Friday, 30 March 2012

Big Ol' Dose of Feeling Sorry For Myself

"Nobody knows the trouble I've seen...
 Nobody knows my sorrow..."  (sung in a baritone voice of course!)

Yep, got a big ol' dose of feeling sorry for myself tonight.  I should be feeling thankful that I've not been sick all that much over the past five months considering how run down I am but all I am feeling is frustration.  How much does it suck that I cannot see my child?  On our return to the Dr (a different one this time) I am notified that not only do both boys have bronchitis but Ry has ear infections and T has a sinus infection.  I, myself, am on my way to pneumonia.  WTH?!  Is that NOT what I told the Dr that we had (because I have my medical degree now...) last week?!  The Dr says, "what antibiotics were you guys put on last week?"...uh, none!  So much for it being viral!  I'm all for being cautious but I explained to the Dr last week that I've got a child in hospital and that I cannot be sick!  ARGH!  Of course when my Father-in-law went in for his visit today he got told it looks like strep throat for him...where did that come from?!  So we are all riding the Amoxocillin train in my house, well all but Michael who is strictly in denial that is (said lovingly of course).

I HAD to see Mr.B Weds night, he was out of sleepers and I was out of bottles.  I couldn't in all good consciousness NOT see him if I had to go up.  So I took Wade with me and we both masked up and when I walked into his room he was being cuddled by a volunteer.  It is heartwarming that he is getting love and attention but I would be a big fat liar if I didn't say I was jealous!  She said, "oh, are you family?".  Yes, I'm his Mommy Dammit!!!  She was so surprised that I came all the way up just to give him clean sleepers so he didn't have to wear the hospital ones.  Making him comfy is the ONLY thing I can do right now.  I did get to give his back a little rub and touched his head before gunning it out of there.  I am HOPING now that I've been on the antibitoics for over 24 hrs that I'll feel better tomorrow but it was more than a little disconcerting that I felt worse this morning, not better.  Poor ME!!  (even I'm getting a little sick of myself now!)

The wonderful, yet painfully heart wrentching, thing is that Braeden has had a wonderful week mostly with nurses that know him well.  His nurse Deb (who we love) told me the other day that he'd had the best day she's ever seen him have.  He's been happy, playful and having long 'alert' periods.  Great eh?  Why is it he's not missing me?!  (don't worry, laughing at myself as I type it).  Poor Deb felt bad for telling me but on the other hand if he'd been having a rough time of it then it would surely be worse to hear knowing that I can't/couldn't do a damn thing about it.  He's certainly been well cuddled this week and loved thanks to his volunteers!

So what was supposed to be a productive Spring Break week for me with having Wade fly out for it has turned into a week of me feeling sorry for myself instead.  Well that and caring for two very sick little boys at home.  We will hopefully get to the multi-disciplinary meeting next week (cancelled due to my illness) and I've rescheduled my FSCD meeting for Monday as well.  Fingers crossed that the antibiotics do their job and that I can finally get my fix with my little man, and not have to survive on smelling his blankets that I brought home to wash (yes, I know I might have a problem). 

Aren't you glad that you don't live with this hormone train running on empty?!

Wednesday, 28 March 2012

Ground Glass and Arsenic?

Here I am, down for the count.  Yeesh!  Whenever my children ask me what is for dinner I respond "Ground glass and Arsenic" as it is what my (oh so wise) Grandmother used to say.  I certainly feel as though I swallowed glass but energy wise I don't feel as horrible as I did yesterday.  After vacuuming and showering yesterday I had to lay down, I know, who bothers to vacuum when you are sick?  I hate being in a messy house when I'm sick, it just seems to prolong it for me.  I am taking my Gripp-Heal, Engysol and Zinc tablets religiously so I am hoping for a shorter version and trying to be positive (not that the first couple of sentences sound like it).

My poor boys (the big ones) have now been sick for 11 days (and counting), they finally had a brief interlude of energy yesterday but I spent 1/2 the night in and out of their room again while they coughed their little lungs out.  I am hoping with all of the lysol-ing and airing out of the house that I can somehow prevent my Father-in-law from picking it up, though with the kids crawling all over him that might be a pretty long stretch.  I was just going to write that B seems to have had a fever for a day and that was it but the phone literally just rang and his nurse Deb informed me that he's now on isolation.  SIGH!  He's been gagging a bit this morning and had a spit up with a 'vomit' smell (sorry for the queasy ones).  I actually feel better if they err on the side of caution with him, isolation isn't a big deal, it just looks worse than it is.  There are many kids on his ward that have viral illnesses so for them to take precautions before seeing him isn't such a bad idea.  Being on isolation means that in order to be in the room you need to wear a gown, gloves and a face mask which you remove upon leaving the room, thus leaving the germs behind (hypothetically).

Mr. B also had a concerning spit up (yes, this is what my life has come down to, analyzing spit ups), last night that was brown in colour.  The Dr did a good look over him as the biggest fear with him right now is the chance of a volvus (kinked intestine), but he looked good otherwise.  The Dr is speculating that maybe he had a bit of a bloody nose and some went into the stomach.  It wouldn't be such a stretch due to the high flow oxygen.  Another idea is that due to the high flow oxygen you can form small ulcers in the nose and stomach from the pressure...we're not going there.

Our big meeting has now been postponed for a week due to my illness which is fine, I can wait another week.  It might be easier to mesh schedules next week as it is anyhow it just means I don't have someone in my house so I can be there under short notice.  We'll figure it out, they are already talking about teleconferencing Michael in on it if he can't leave work.  Besides it gives me another week to form another thousand or so questions.

Back to my hot lemon and honey...

Sunday, 25 March 2012

No Energy Left for a Catchy Title Kinda Day

I am taking time out of my non-stop hand washing/disinfecting every surface in my home that I can.  The boys have been sick now for 8 days and there is no sign of it letting up.  The Dr tells me it is viral, although I'm not convinced due to the green coming from lungs and noses, so fluids, popsicles and jello it is.  My biggest fear with it is that I will somehow transfer it to Braeden so my hands are down a few layers of skin with the constant washing and cleaning.  It is hard having sick kids that feel so very miserable but even harder when the health of your baby lies in the balance of NOT getting sick.  I am so concerned that what the boys are fighting (if it is in fact viral) is the Respiratory Syncytial Virus (RSV). B has been inoculated for it (as it is so scary in infants especially preemies and lung disease patients, which he is both) but the thought of having it in the home and carrying it over to the hospital is terrifying nonetheless.  I am thinking that I'll be back at the walk-in clinic again tomorrow if this keeps up with the same strength it is going. Mike and I went out for a drink and to be social at a friends Saturday night for the first time in months to only find out an hour later that both boys had coughed so hard they threw up...loverly!!

The sad part of the week came when I had to take Keeta, Mobee and Rafe back to the airport to go home (but with the illness (or my overall grumpiness) in the house I think they might have been trying to escape!).  It was a wonderful visit and because they were here I could be assuaged that B was in great hands with sending my sister to the hospital so I could take care of myself.  On the flip side we did only have to wait a mere 24 hrs before the arrival of our next guest, Pappa.  Of course Wade got only about 24 hrs before he too started feeling ill. 

We did successfully complete our third Blood Drive yesterday and had another 6 donations in B's name.  Thank you to my wonderful Husband, Tania Stevenson, Ursula Stevenson, Corrie Gosse, Candace Mills, and Kathy Mills.  Also a huge thank you to Jenn Mills, Terra Mills and Lorna Zebedee for your unending support and help!

Mr.B had his ENT test on Friday and I stupidly forgot to take an Ativan with me to the appointment.  He was a trooper, there is no doubt.  He screamed his head off through the whole test, it was pretty clear he was NOT impressed with this round.  What he did do though is made it through and did some great swallowing on camera that Dr. Brooks was able to catch.  He still can't have food orally but they are going to try him back on an NG (into the stomach) tube to see how he handles it.  What the test showed us is that if he does have a larger reflux the Dr and the SLP are comfortable that he can handle it and not aspirate it.  Fingers crossed tomorrow that he isn't too refluxy (yes, it is now a word) and can tolerate the food into the stomach again.  He survived the test but then decided to see how fast my heart could race when his heart rate flipped up to 205.  The great thing is that he was able to be calmed down enough (although he was pretty calm when he flipped into SVT) to convert himself.  He was exhausted at the end of it though and did need to have some blow-by (extra oxygen by his face) a few times once we got back upstairs.  He was very pale for an hour after and when he finally slept he slept hard.  Bottom line, we both survived it.

The other good news is that they lowered B's oxygen flow rate down to 4 litres this week.  He seems to be tolerating it successfully.  He is working harder to breathe but he is still able to maintain his O2 levels with consistency thus far.  They will look at possibly going down a bit further this week to 3 1/2 litres if all goes as planned.

We are still hoping for the multi-disciplinary meeting this week and I finally get to get the FSCD (Family Services for Children with Disabilities) contract started (fingers crossed) for him.  It won't make a huge difference but they will hopefully cover parking and a bit of our mileage.  Every little bit will help being as we are burning through gas and parking (which we've been able to apply for other coverage for) each day.  I am constantly thankful that we only live 15-20 mins from the hospital because if we lived in the south or far north I don't know how I could make it work.  We've more than doubled our gas bill for the van in the past four months and with the price of gas going up I might need to start riding a bike (where to put the car seats though?)!

So we've got a busy week ahead with appointments and just keeping myself free of this yicky illness but I do have the help of my fantastic Father-in-law here (assuming he doesn't get more sick too!).  

A happy (only a little bit of sarcasm) Spring Break to all!

Thursday, 22 March 2012

Processing, Processing, Processsing...

I have spent the last two days processing, processing, processing after my chat with Dr. Brindle, B's next surgeon.  I was left feeling sick to my stomach and riddled with anxiety after our conversation so it's taken me a few days to just digest it all.

Basically what needs to happen with Mr.B's intestines is that they put all of his small bowel down the right side of his body and put his colon down his left.  It is called a Ladd's Procedure (there wasn't an article that didn't make me feel nauseous that I wanted to add for you) and it is done regularly and with confidence at it's outcome.  The thought of them having to pull out his small intestines and reposition them...well let's just say OMG. 

They will also go ahead and do an appendectomy at the same time as his appendix will never be in the right place ever again (not that it is now).  It would be kinda hard for someone to diagnose appendicitis if they didn't know where it was.

Since they are in there anyhow, they will repair his umbilical hernia.  It's not something they would put him into surgery for normally so it is just a "might as well do it since we are in there" situation.

The NEXT major part of the surgery is the Fundoplication (or fundo), where the wrap the upper part of his stomach around his esophagus.  Yup, that's what I said.  This will help to stop or at least minimize his chance of reflux and therefore lower his risk of aspirating (reflux of fluid) into his lungs.  Although it does come with the side effect of additional retching...lovely.

The last part will be the addition of a G-Tube which is a feeding tube that goes directly into the stomach.  This will ensure that B will get the full nutritional needs that he requires while still giving us the option to hopefully get to a place that he'll be able to take some food orally (some day, fingers crossed).

I know as I am writing this it might sound somewhat unemotional and clinical but it is just a survival technique for dealing with what they have to do to my poor poor baby boy and really, there is no way to put into words the emotions that I feel at any given moment in regards to Mr.B.

We do have the ENT swallow test tomorrow. That is a scope of the vocal cords and throat to see if they are functioning more and whether or not his swallowing is getting any more efficient.  This will be the first test since his 'crash' and I am a wee bit terrified of stressing him in anyway to be honest.  I am also really hoping that I will get to be there as this is my second day at home without seeing him due to a sore throat.  I'm fighting it tooth and nail with the homeopathics that I have and have hope that I'll feel better by tomorrow.  Thankfully I've got my sisters here although Christa is down for the count with this terrible cold as well but Monique can at least be at the hospital with Squeak while we (that would be me), feel sorry for ourselves (and watch over three boys), here at home.  It's also been a blessing just having company around not to mention laundry folded (AND put away), dishes done and my bathroom scrubbed within an inch of it's grubby existence!

The next big step towards a surgery date is to have the multi-disciplinary meeting and have our questions answered as well as have the other specialists sign off on the surgery.  We are still looking at surgery being several weeks away at this point as long as he doesn't have a volvus (twist in the intestines) and therefore urgently pushes surgery along (back the hell off Murphy!).  We are hoping that we can all come together for the meeting one day next week but it is so difficult to coordinate this many specialists at once in one place.

One of my greatest fears is that they get in there and find other issues.  I mean, one would think that maybe this might have to end somewhere but they keep finding new and exciting (dripping sarcasm) things 'wrong' with Braeden.  It is not going to be done laproscopically either, they will open him up above his belly button and below his ribs most likely in a horizontal line.  Dr.Brindle could do it in a lapro procedure but she said since they've got extras tagged onto the surgery and because it is going to be fairly extensive it will make it a more productive and 'safer' surgery to cut him open (stomach flipping) instead.  It makes sense really, it just sucks.  How many scars can one sweet boy acquire in his first six months of life or less??

On the positive...and yes there are some albeit they are hard to find...I do like Dr. Brindle a lot, she was very kind and drew me pictures to bring home to show and discuss with Michael.  She's done a good number of these procedures and is confident in B's success with them.  She can't (or wouldn't maybe) give me an idea of his future, she is about treating the here and now. 

It is like having two really crappy choices (surgeries or not) and having to chose the less crappy one (surgeries) with some hope that it will pay off for us (Mr.B).  How positively CRAPTASTIC!

I was going to leave the post at that but I feel like I should leave you on a positive.  The surgeries will give Braeden the possibility of thriving further than he could otherwise and (hopefully) ensure an avoidance of a extremely painful twist of his intestines not to mention get rid of his constant reflux when fed into his stomach.

The other positive is that we are holding another Blood Drive on Saturday and have another 10 spots filled with friends (and Michael) ready to hold out their arms for Mr.B.  Thank you!!  We are also in the process of holding another event in May with the hopes of 20 spots and to do another press push for Blood Donor Awareness.

In with the good, out with the bad, in with the good, out with the bad, in with the good, out with the bad, in with the good, out with the bad...and on we go.

Monday, 19 March 2012

Two Sisters in the House

Considering the excitement of the past week and a half, B's had a quiet few days.  We do however have a nice full house!  Two thirds of the Sisters are here with my nephew, Rafe, which is going by too fast already.  Of course now I have two little boys, a husband AND a sister running a fever....hmmm, not great timing on any of that.

There are many things that I need and should thank my parents for but my three big sisters are by far the most important (even if I am still the 'baby' sister).  They give me love, support and friendship and I can only hope that it will be the same for my three boys (we are seriously missing Reece {bossy booterson} and Acadia though!).

Braeden had the most wonderful play/day today.  He was awake when we arrived this morning and was just happy and content for the visit.  I think he was showing off for his Aunties!

I have a meeting tomorrow morning with the surgeon assigned to Braeden's case (intestinal malrotation) and will have a good (better?) idea tomorrow what the surgery entails and how much/many surgeries they will want to do since they will have him under anaesthetic.  We are also in the process of having a muti-disciplinary meeting sometime in the next week with the Surgery team, Cardiology, Haematology, Genetics and ENT to plan for the next few weeks.  B has another follow up 'swallow' test with the ENT on Friday and I'm looking forward (hoping!) to see the vocal cord move some more.  Mr.B's voice has gotten a wee bit stronger in the past week and I am so hoping this means that he'll get his whole voice back sooner (!) or later.

We've a busy rest of the week ahead with the scheduled meetings and tests (not to mention now sick kids at home).  Braeden is (seemingly) getting stronger after taking more than a week to recover from his Coding.  His little body was so worn out and tired that he pretty much slept the past week away.  He did slip into a fast SVT on Friday but that is the only 'blip' we've seen since re-starting his heart meds which is reassuring.  I am definitely nervous for his ENT test on Friday but all I can hope is that he is feeling strong enough to handle the stress of the testing.  The biggest positive of the test Friday is that I get to hold B in my lap while they do the scope and I will certainly voice my opinions if I feel he is too distressed.  There is a fine line of being assertive verses an over protective Mom  but I suppose it will be trial and error from here to find that line.

Wednesday, 14 March 2012

Buy One Surgery, Get Three Free

I know so many of you are not only worried about Mr.B but also about me and my own state of mind.  I am holding my own, I swear!  The crazy events of Friday didn't hit me until Sunday night when the kids were in bed, Mike was home from his weekend away and I got home from the hospital.  I was getting ready for bed when the anxiety attack hit but I was ready for it.  Anxiety is funny really for me, when I am feeling anxious I am also still completely calm in my head.  I might be hyperventilating but am still calm in my head and know that I am simply having anxiety.  I got to relax (albeit during a panic attack) and finally have a good cry with Michael there for support.  I may not be taking care of myself in the healthiest of ways (can you say emotional eating???) but I am trying to take care mentally.

Mr.B got moved upstairs on Sunday night and then proved that he was really a stinker because he started having 'Brady's' (low heart rate) almost immediately.  There was talk of shipping him back but the Dr was confident that his colour was good and he was flipping out of the shortly on his own.  I think he just wanted everyone to know he was back!  It was very nice of them to 'hold' (they didn't really) our room for us, we got back into the same room.  What are the chances?  I am still shaken up over the whole incident but I think that it is probably natural.

B's Dr down in the ICU was telling me that the surgery for the malrotation would likely be within the week but I've since been told that they will wait as long as they can for him to build up his strength again.  That is the one major thing with him since Friday, he is exhausted the poor little guy.  The surgery team want him strong to go under the anesthetic so that they can attempt to perform several procedures on him at once.  They will fix the malrotation (necessity), probably fix his umbilicus hernia (since they are in there), put in a G Tube (feeding tube into the stomach) and 'wrap' his esophogus (Fundoplication) to help prevent the reflux.  It sounds like a lot because it IS a lot.  We are having a multidisiplinary meeting next Weds with all the players with the hopes of getting a better idea on:
  1. What we want done and how it is completed
  2. Why we should agree to it 
  3. If he is strong enough to handle it all
  4. Is he going to form clots again
  5. etc etc etc
I am certainly glad that surgery isn't this week although that can change in a heartbeat if B starts having symptoms of the malrotation torquing.  He has had some bile spit ups (shouldn't really be having any with a NJ tube) in the past few days but I think they are also linked to other things.  We are also looking into how deep the NJ tube should really be, the Radiologists are not in agreence on the placement.  One put it at 55cm and the other placed it at 70cm, that's a pretty huge difference!!!

Overall Braeden is still weakened from Friday and I'm sure he'll just need the time to rebuild his strength.  He is looking better already but you can tell he's still not himself with the d-sats and the Brady's (which are most likely caused by his heart meds).

We certainly have a busy few weeks ahead of us with appointments with Neuro, ENT and our big mulit-disiplinary meeting Weds but things will be much nicer around here when two of the Sisters (and nephew) arrive on Friday night not to mention my Father-in-law the week later.

I stop and think some days that if we had one of his issues to deal with that in and of itself would be pretty stressful so what does it make it when you multiply that by 1000?  Hmmm.

Saturday, 10 March 2012

Code Blue

I don't have the energy to think of a 'title' for the blog so I'll say it like it is.  I literally lost four hours of my day yesterday in a blur of adrenaline and panic...

Braeden had his tracing test scheduled for 10:30 yesterday morning for his intestines.  The poor boy had to be off food for six hours prior so he was a bit grumpy when I got there at 9:30 am.  We had him prepped and changed over to the oxygen tank when Radiology called to say they couldn't take him...frustration.  It was the toss up to feed the kid or not or just to start an IV of fluids and wait?  Thankfully we didn't have to wait too long as they called back 15 mins later (or someone made something happen?) to say they could take him.  We trouped downstairs with his Nurse and his (the ward's) Nurse Practioner.  The test is a relatively short one and since he already had an NJ tube in it was supposed to be a fairly straight forward one.  The plan once we got there was to pull his NJ tube back to his stomach (it sits in the intestine) and run the contrast through.  The Resident said right away that she could tell that the intestine looked 'fine' to her (mistake number one).  It was five of us in the room, the Rad Resident, a Rad Nurse and the three of us from upstairs.  The contrast part was okay, he wasn't too unsettled through it due to his being strapped to a board with his arms above his head.  I was a bit keyed up simply because he was keyed up but kept pacing and breathing.  The Rad decided to have a new NJ inserted to complete the test and we all then realized she didn't know much about NJ tubes as she thought she could just advance it again. 

(NJ 101: it has a small wire in it that helps you guide it through the valves of the stomach at the top and bottom then said wire is removed once the tube is in place therefore making it near impossible to advance again as the tube is far too flexible). 

She enquired about tubing size and the NP said she could go to ICU to get the correct one but they were confident that they had it there (mistake number two).  She asked the Rad Nurse to do it who in turn asked B's nurse to do it who in turn turned to the NP and asked her to do it....who (the super smart woman she is) informed everyone that an NJ has to be inserted by an ICU nurse OR the Rad himself.  The Res left the room and I tried to comfort Mr.B as he's had enough at this point of being strapped down.  She finally came back in (after I made more than one comment about leaving a baby strapped to a board...) and proceeded to start the procedure. 

Now this is where I realize as an afterthought that I have a deficiency, when I am stressed I think  part of my brain shuts down because this is where I should have thought about the fact that she was uncertain about it and I should have asked for the Rad himself to do the procedure.  It is so frustrating that hindsight is 20/20.  I suppose in my defence you'd think that the Rad would have confidence in his Res right?  She advanced the tube and it kept bouncing in the stomach not going through and I was standing at B's feet because there is only so much room around the machine taking the photos.  Rachel (the NP) called for an immediate stop to the test and whipped the machine off him and asked for the bagger, (which ironically I handed to her as I was the closest).  She was in a flurry but did stop to say to me he was fine, just that he needed to breathe.  Oh, and he was a nice shade of blue.  The Res left during this and I tried to comfort him while noting that he was still quite pale.  He had calmed down a bit (looking  back now it wasn't a good sign he was so calm) and the Rad came in followed by his Res.  The Radiologist all but called his Resident 'stupid' because she was NOT using the right tubing (it was weighted and she needed non-weighted?) and that she wasn't doing it right.  He took over and immediately B started freaking out again, all I could hear were horrible choking sounds and gagging.  He was quick with the insertion (I'll give him that but nothing else) and then announced that his intestines were NOT positioned properly and walked out.  I don't even know if he knew I was even there, and if he did then he is more of an ass than I originally thought.  AGAIN I hate that my brain shuts down because it didn't even cross my mind even though I was SO mad to say anything because I was in fight or flight and my flight to get B to safety had kicked in.

His Ped (Dr.V) came down to meet us as we were getting B back into the crib and settled and she got the prelim results, yes B has a Intestinal Malrotation, which means surgery is certainly in our future.  I'm not sure when, through all of the craziness I didn't talk to a GI yet.

Take a deep breath, here we go:

We started out the door and the Ped looked at his monitor and saw it read heart rate as 43 so she stopped us to check him out.  She got a weak pulse (femoral) and said it was certainly faster than 43 and that he might be in SVT.  We rushed him upstairs to the 'proper' monitors and Dr.V kept feeling the pulse in the femoral and counting.  She estimated 180 and I knew that was low if he was in SVT so there was no doubt in my mind that he was.  They finally got a read on the monitor and it was over 300 beats a minute (303 is sticking in my head).  Dr.V called for ice and an IV start (as he need the IV to get Adenesine).  It wasn't so much that he was in SVT when my world stopped, it was that he stopped having the energy to breathe.  I was holding my own until Dr.V called the Code Blue in.  I started to cry and turned my back (self protection I guess) the Nurse that was with me was great, she was very concerned for me) but I was able to pull myself together and turned back around.  The world is in slow motion when you watch your child struggle for life, it really happens like it does on TV, everything just moves slowly and for a moment there is no sound.  I lost sight of B and looked around counting heads, there were 30 people in the room with us, 31 with myself.  That is not including at least 10 people outside his room.  I do remember at one point someone yelling for people that weren't needed to get out (although no one moved).  I saw a lot of familiar faces (mostly from the ICU) which was comforting and one of the Nurses working so hard on him was Deb his nurse from the day before that I liked a lot.  Braeden was limp and I watched as they desperately tried to get a line into him.  He had nurses on either side trying to get a line into him and they would get a line and it would blow (when you are in extreme distress your blood goes to your core to protect your organs).  They finally got a line, shot him with Adenesine and realilzed the line was gone, start over.  Finally they got two lines and started pushing saline into one and Adenesine (twice) into the other with the crash cart standing by to shock him if it didn't work the second time.  They did get his heart rate under 200 so that was stable enough to finish pushing the saline and he was fighting!  I saw him moving and fighting them tooth and nail, what a beautiful sight!  I do recall them giving Medazalam as well but I would like to read a report on it to see what I 'saw' is actually accurate or how much of it I missed.  I have to thank the staff Nurse's and Dr's alike that came to insure I was holding up okay, I was well taken care of and for that I am so thankful.  Whoever it was that thought to get me a cup of apple juice as things were calming down was amazing.  I didn't think I would drink it but I did and the push of sugar was well needed.  We were able to transport him downstairs with his oxygen cranked up and get him to the ICU.

He lost his lines in the transport and it took the poor nurses and Dr. another 45 mins to get another line into him.  He fought through it so that (from a Mom point of view) was good.  They kept telling him, to let them get a line in and he could come to me.  We got greeted by some of our past ICU nurses and he got visited by some of the NICU staff.  I thought as they called the Code that the poor NICU nurses would be wondering which one of 'their' babies it was.  Poor Trish his primary NICU nurse was on shift yesterday so she and Kerry (NICU Manager) came down to just lay a hand on him and make sure for themselves he was okay (and me too, thanks so much ladies).  I finally got to pick him up after the longest and yet shortest four hours of my life.  He took one look at me, whimpered and fell asleep.  While I held him I had to work hard to figure out how the heck to get Torin picked up from school.  Dr. Fruitman arrived after all the excitement full of apologies that she wasn't there (the shame for her to have other priorities and patients!).  She was talking about using the crash cart to convert him and then said she shouldn't even mention the possibilities in his presence!  She had just examined him the day before and was so happy with what she saw!  I love that she calls him a 'Bum'.  To show you how amazing nurses are, the Dr. actually asked me for the school's phone number in the midst of everything to let them know I wouldn't be there to pick up Rylan from Kindergarten.  I have so many people to thank for yesterday, the medical staff at Children's is just so amazing.  Dr.V was certainly nervous but once she found her stride she took ahold and rode it out with professionalism and grace.  Thank you as well for those of you that helped me take care of T and Ry and helped me even sort it out.  Thank you so much to Rachel for stepping up and knowing enough to take Ry home with her, feed him and even take him swimming.  Thank you to Karen for taking the time out of her life to pick T up from school (and finding the school).  Thank you Kelsey for coming early (and for her afternoon family for understanding and letting her leave early), watching the boys and clean up the kitchen, not to mention taking them on an adventure today for the day.  Thank you Kelly for babysitting last night (as Mike is out of town with work this weekend), so I could return to B and thank you Jenn and Jodi for offering to help even though it would have been an inconvenience to them and helping me problem solve through it.

It is a huge step backwards for B and for Torin as it was just too much for his little brain to sort though with having Karen pick him up and take him home but he trooped thought it, my 7 yr old Super Star.  Ry was fine with his change of plans and had a great day (which I am so thankful for)!

As for me, I'm just trying to process it all.  The addition of the intestinal issue is just so much more to take, I don't know what else is next but it terrifies me that they just keep finding things.  When I went back upstairs to clear out his room the nurses and Dr.V came in to see how I was and they all kept saying how amazing I was.  I'm not sure if amazing is the right word for an 'out of body' experience but I made it through it and for that I am thankful.

Mr.B had a good night, he slept well and hard.  He is stable and is going to be even more closely watched and they've started his Solotol (heart meds) again.  We will most likely be in the ICU for the weekend (since it's the weekend) and then hopefully attempt Unit 2 again while we wait for surgery.

I think the positives of the day are pretty apparent:
Thank you Mr.B for being such an amazing soul and such a little fighter (we'll have a chat later about this stress you are causing your Mommy and Daddy though)
Thank you to everyone who contributed to saving my child's life (yet again)
Thank you to my wonderful family, friends and support team

Wednesday, 7 March 2012

Out of Fingers and Toes

I got off the computer last night and phoned into check on Mr. B before bed and in true Braeden fashion he was having a bit of a night.  They had put Braeden down to four litres of oxygen yesterday (down from five) for the first time in weeks.  We were excited to see how it was going to shape up...well he was having issues breathing last night when I called.  They gave him some Ventolin and put him back up to the five litres.  They also put him on isolation as he was running a fever as wasn't a good sleep night for either of us last night!  When I called this morning first thing he was doing alright and had had a decent night without any SVT's so that was good.  I got to spend the day with him today (thanks to my super kind friend Rachel for taking Rylan again today) and he slept the entire day away.  He was somewhat awake this morning when I got there for his EKG and to get put on the heart halter but then crashed.  He awoke long enough to get a bum change, and I didn't even get a chance to interact with him before he'd crashed again.  Definitely not his normal.  He was also having issues with d-sating randomly today as well (when his oxygen drops for no reason and the monitor goes off) and his heart rate was dropping with his oxygen.  The 'fast' panel has come back clear for things like RSV and such but we are waiting till tomorrow for the full panel work-up to see if something (bug) is lurking.

Mike and I went up together tonight (thanks Kelsey for babysitting) and when we got there, there was a party in his room (which is never good btw).  The Paediatrician, his nurse, a second nurse and RT were all standing around him and the Ped announced how happy she was that we were there several times.  The poor nurse (who'd never had him before) was unable to settle him for over four hours and was getting really concerned.  Mike and I walked in and said hi to him and he was happy and kicking his feet!  Little Turkey!  The Ped isn't sure if it is a bug or maybe just B.  Sometimes the nurses say his lungs sound 'tight' but with chronic lung disease it can sound different and can be mistaken as 'tight'.  Anyhow we are going to have him more closely watched over night and they will do a chest xray in the morning if things are still off.  The Ped is wondering if maybe there is a bit of a collapse on the left side, which wouldn't be the first time for that either.

Mike was commenting tonight how Braeden doesn't ever really look at him and I concurred that it is the same with me.  He certainly knows who we are, he just only stares when a pretty girl comes to hold him!  Well!  As if he didn't just show off tonight to his Dad.  He and Mike had a wonderful 'play' and smile-fest while I held him!  I had tears streaming down my face from laughter and just the joy of seeing them both so enamoured with each other.  Poor B got so over stimulated though that he had a bit of a spaz out because he didn't know what to do with all the extra stimulation he'd accumulated!  Watching the smiles on both of their faces was certainly my 'joy' moment of the day.

We did have an interesting chat with the Ped Dr though, it would seem that when they were doing the xray for B's NJ tube (feeding) placement that his bowels seem a bit 'off'.  The radiologist thinks that B could have an issue with the small intestine not being attached to the abdominal wall properly in the right places.  It would certainly be easier to just draw you the diagram that the Dr drew for us.  SO, here we are, yet another thing!  This poor kid, I don't know what was going on when he was in utero!  The Ped Dr is curious that when he was diagnosed with possible necrosis (in the intestines back when he was only two weeks old) that maybe it was a twist, not nec.  Who knows.  They are going to put dye down in through his stomach and do a series of scans to trace his intestines but they can't do it right now with the NJ tube as it goes into his intestine, not stomach.  The plan is the next time Mr.B pulls out his NJ tube (which he will inevitably do), they will do the scan then since they've got the tube out and have to replace it anyhow.  Of course if something comes up in the meantime to lean more towards a possible twist or such they will do it sooner rather than wait.  Maybe I took too many prenatals, maybe not enough???  All I know is that I'm out of fingers and toes to count this kid's issues.

Let's hope for a clear panel tomorrow so we can lift the isolation and that maybe he was just having an 'off' couple of days.  This Momma has certainly had her fair share of drama and we are only on Wednesday!

Tuesday, 6 March 2012

S-V-T 1-2-3

Is it really only Tuesday??

I know I'm tired when I can fall asleep anywhere and anytime but sometimes life is just so not funny that it is 'sit your butt down and laugh so you don't cry' funny. 

I've been burning the candle at both ends for awhile now and there are things that just don't get done regularly right now, housework being one of them.  It's not like the place is that bad, it just gets done in the hours after the other two go to bed so when I came home for a brief lunch with Ry yesterday let me tell you how unpleasantly surprised I was when I found brown smear marks around the house.  There are many downsides to having geriatric cats, one of them being the ability to properly use a litter box in cold, snowy weather.  (Keep in mind the litter box was just cleaned the night before)  One of my darling (not what I called her yesterday) cats got some poop stuck on her and proceeded to try to get it off, on the carpet, on the couch, on the bathmat...yes.  Do you laugh, cry or scream??

My other 'funny' moment that wasn't really funny is actually about Braeden.  I chose to go and get my grocery shopping done this morning instead of my usual drop the kids at school and race to the hospital for an hour and a half (it was 10% Tues after all).  I was feeling guilty about it (of course) so when I walked in this afternoon I saw our favourite Cardiologist at the Nurse's station and told her about my guilt.  We had a little laugh and she told me that she was missing Braeden but didn't have the time to have a visit with him today as she was so busy, and she was feeling a bit guilty about it (sense a theme yet?).  I told her that it isn't a bad thing to be low on the Cardio's list and she told me that she would be around Thursday and would come and see him then.  I walked down the hall to Mr.B's room and followed a nurse in because his alarm was going off.  No big deal, they go off all the time and he's generally fine.  He was being held by a very nice Volunteer and looked great to me.  The next thing I know Dr. Fruitman is standing next to me telling me that B was having an SVT.  For the love of Pete (whoever you are Pete!)!  Dr.F literally walked past the monitors at the Nurse's station and caught B's SVT out of the corner of her eye.  As she walked back up to the station to print it off he flipped up again, just to prove to me he could I think!

So here we are, back to the SVT's again (this is the tachycardia or rapid heart rate in case you've forgotten).  It's funny because I saw the monitor flip up the other day but didn't think anything of it as the leads aren't exactly reliable when the babies are moving.  Moral of the story?  Don't tell Braeden that you don't have time for him, he'll make you have it!  Little Turkey!  The Nurses were in a bit of a flurry about it, I guess they don't see many of them on the Respiratory ward!  He's now got to wear a 'halter' (extra leads that measure and record his heart rate for 24 hrs), for the next 24 hrs, we've got ice on standby as well as the Adenisine (drug to bring him out)...though now that I am typing that I don't know how they would administer the drug without an IV...hmmm.  Dr.F doesn't want to jump the gun and medicate him just yet until we know for sure how many 'runs' he's actually having.  It goes to show how amazing she is that she caught it at all as it was only for a minute.  It's NOT life threatening, it has nothing to do with his heart surgery, his heart looks good and strong, it IS just Braeden.  If we do have to go the meds route then he'll be medicated for a few months then taken off and we'll see if he's outgrown it.  Basically he's telling me not to get too comfy just yet!

Dr.F and I did have quite the laugh about it (sometimes when it comes to B I have to laugh so that I don't pull my hair out), he is just not one to take 'no' for an answer!  I told her (tongue in cheek) it was because I missed my morning with him and she told me it was because she wasn't going to come and see him.  It has been this way for 4 months (tomorrow), he has uncanny timing for things!

So big day tomorrow, Mr.B is 4 mths old tomorrow!  I realized today that he could very well start teething soon!  Yikes.  If you'd asked me back in October if I would believe that we'd still be in hospital in March (without an end date in sight mind you) I would have thought that it would be 'unsurvivable'.  It is sometimes a good thing to not have that crystal ball. 

One foot, one step, one day at a time.

Thursday, 1 March 2012

Say What You've Gotta Say!

What a week!  It is official, I need a wife!  I have survived my first full week without help (aka my Mother) but man has it been difficult!

Meeting Erin, professional Snuggler
Last Friday: Had to take the cat to the vet (oh yes, three medically dependent geriatric cats on top of everything else) before taking the kids to school.  So kids dressed in winter items, cat in carrier yowling her fool head off and trying to break through the metal bars at my front door when I realize, 'oooops!' I didn't pack Torin a lunch or Rylan his snacks! Gak!

Looking  back on the week now, the house is a disaster (don't tell health Canada), the laundry is in piles (clean at least), the walk and driveway did get shoveled when needed, I did spent a minimum of four hours a day at the hospital and the kids were all fed and loved.  Sounds like success to me!  I do have to admit that I might not have been in the happiest of moods throughout it though, I'm just sayin!  Thank you Tonda for the mid-week dinner and treats, it was a great help!

Hello Tonda!
Mr.B has had a fairly uneventful week (should I be crossing my fingers as I type this?), we did switch over to the NJ tube feedings from the NG however.  He's been having issues with reflux more and more and they've had him on a drug for it but it's not really preventing it.  When you've got weak lungs they need to be protected from reflux so the choice for the NJ I think is a good one although it is technically a step backwards.  The NG tube goes in through the nose and into the stomach and stays there whereas the NJ tube looks the same but goes right into the small intestine and has to be viewed via xray for proper placement.  He has to be on continuous feeds (which he already was) for an NJ tube because the intestine isn't designed to digest food really.  He seems to be taking to it alright, not much of a change for him really just more so the process in which to put it in.  We've only pulled it out once so far...I am hoping that B's trend of ripping things out of his nose might slow down but it could be a long shot.  He's got his poor little hands covered 24/7 unless I am giving him tactile sensation to try to be a bit more preventative with the pulling.

New Tumble Form therapy seat
We also got a good jump on his OT and Physio this week which is really exciting for me.  I am all over the therapy process people, I KNOW it works!  I quite like both the OT and Physio ladies and they had some great things for me to do to try to get a bit more stimulation out of him.  He loves is new therapy chair and gets quite exhausted after 10 mins or so but it is a good workout for him.  We are pretty much working on the baby basics and he is already impressing his therapists.  I asked if they had seen him on his tummy to judge his neck strength and they had not.  So I flipped him over and my big strong boy lifted his head up and took a good look around shocking the therapist!  She didn't think he'd be ready for tummy time let alone be able to raise his head!  What a Superstar!!  This kid is going to get any therapies and monies available to him and I'm not sitting and waiting for it to come to us (which it doesn't FYI).

It has been a brutal week but a rewarding one too in the sense that I can do this, I just can't do it ALL.  I'm sure T and Ry are in for more 'grumpy Mommy' but hey, this house doesn't clean itself ya know (um yeah, I did just say that Mom!).  We did have a ladybug in the kitchen today as well, maybe spring isn't too far off?  I'm not holding my breath on that one though, we should still have a pretty serious amount of snowfall still.

The week did have a pretty spectacular end to it tonight though (I'm talking as though it is Friday as the kids are off school tomorrow), the boys had a theatre group in residence in their school this week so we got to see the 'play' the kids wrote and performed tonight.  I have two words to describe it "Hi Mommy" in the middle of lines is the BEST!  So very proud of both of my theatrical boys, they must come by it honestly!  It's all from Mike I swear (Ha ha ha for those of you that know my very low key husband!).

T's big role
We have a great start to a Blood Drive in Nanaimo on April 11th too, one of my wonderful besties Kiran is in the process of organizing it.  Kiran is an overachiever in the best possible ways so I know it will be a wonderful success!

Our third Calgary Blood Drive is already in the process as well, it will take place on March 24th.  Our spots are filled up already I believe but you can always call 1-888-2donate to join us.  For those of you that have already donated in the past few months in Braeden's name, can you please mssg (or leave a mssg on here or FB) me to let me know again so that I can get a more accurate count please?  I believe we are close to 30 donations now but would love an accurate number heading into our third drive.

So I've also made the decision this week to go big or go home when it comes to spreading the word about the positives and necessities of blood donation, I've contacted the Ellen show with the hopes that she might do a small piece on it.  I figured that I really have nothing to lose!  So what if it never gets looked at, I can say that I've tried!  If any of you want to help me out in this quest please feel free to write her a short email talking about the cause, message Ellen and/or post on her FB page and who knows?  Crazy things can happen if you put yourself out there!!!

"Be still when you have nothing to say; when genuine passion moves you, say what you've got to say, and say it hot." D. H. Lawrence