Out of the Hole and Through the Dark Forest

I literally was on my way out the door last night to get a few hours sleep when I noticed B's heart rate (arrhythmia) was 'odd'.  I called in his Nurse and she watched the monitor, saw what I saw and then checked his heart with the stethoscope and heard what I heard.

My heart was in my throat, what now??  It wasn't happening often, just every once in awhile and I knew both the night Nurse and the Charge Nurse would watch it closely so I came home feeling so ill.  I was so far past exhausted and so sick with worry that I knew if I didn't at least lay down I was going to be useless today.

I may have called the hospital once or twice from home but I did come home and laid in a quiet bed for a few consecutive hours.  I told my husband that I hadn't heard him leave this morning and he laughed saying that we'd had a conversation...oops.  I asked what about and he said that I was wondering where I was...yup, sleep deprivation is not a good thing.

It was a rough start to the day (lots of tired Momma tears) and I spent the good part of the morning/afternoon watching B's monitor as it repeatedly beeped off 'irregular heartrate'.  As the day progress so did the frequency of the irregularities. It got to the point where his heart rate was 'normal' only a fraction of the time it was 'irregular'. His rates were jumping from 120's and down to the 80's and back up again.  When he started sitting in the 60's I got my annoyed Momma pants on and stomped my foot a bit.  No one could give me an answer to what we were looking at until we had an ECG done and no one could give me and ECG because the ward was so busy.

I was trying to be so patient as I knew that the Residents were busy but when his heart rate wasn't coming up from the 60's or 70's I was starting to really get worried (he usually sits around 120 when he's awake).  His Nurse was trying really hard to get the ECG done and tracked down the Resident we needed.

We got the leads on and she kept them on for over 5 mins trying to get the best reads.  She wasn't overly concerned but I was still very concerned, this is a very ill child with two Congential Heart Defects that has been on a tonne of drugs over the past few days. 

At the end of the ECG Dr.V actually poked her head in the room since she'd seen B was still admitted and we'd not seen her since Emerge.  All it took was a 5 min conversation with her and my stress decreased dramatically.

It's hard to get a heart rate when it's in your hands little boy

Long story short, B's 'waves and bumps' are where the need to be on the ECG but his heart rate is just in a Brachycardia state (very low heart rate).  That's the extreme opposite of what we are used to, B's usually at risk for Tachycardia for pete's sake!!  They believe the cause is from all of the hard core steroids the are administering him right now to keep his lung function up.  We've gone down to doing 5 puffs of ventolin every 2 hours now (instead of hourly) and with that difference it isn't yanking his heart rate up to balance out the steroids taking it down...something like that.

Cardiology with review it in the morning and we'll go from there.  In the meantime he's being watched.

The other main issue that we're having is that B's been unable to feed for over three days now.  We started running Pedialyte yesterday with no success and to even put meds and a flush through his g-tube is causing him discomfort.  It was suggested today that we put an NJ tube in (through the nose into the intestines) to which the Dr got a very loud 'nope' from me.  We've been there, and done that.  Not to mention the kid is maxed out on oxygen and yet we want to plug up one of his nostrils why??  They decided that we'd revisit it tomorrow and I asked for TPN to be started since we've got a decent IV. 

It took my 5 min conversation with Dr.V to get that TPN order in and started! Yay!  Within 2 hours, I kid you not, we had our B back.  He's exhausted and his lungs are still very bad but his personality was back...big Momma tears.

As I told my mother-in-law tonight, we are not out of the woods by any means but at least we're out of this huge hole for now and can start to move forward (I hope).

Rachel watching over our B
 

I am feeling the most relaxed that I've been in a week (which isn't saying much really) but some of that has to do with B being, well B and for the 5 hours that my friend Rachel came and just spent with me, beside me.  My children were well tended to today with Kelsey taking them on a grand adventure and for Justine for covering off time at ACH again this morning (on her other day off!).

Out of the hole and through the dark forest...

Click here to the Facebook Page for the cutest video of our B 'purring'...

Yay for TPN!

From Our Home (Unit 2) To Yours... 

Waiting For the Shoe to Drop

I hate sitting here waiting for the other shoe to drop...I feel like we are sitting on the edge of our seats here.

I didn't quite realize how much stress can come across in a photo

B had a decent morning but again this afternoon he got very lethargic and (mostly) unresponsive for over 5 hours.  Everyone keeps reminding me that he's tired and I get that, he's exhausted naturally but I can't stop my 'spidey senses' that there is something more in the picture here.  He doesn't want to be held, he doesn't want his Momma and he was completely unresponsive to his big brothers when they came into his room.  Maybe I'm wrong, I'd certainly be happy to be wrong.


I finally asked for a CBC (blood work) to be done and a blood gas since he's so tired and having desats again.  Blood work isn't any worse nor is his blood gas, which is great but now his blood pressure is up tonight.


I just changed his bum (I've got cold hands), his Nurse did his full assessment and I gave him his 5 puffs of ventolin all with no real response from him (cried when I started the ventolin because it is on his face).


They did start a run of Pedialyte in his g-tube this afternoon (only 10mls an hour) but he was having none of it.  He was pulling at his g-tube and crying, it just hurts to have anything in his tummy.  We also went from straight drainage (g-tube open to drain) to having food put in with no time in between to clamp him.  Kinda missed that step of clamping off the tube to see if he can even handle his own secretions in his tummy (didn't even cross my mind).  So food (Pedialyte) is stopped for now and I've asked about TPN (IV nutrition).  I'm not keen on TPN, it's not great but he needs something.  My poor boy has been without food for three days and is rapidly losing weight (again).


He's still working very hard to breathe (indrawing and nasal flaring) so he's burning up calories there too.  It's not been decided if the ventolin is really making that much of a difference so we've pushed it back to every 2 hours (as opposed to hourly) so we'll see through the night if it makes a difference. I'm not expecting a dramatic improvement but I get very concerned when B has no personality aside from whining in discomfort or just sleeping through everything.


None of this helps as well when my own gas tank is empty.  I'm trying to get rest but when B's ill my brain doesn't shut down for very long to let me truly 'rest' (not to mention he's checked every 1/2hr when I'm at the hospital).  I'm trying to take care of myself through this, I'm trying to ask for help (thank you so much to Justine for working today, for Lorna for the goodies and feeding my children and Sumyu for the enchiladas in my oven).


Please keep our sweet boy in your thoughts.  He's such a strong kiddo but even the strongest need to rest at times too.  My greatest fear (in this moment at least) is that he'll continue to be pushed (working hard to breathe) on the 3 litres and finally just crash because his little body is so tired.  I'm trying to be positive, think positively but I'm know I'm certainly stressed and exhausted.


I hate when I get like this because poor Rylan gets the brunt of my Mommy grumpies.  He's just being a 7 yr old boy but his Momma has no patience for it (which is not good for Momma guilt when reflecting on another long day).  So please too keep our sweet Rylie in your thoughts he just trying to be a kid even though he's missing his brother.


Our guardian of a big brother Torin is struggling with not having his Mr.B at home.  Torin is fiercely protective over B and is our Mr.B whisperer.  There's been many tears over the past few days so I know that this too is taking a toll on him.  Please keep our protector T in your thoughts too, he needs some lifting up.


Another long sleepless night ahead but there is hope in my heart that tomorrow is another day, a better day.

From Our (Exhausted) Home (Unit 2) To Yours...

RSV, Adenovirus, AND EnteroRhino...SPEECHLESS

Those of you that have followed us for some time (some since the beginning), thank you and those of you that are just joining us, thank you.  What those of you that have been following for awhile will know and what those of you that are new will find out is that this child is a Boy Wonder in every sense of the word.  At some point I hope he'll realize he doesn't need to challenge Dr's around every corner he turns.

Emerge entertainment

We got Mr.B's viral panel back late yesterday afternoon.  One would think (as I thought) that I would feel relief knowing what we are dealing with...(you might want to sit for this or be away from small children because you might let a bad word out!)...

Mr.B tested positive for:

Respiratory Syncytial Virus (RSV)

RSV (respiratory syncytial virus) is a virus that infects the lungs and airways (breathing passages). RSV can affect anyone of any age, but it's most common in infants and young children. In fact, it's so common that almost all children have been infected with RSV by the age of three.
RSV is usually a mild disease that goes away on its own. In very young children RSV can sometimes lead to serious infections like pneumonia or bronchiolitis (a swelling of the bronchioles — the smallest air passages of the lungs).
 
Warning signs of a serious RSV infection
These signs may mean your child has a more serious case of RSV. Get emergency help right away if your child has:

• trouble breathing (check)
• fast, rapid breathing (check)
• wheezing (check)
• deeper and more frequent coughing (check)
• blue lips or fingernails (check)
• dehydration (check)
• difficulty breast feeding or bottle-feeding (check, g-tube feeding)

Most children with RSV who are sick enough to go to the hospital are either very young (infants) or have an underlying health condition, like heart or lung disease.


AND...

Adenovirus:

Adenoviruses are a group of viruses that can infect the membranes (tissue linings) of the respiratory tract, eyes, intestines, and urinary tract. They account for about 10% of acute respiratory infections in kids and are a frequent cause of diarrhea.
 
Depending on which part of the body is affected, the signs and symptoms of adenoviral infections vary:
 
Febrile respiratory disease (check), an infection with fever of the respiratory tract, is the most common result of adenoviral infection in kids. .
Adenovirus often affects the lower respiratory tract as well (check), causing bronchiolitis, croup, or viral pneumonia, which is less common but can cause serious illness in infants. Adenovirus can also produce a dry, harsh cough that can resemble whooping cough (pertussis) (check).
Gastroenteritis (check) is an inflammation of the stomach and the small and large intestines. Symptoms include watery diarrhea, vomiting, headache, fever, and abdominal cramps.
Genitourinary infections (check, B's lack of urine output): Urinary tract infections can cause frequent urination, burning, pain, and blood in the urine. Adenoviruses are also known to cause a condition called hemorrhagic cystitis, which is characterized by blood in the urine.
AND MORE...


AND...

Entero Rhinovirus:
(this is the lovely virus that ended us up in PICU a year and a bit ago on a ventilator for 10 days, with another three weeks in hospital)

More than any other illness, rhinoviruses (rhin means “nose”) are associated with the common cold. Rhinoviruses may also cause some sore throats, ear infections, sinus infections, and to a lesser degree, pneumonia and bronchiolitis (infection of the small breathing passages of the lungs).
 

Children may also develop symptoms such as

• Sneezing (check)
• A mild fever (101°F–102°F or 38.3°C–38.9°C) (check)
• Headaches (probably, check)
• Sore throat (check)
• Cough (check)
• Muscle aches  (check)
• A decrease in appetite (check)

 

How? How? How does ONE child (Mr. Talented B) end up with ALL THREE at ONCE???

 

We've always known that B does things in his own way, on his own time but man, this one has stumped me!  Having ONE of these would stress me out, having all three?  Off the charts.

 

What does this mean?  Well it means that B is one sick kiddo and that we've got a very long haul (is the assumption) back to wellness ahead of us.  His body is obviously very tired and very run down right now.

 

The AMAZING news?  He's doing better in terms of moving some air in his lungs.  He's able to maintain his sats for the most part on the three litres of oxygen and he's finally responding to the non-stop (every hour) ventolin boluses.  He still is really only using one lung for most of the work (due to the illnesses clogging his lungs) but he's doing it.

 

He had another long night in terms of lack of sleep but he didn't need any other intervention (like c-pap or more).  The STEP (ICU) Team was happy with what they saw at 1am (and again at 6am).  They are even at the point that they are considering discharging him (from ICU care only) this afternoon.

 

We're not out of the woods by any stretch, it is very possible for this to turn again on us on a dime, but for now, there is hope in my heart.

 

The fact that B is fighting all three of these and (seemingly) winning?  Well it makes the tears fall freely down my face.  Any one of these viruses could set him back months and to be fighting all three back with a vengeance?  This child astounds me.

This is about the right energy level...

Thank you everyone for your continued support and encouragement.  Thank you to those of you that have gone over and above to care for us (again) through another one of our hurdles (Laine K, Kristina Mc, June (Kelsey) O, Lorna Z,  Ashley (and Rene) R. and Tara (and Lorraine) A.  I can't tell you (again) how blessed we are for those of you that offer us help in our times of need, so many of you go over and above.  Thank you, thank you, thank you.

 

From Our (Stressed Out Unit 2/ICU Bed) Home To Yours...

My Sweet Sick Boy

My Dear Mr.B,


I know it's been a month since I last left you a message to your future self on here and it's not for a lack of happenings, just more for a lack of time (I'll write an update post and pictures of our adventures in the past month I'm sure).


What sucks is that I have time now because you are laying beside me in your hospital bed, struggling to breathe.  It's been a long time little Love since your Momma has been this worried about you.  I don't know how it is that after more than two years you can still catch us all so off guard!


I brought you in on Monday to Emerge because you were visibly struggling and working harder to breathe.  I dropped the big boys off at school and brought you into Emerge. *You know you are a parent of a complex care kid when you do other things that need to get done in life first before coming into Emergency* It was pretty clear pretty quick that you needed to be admitted but what wasn't clear was where to put you because (once again) the hospital was 'full'.  We did get our expected diagnosis of pneumonia and we did our 12 hour stint in order to get a bed up on our Unit 2.


Aside from not peeing for such long stretch of time and working a bit harder to breathe, you actually didn't look/sound that bad.  They did start you on IV antibiotics (5 IV's later in Emerge) and Tamaflu to cover all of your bases.


We cruised through Tuesday and Wednesday thinking that the illness would 'peak' and pass.  We even had a good day yesterday and you actually got enough of a burst of energy to get up and play on your knees in the crib for short bursts.  I made the mistake (?) of even announcing that we seemingly hit out peak and you were rounding the corner (to health).


We certainly rounded a corner last night but it was not one to health at all, the direct opposite.  As I said my little duck, it's been a long time since I've been this worried about you.  You got really sick really quite fast (over a few hours) last night and had your night team jumping all night.  I knew by 11pm last night that we were certainly in troubled waters and that we'd most likely be headed downstairs to the PICU.


The ICU team did watch you as well overnight but they were confident that Unit 2 was still an okay place to be (even though you are maxed out on your oxygen here).  We got kind of mixed reviews on what your chest x ray showed.  PICU thought it was more a showing of very nasty pneumonia but the Unit thought that maybe we were looking at a pneumothorax. Neither were particularly promising but we couldn't be sure until Radiology had a look at your film.  I knew how very ill you felt because you've not really fought any of your xrays or tests (and blood gases are awful!).


You are getting round the clock ventolin (5 puffs every hour), IV steroids now and a new, bigger antibiotic.  Through all of this there has really been no significant change.  We do know now it is an awful, vicious pneumonia but we still don't know the type.  It's frustrating to me that they did all of the bloodwork and such on Monday and we still don't have our 'bacteria' or 'virus' cause.  I don't know why I feel like I need a name, I just do.  It won't change the protocol but at least I can give this awfulness a name and can direct some energy towards that.


It's been a very long time since I've seen you this sick, this pale and this unresponsive at times.  What I need you to do now Sweet Boy is to tell this bug who is in charge and to take a hike.


You are still sitting on the cusp of ICU and still very much in the scary zone.  My biggest fear is that your little body will just get simply too tired to keep going and you'll end up intubated.  I'd much rather put you (torture) on C-pap or even a ventilator then wait too long and have to intubate you because your little body gets too tired.


All we can hope is that time is on our side, that you'll fight this bug with all that Superhero B strength.  You still amaze me while you are so ill that you can still do your nose scrunchers and funny faces for your favourite docs.


Love your biggest fan, your Momma

From Our Home (Unit 2/ICU) To Yours...

Doing Our Part...

Another three week gap, I know, I know!  My phone is ringing and I've had people stopping to see if we are okay.  We are okay (thank you for asking) it is just something about this time of year that I find it hard to find the time to sit and write.  On the good news side of things, you're about to get a photo bomb here! :)


Some Araya lovin'!

I'm also embarking on a brand new adventure, I'm trying to take care of myself!  It's a bit of a shock to the system, but hey, at least I'm trying!

Doing some physio, heavy lifting!

We are officially one month free of an admission!!!  Yahoo!  It feels as though it's been an non-stop, ongoing admission after admission since June.  I think we ended up with 10 in all in the last 7 mths which is nuts!  We've been just enjoying life at home (although of course we are still at ACH multiple times a week for appointments).

The second half of January was big month for us with

Water Baby!
 

appointments and starting new things!  Mr.B started water therapy over at the ACH therapy pool (a wee indoor pool for Special Needs kiddos).  As we all know, B LOVES the water and he's certainly enjoying the class!  He's not at all thrilled with the 'group participation' part of the class but he's happy as a little fish to 'swim' with Justine.  He's even got an amazing little froggy kick going on.  I can already see a difference after only 4 classes in his strength!  It's pretty astounding how doing the water therapy combined with therapies at home how much he's grown in strength.  Wait for it...B is now able to STAND for about 10 seconds (while his little legs shake like mad!) while holding onto the edge of his crib.  It is so heart wrenching to witness!  I even had him 'stand' at the edge of our dining room table tonight for a few seconds and we could see the light bulb go off in his head when he realized he could see what was on the table!  Hilarious!  And I already thought he was into everything...  People keep saying he'll be walking soon, and I love their enthusiasm, but he still has a great deal of strength and balance to build before walking will happen.  I have NO doubt in my mind that he will in fact walk but he'll do it on 'B' time.


I'm STANDING!!!!!  This is HUGE!!!!!

Crammed between a purse and a feeding tube bag...but I'm sitting in a cart!!

Big sitter!

The other outstanding news is Mr.B's language is taking off!  He is consistently saying 'Hi', 'Mama' and 'Bye-bye'.  He's not using thing contextually just yet but hey, he's SPEAKING!  When you have a child with an almost paralyzed vocal cord that is now making real words, anything is possible!  As with the physical, he's gonna do it all on his own timeline.  He is absorbing sign language more and more each and every day he works with Justine and starting to be consistent with some signs as well.   I believe SO strongly in the power of teaching all children sign language, it was both Torin and Rylan's first language.  Being as T was pretty much non-verbal until he was 4 1/2 it was started out of necessity but with Rylan it was used because we were using it with T and it worked (and they are only 1 1/2 yrs apart in age).  The ironic thing however is all of the sign language that I learned with/for the big boys was all around food for the most part!  How hard is it to communicate with a two year old what he wants to eat?  Sign language took all of that frustration away for us!  Now here I am with a boy who is completely g-tube fed and has no interest in food!  Thanks universe!  Ah well, it is just as good for me as it is for B to learn new signs.  Good thing for us Justine is a qualified Sign Language Interpreter!



Working hard in my standing frame!

We did also get into see the Sleep Physician (finally) this month but it was somewhat disappointing.  I don't know what I was expecting but I was sincerely hoping for some sort of 'coping' strategies or something.  From our two overnight sleep studies (that are done at ACH) we know that he wakes every 45mins to 1hr and that he has mild apnea (yay).  The biggest problem is (and has been for over a year now) is that there is no reason for his waking that we can find.  I found myself trying really hard to not get defensive and listen to what she had to say but it was hard!  He's not a 'typical' kid that doesn't sleep, he is a child that has had to endure severe traumas and never ending pain.  I can't let him 'cry it out', he'll not only turn blue but also start to retch (he can't vomit remember) and then I've gone from a crying baby to a child that needs medical intervention.  I could go on and on about his sleep habits and lack of any kind of rhyme or reason to it all but it would take all night.  We are coping, I do have Justine's help for this exact reason so I can get some sleep during the day when she's here but it's certainly not ideal.  Nevertheless I will do as she asked (the sleep Dr) and write down what I do each night for three weeks, not B but me.

We also saw the Eye Surgeon in January for our surgery follow-up to which we got (dripping with acidic sarcasm) the news that he'd need a second eye surgery. Wow, shocker.  I enquired again to why he didn't do the 'other' procedure (that I swear we discussed) instead of this one that he did do but he again reassured (not) me that the other surgery (that he now needs!!!) is only ever a 'Plan B' surgery.  SIGH.  I am in NO rush to get another eye surgery for him as long as his left eye stays open as much as it does and the vision doesn't start to get affected or the eye gets 'lazy'.  So very frustrating.  Of all the times I didn't have a second person in the initial consult with me...

The last bit of January was also a time of great reflection.  I was asked to speak about an experience in the NICU to a group of people.  It is part of the Patient and Family Centred Care at ACH and the series is called 'Patient and Family Rounds'.  They generally have a Patient/Family member and a staff member talk about an experience.  Since Trish (one of B's Primary NICU Nurses) and I still have a great relationship I asked her if she'd be willing to speak with me.  Luckily she agreed!  Before our talk though I took some time to reflect back on the NICU part of our journey and re-read some of the early blog posts.  IT WAS SO HARD.  I find it hard to go back to that time of profound helplessness and fear not to mention how in shock we all were by the events taking place.  There is simply nothing (not even a 5 day NICU stay with our oldest son) that could prepare you for a NICU stay with a critical and extremely complex preemie that no one could possibly diagnose.  It's not like B just had one thing, it was one thing on top of another, on top of another, on top of another, and so on.  The fact that he's still undiagnosed gives you an idea of our helplessness at that time.

This picture now holds even more meaning and emotion for me...

I've also known for a long time now (but didn't back then) that B was not expected to make it.   That didn't come as a surprise when I found out some months later, the child was Septic and with Meningitis (not to mention the strokes, seizures and so on).  We had our discussion about how much medical intervention we were willing to take because his organs were shutting down and they were prepared to start dialysis.  What I didn't know is that one of the photos of our journey that I cherish so much now has a completely new meaning for me.  It is the photo of me holding B for the first time that he went Septic and I was terrified to hold him.  He was in agony due to all of the swelling in his stretched out little body and attached to more wires/tubes then I could count.  I didn't really want to hold him that day, I was so scared of just causing him more pain but I relented when Trish pushed me to hold him, insisting it would be good for us both.  What I found out last week is that both Trish and his other Primary NICU Nurse Suzie fought for me to hold him that day because they didn't think he'd survive and they wanted me to have the time to hold my sweet, precious child a few more times while he was still alive.  Doesn't that take your breath away?  I am SO thankful that I did hold him that day and it gave me back some of my confidence that I was in fact his Momma and that he was mine.

We did make it through most of the talk without too many tears although I certainly teared up on more than one occasion.  Patient and Family Centred Care has become a burning passion of mine, it needs to be heard and it needs to be put first and foremost in our medical system.  It is the reason why I sit on the Networks with Alberta Health Systems that I do, I am driven to try to make a difference for all the families that will follow in similar footsteps to ours.

I'm very blessed as well to have been asked by Trish to speak in March to a group of NICU Nurses again about this topic.  Trish and I will again present as a pair and talk about our journey with Mr.B in the NICU.

We also got to go out and put in the donations that Torin collected for his 9th Birthday for Alberta Children's Hospital.  I'm SO proud of both of my boys for their willingness to raise money for something that they both feel is important!

There are a couple of important things happening this week around the world as well.  This week is not only Congenital Heart Defect Awareness but also Feeding Tube Awareness.  Well since B has both (and both are life threatening/saving issues for him) we decided to go all out and do a Rockin' photo shoot to raise awareness.  We also created a short video vinette for TinySuperheroes (the makers of the AMAZING red cape you see in the shots) to raise awareness for CHD as well as a photo contest for Mended Little Hearts (click HERE to vote).  Justine and I had a great deal of fun getting B's haircut into a Mohawk (as you can see he wasn't thrilled) and spraying it red.  These are photos that I'll cherish for all time!  I had to include so many because there are just so many to choose from!



Not happy about this haircut thing!!

The other part of reflection that has come for me is that we just finished our Radiothon for ACH this past week.  The people of Calgary (this GREAT city) and surrounding areas of Alberta raised over 1.95 MILLION dollars in the three day Radiothon.  That means more state of the art equipment for our amazing hospital among other things.  It was a different experience being on the 'outside' of it this year (we were a part of it last year) but wonderful with hearing other's stories that we've gotten to know.  It is a three day cry-a-thon for me but it is empowering as well!  I am thankful for so many things but being Canadian, being Albertan (I was actually born in Calgary although I grew up on the West Coast for the most part) and living in this great city of Calgary with the best care in the world only a 10 minute drive away from us.

 

From Our Home To Yours...