at 2:15 to announce that her part of the surgery went really well and she was really pleased how fast it went.  She said it was all very straight forward and that he was a champ.  His stomach was a good size for the Fundo and that he did get tubes put in his ears (I still don't know why).  I remember asking about the G-Tube (4 mls of water in the balloon) and not much else.  We were told he'd be in the PICU in about 45 mins and the G-Tube Nurse said she'd keep us busy till then.  I swear I watched that clock every minute for the next 45 minutes.

I vaguely remember asking the Nurse at the PICU desk where Mr.B was and I think she walked us to his room.  When we got to the room I think he must have been upset because I can remember holding his hand, crying and saying that I was sorry (I did that a lot over the last three days).  The very nice nurse Katherine walked us through his surgeries and showed us the sites, I was surprised at how small the incision was on his tummy (it is only about three inches and I was expecting five or six).  I was the most upset at seeing him intubated again and seeing all of the puncture sights on his arms, legs and neck from the failed line attempts. I know that he did settle down and that I got a half smile from him which I thought was amazing. The next several hours are a blur, I know Mike left at some point to put the boys to bed so they wouldn't be stressed and I know my dear friend Lorna arrived and then Wade and Jean.  Lorna took me out for some dinner since I'd not eaten all day and needed a break.  We went back and Wade and Jean went home to bed and Lorna stayed on with me and drove me home around midnight.  I only left because his nurse Kat told me that she would NOT leave his bedside, that she would sit and watch over him just where I was sitting.  I felt horrible leaving but Mike was really concerned about me and the fact that I am averaging only a few hours of sleep a night right now.  The Nurse had to be at his bedside as he was intubated and he was so drugged that I don't think he would have known if Santa was there.  I came home for a few hours and got about three hours sleep before showering and returning.

When I got back in the morning Kat had her hands full and had been hopping since shortly after I left (I KNOW I shouldn't have left!).  Braeden was thrashing when I walked in the room and Kat was just giving him another bolus of drugs.  It is hard to know if it was pain he was in or if it was just that he was so very pissed about being intubated again that he couldn't/wouldn't settle.  They added Medazalam to his Morphine and that still wasn't enough so Kat was having to bolus him with BOTH drugs every 20-30 minutes.  He was just getting bolus after bolus.  The main fear of course was that he would extubate himself with the thrashing and it was absolutely horrible to watch.  I was on one side of him and Kat was on the other administering the drugs and we would hold him down until the drugs kicked in again.  I sat barely breathing for hours watching him with the fear that the thrashing would start up again which it inevitably did.  It was about 6 am that the epidural stopped working and Kat finally turned it off.

The decision was made that he needed to be extubated so the good (?) thing is that we were put on first for rounds and therefore could extubate him earlier rather than later.  Kat was off at 7 am and we were cared for by Courtney for the following 12 hrs.  If it weren't for his great nurses I don't think I could have survived those first two days without losing my shit completely.  Nothing moves quickly in the PICU when you want it to (unless it is for urgent medical care) and it is worse on the weekends.  They got rounds done on B but didn't get the tube out till after 11 am.  I have to say this kid is such a trouper, he is so amazing.  The Anaesthesiologist came and tried to get the epidural working again.  It was the same Dr that he had for surgery but he had a much easier personality and was kind to me when he saw me.  I guess when he doesn't have the pressure of having the "highest risk of highest risk" surgeries ahead of him he is quite pleasant.  They had just given Mr.B a shot of Ketamine (the equivalent to horse tranqs it would seem) so he was completely out of it.  He had to remove the dressing and back the epidural up to the site of entry where he finally found a kink in the catheter.  The epidural catheter isn't much bigger than a thick hair so it's not a surprise it would kink.  He re-dressed it all because he had to be sterile and of course the only way he could get it to work was to apply a bit of pressure to the site once he got done. He added a bit of tape to it and rolled him back onto his back and it seemed to work.  I won't tell you how anal he was about the fact that the Nurse assisting him cut his tapes crooked...I actually told him he was doing arts and crafts as he got the scissors to straighten them.

After that he was extubated brilliantly and even let out the loudest cry that I've ever heard out of him, Grandma was so happy to hear it.  He was still far from happy but he was visibly more comfortable.  He even had a growl fest with me (it is Braeden's way of talking, he growls at me and I growl back).  More hours of blur and we switched Nurses back to Kat again.  Mike and I finally left around 9 pm to grab some dinner and I had asked Kat to call me if they chose to start his feeds that night.  Sure enough half way through dinner I got the call that she got the go ahead to start his feeds and we went back to the hospital so that I could pump and he could have fresh EBM to start his feeds.  I wanted him to have nothing but EBM for the first 24 hrs so that his poor guts could get the best treatment they could rather than starting with the formula mixed with EBM.  He blew out his second IV line and it got pulled leaving him with only his ART line (take blood pressure and can be used for blood withdrawl) and his Central line.  Kat put him on his tummy because he could not settle and his eyes literally rolled up in his head with the pleasure of being prone again.  I felt okay to go home for a few hours of sleep again so Mike and I crashed around 1 am. 

I woke at 2:30 with a start and was wide awake and thought I was just thinking about Braeden so I went back to sleep.  When I went to go back to the hospital at 6 am there were two bikes in the middle of the blooming road.  Turns out the sound I heard were some hooligans or something that got into my neighbours garage and took her three bikes as they left her door open and I let her know after driving by.  It turns out they went through a good deal of our two block radius taking random things.  There was also a car that was parked with the headlights on, window open and windshield wipers on...yup, it was stolen.  Oh, don't worry the weekend get crazier.

Braeden was certainly doing better Sunday morning after having a good sleep on his tummy even though the epidural had crapped out shortly after I left the night before. He was asleep when I got there and woke shortly after.  He had a good conversation with me and was quite alert which was reassuring.  The main concerning thing was that Kat had been unable to remove his catheter the night before.  She said she was unable to advance it or pull it out.  It had been reported that they had difficulty inserting it in the OR and that they didn't/couldn't inflate the balloon at the end of it (that holds it in the bladder).  We switched to Courtney again and she informed me that he would most likely be moved upstairs later that day.  Yay!  I had forgotten the craziness of the ICU, the constant drama there and it was a very busy weekend with people coming and going.  It was disconcerting being in a room without a window and not really knowing night from day so it would be nice to be back to sunshine.  Mr.B would be sleeping peacefully then wake up at full tilt screaming and arching in pain only to get a Morphine bolus and return to sleep.  I asked Courtney, the Dr at rounds, and anyone else I could about why the catheter wouldn't come out and what needed to be one knew!  Apparently Katherine had only seen one other case of it happening in her 12 yrs, yikes.  The Resident came in to try to get an IV line into Mr.B so that his central line could come out.  He poked him SIX times without success.  It ended with my forehead pressed to Braeden's and both of us crying somewhat uncontrollably.  I let him poke him that many times because I know the risk of infection having a Central Line in and that is the only reason I didn't climb over the bed and kick him in the shins or worse.  The most amazing thing about this kid?  He is so very forgiving, he gets poked six times and still finds it in his heart to love me!

We did get the go ahead to go back up to Unit 2 but we had to wait until the Nurse shift change upstairs at 3 pm.  It was a long wait but it was worth it!  I took the little stuff back upstairs that I had kept with us and it was like coming home in a sense.  We got our little room back again and it was so beautiful and sunny, not like the cave of the PICU.  When it was time to move B back upstairs he was sound asleep and slept through most of the transfer and then when he had to be transferred to a new crib he woke up and was very unimpressed.  It took a bit to calm him but I was able to calm him down and get us re-settled on Unit 2.  He has rough periods but is doing remarkably well for the most part.

We had a busy day today, pretty much concerning everything within the diaper itself.  I won't go into too much detail but suppositories were involved in some of it.  The Urologist finally came to see Braeden after his Nurse Jenny and I opened his diaper and found his scrotum to be white (no blood flow) boys, you might want to skip this chapter.  It was going white when he was bearing down in pain (or to poop) and Jenny had never seen it happen before.  The Urologist arrived to try to remove the catheter (keep in mind it had been tried by three other Doctors and one Nurse by this time).  He asked me for B's medical history...ummm, are you kidding me??  I asked him how much time he had and he replied (quite unimpressed at my fabulous wit) that he had as much time as needed as it was necessary.  He kept saying "It is very strange that it won't come out", yank, yank.  He did what he could and figured that he would go to get a wire to pop the balloon at the end of the catheter...didn't I just tell him that it had never been inflated??  He returned with supplies in hand and tried to first inflate the balloon with mineral oil, which made Braeden scream, then he pulled, which made Braeden scream, then the twisted, which...yup, made Braeden scream.  He put in the wire and did some more wiggling and I stopped paying attention to him and concentrated on B's SATs instead.  Finally (with much crowing) it was removed.  It had crystalized around the catheter and it wouldn't fit to come out.  I asked how this was possible and of course he told me that it is very rare for it to occur...leave it to Braeden to overachieve again!  As for the loss of blood flow to the scrotum (it does return again), he is up for an ultrasound tomorrow to have it checked out.  The hope (?) is that it was simply the catheter pressing on a vein and temporarily cutting off the supply.  The risk is that it could be something more serious and he could be going back under the knife for a repair....not going there.

So the rest of my crazy weekend??  For those of you that know us, we have three senior cats (14, 15, and 16 yrs old).  My cat, Oliver is a huge 22 lb Manecoon and we have two small tabby females, Bailey and Sasha.  Now Bailey has been ill for some time but with B and all it's hard to concentrate on our poor sick cat.  She had a hyperthyroid and I give her meds twice daily.  So through all of the stress of Braeden, we've also been prepping the boys for the fact that Bailey is dying and the others are old and sick as well (Oliver is a diabetic and needs shots twice daily).  Torin loves these cats (Bailey especially) like there is no tomorrow and gets quite stressed when Bailey isn't feeling well.  My cats have always been outside cats and we've lived at this house for over six years now without too much incidence.  Oliver and Sasha were outside late last night, as I let them out for a final pee every night, and Mike heard Ollie yeowl outside the door.  Mike figured that the neighbour cat had him pinned again and swore when he opened the door.  He then informed me (after telling me I didn't want to know) that a fricking Coyote had Ollie trapped at my front door.  I (of course) go running out in my robe to find my cat paralyzed with fear at my front door.  I got him coerced inside and Mike went to get a bat.  Of course the animal had fled but Mike said he was so large that he didn't register at first what it even was.  So the tragic part in this is that we've not seen Sasha again since last night.  Our hope is that she fled and is holed up somewhere but the alternative is just so horrible to consider.  I ask you again, when does my life slow down??  On top of all the stress that we already have, now we have this, a missing and quite possibly killed animal.  One does not know if they make something stronger than Ativan (other than Vodka) but I might surely need some soon!

So if you've made it through to the end of this post, kudos to you and thank you for taking the time to read it.  Please not only send your positive thoughts to my dear son but also for the safe return of the family pet (as I so don't want to and can't deal with it right now). 

Saturday, 5 May 2012

24+ hrs post

We are 24+ hours out of surgery now and he is getting stronger by the hour.  It was a very rough first 24 though and we are happy to see them behind us.  Thank you to everyone for your well wishes and positive thoughts.  I will write more on this post once Braeden is able to fall into a 'real' sleep.

Thursday, 3 May 2012

T'was the Night Before Surgery...

T minus 12 hours and counting (at least it was when I opened this window and started this post)...

We have our surgery time booked for 8:40am tomorrow.  It will be somewhat of a relief to be on the other side of the surgery for a change.  I'm certainly looking forward to moving forward.  We are set to go with the Ladd's Proceedure, Fundoplication, G-Tube feeding tube, Appendectomy (part of the Ladd's) and possibly repair to his Umbilical Hernia (which actually seems to be healing on it's own).

Mr.B's had a rough couple of days being 'prepped' for tomorrow he screamed his head off through an abdominal ultrasound and didn't fair any better with his blood work today.  Poor Grandma Jean had to see the not-so-happy side of B and it was a strain for her to see him so upset.  It is hard enough for me to endure and I see it often so I can only imagine how it would be very difficult for her. 

I'm not honestly sure what set him off for the ultrasound as he was doing well before we set off for it but as soon as we left his room to go down he cried like he was going to the torture chamber.  The ultrasound tech was more than a little 'put out' that I didn't want her to scan her till he had a chance to calm down.  I got to pick him up to which he calmed right down so we tried again by putting him down and off he went again.  I got the tech to let me hold him while she scanned his back and got some shots of his kidneys. Even with that we still had to stop a few times and give him a minute to calm down.  How do you explain the fragility of a child to a tech when she's got a job to do?  Oh well, she had to suck it up!  We didn't get the tummy done but we did get to see enough of the kidneys to get shots of the cysts to monitor them and to see that there is no further swelling present. 

Mr.B was rightly pissed at his blood work today, they took three pokes for the first round, found out one of them didn't take (it clotted too quickly) so they came back.  Round two, two pokes in and they decided to just 'milk' his heel.  Now for those of you that have never had to suffer through watching this done to your child then I will just say they prick the heel and just squeeze it repeatedly forcing it to bleed droplets for them to collect.  If they are doing it simply to collect blood for say a blood gas it is usually not that big of a deal and the nurses are fast but when you've been poked FIVE times with little success, enduring the squeeze of the rubber tubing each time it gets to be much.  She also needed to collect what seemed like a lot for a heel poke as well!  SIGH.  Sorry to my nurse friends reading this, but it was awful to watch and they are lab techs, aren't they supposed to be good at pokes???

The flip side was that the tech came in to do his Echo Cardiogram shortly after the heel milking and I had him very calm and almost asleep.  He gave a half hearted fight but was too exhausted and settled into sleep so I am assuming she got some good pictures.  I didn't hear anything from Cardio so I guess that means we are good to go for tomorrow.

The gross and disturbing part of the last two days have been my 'classes' on the maintenance and use of his new G-tube feeding tube.  I know I'll get used to it, I know it won't be that bad but man, it is not pretty.  It is just yet another learning curve to follow and one that will give him a better quality of life so I'll just have to suck it up.  I love that the two training nurses keep going on about how you can compare it to getting an earring (in terms of the cleaning and maintenance), maybe I'll need to add some bling to it?

Our little Squeak is a fighter and a damn good one at that so I'm not too concerned at his ability to handle the surgery.  My fear lies more with what Dr. Brindle may find once she is in there. 

I will try to write a short post tomorrow when he is out of surgery but I can't guarantee too much!

Thank you to everyone in advance for all of the love, support and positive thoughts that we've got coming our way, (my phones been a-buzzing tonight)!