Goodbye Summer, Hello Enterovirus 68

This Blog was written on Monday, September 21

I cannot believe how quickly the summer has gone and passed us by.  Gone are the days of no suctioning, no fevers and easy nights.  Hello to sleepless nights, spiking fevers and suctioning.

I thought the pebbles that Wyatt had swallowed back at the end of August was hard on us, but this virus... has been kicking all of our butts.  Every person in our house has caught it, except for the dog.  And I'm pretty sure if it was contagious from humans to animals, she would have already caught it!  The pebble incident, albeit serious in nature, (he could have lost his airway at any moment), was in the end a very short stay at CHEO.  We were admitted at 6 pm on a Thursday night and we were discharged by 12 pm on Friday.  Wyatt had to go in for an emergency intubation, so his anesthesiologist, Dr. Corvo, could remove one tiny little pebble lying against his vocal cords.  Do you know what sits right in front of your vocal cords? Your wind pipes.  That is why the pebble incident was so dangerous.  At any given moment, Wyatt could have lost his airway.  For more details on this day, please jump to Wyatt's Anesthesiologist's page.

What I'm trying to get at here, is that although the Pebble Incident was incredibly stressful, it was short lived.  This virus though, has left me stressed out, sick, exhausted and it's just the beginning of the virus season.  Do you know when CHEO typically starts seeing the Enterovirus 68?  Usually in January-February, and yes, they may get a few cases here and there beforehand, but an outbreak??  Unlikely, you'd think.  Right now, CHEO has several cases of the virus, and the testing only began last week.   The good news is that the virus is only dangerous for those who are under the age of 5, and/or have asthma.

Did I mention I have three children under the age of 5, two of them having asthma?

And it's just the beginning of the virus season. Oie.

Aila has been sick since the first day of school, and Jude... two days after school started, he started showing signs of coming down with a cold. Coughing, fever, runny nose and the like.  Wyatt was admitted to CHEO for a severe ear infection during this period of their colds, so it's unlikely they had the same thing.  But now...now, all of their symptoms are the same, and have occured staggartly.  One child became more ill after the other.  My daughter, she's now going week 4 of being in school, and is just now showing signs of getting better.  Our middle child is still coughing, but at least it's not all day long - like his mother.  And poor little Wyatt, is in the hospital, getting a chest xray.  He's been off and on febrile for the last week, coughing during the night (which in turn makes his O2 drop, and heart rate increase), and isn't tolerating his feeds.

Notice Wyatt's eyebrows are raised in that "surprised" look of his. He's in need of an adjustment!

Last night for instance, I was up with him from 10:00 pm to 5:30 am, and my only goal was to make him comfortable.  His heart rate was high, he was sitting at 150 by 1 am.  His O2 fluctuated from 88 to 94%, so his monitor was going off every 15 minutes or so.  Once his O2 dropped I would suction, and reposition.  This would help him settle for about 15 minutes, and then he would drop again.  Every time he would drop, his heart rate would increase, (because he's working harder to breath), so it was a stressful night!  By the time I handed him over to dad, (5:30 am), his heart rate was at 140, and 91% for O2.   By 7:30, when we were leaving for CHEO, he was at 175, and 88%.  So...I guess it's a good thing he's where he is.  He'll be safe there, and they have the proper equipment to take care of him.  And for those of you who are wondering what his norm is: while sleeping, Wyatt's heart rate should be between 95-115, and when awake 120-140.  His O2 should always be between 98-100%.

I have nursing care, but it's not on a full time basis. I'm thinking now Wyatt's care needs to be re-assessed.

What do you think? Do you think it's safe for mom to go without sleep a couple of days in a row?

Parenting 101: Swallowing; and Prerequisite to Parenting 102: Opening the Mouth

For those of you who have been keeping track of Wyatt's progress over the past months, you may have deduced that we haven't been in CHEO for quite some time - if we negate his visit from three weeks ago, a short one-day stint at CHEO for swallowing pebbles (a blog in itself). We have been CHEO-free for almost nine weeks! That was three weeks longer than our last stint, which was in December of 2013 to mid January 2014.

The connection between the two? Well, our beautiful kids were not in school.

School is the reason why Wyatt becomes sick.  My husband, myself and Wyatt's pediatrician are convinced that attending school is THE reason why Wyatt is in and out of CHEO at a bi-weekly rate. If you could check our admissions, you would see a clear pattern, every two weeks we're in, and the following two weeks, we're out. Each virus/bacterial infection would line up with Aila's colds caught from her school.

Needless to say, the last nine weeks have been great. No one was sick in the house, it was wonderful not having to fight off cold after cold after cold... but here we are again.

September - the beginning of a new school year. Grrrreat. Now it's not one, but two children introducing viruses and bacterial infections.

The odd thing is, my children didn't start school until this past Wednesday, and Wyatt was admitted for respiratory distress on Thursday . So, to catch a cold that quickly - without his brother or sister showing any visible signs; seemed unlikely. Dr. Issa and I both thought it was aspirated pneumonia, as I was teaching Wyatt how to eat the week before. His penchant for putting things into his mouth has become strong and I felt, why not control the situation, by allowing him to taste real food, rather than rocks off the ground? Maybe he'd be less likely to put said objects into his mouth...

Wyatt had the usual tests done, blood, stool, and chest xray. I was expecting a positive for pneumonia. High grade fever, his O2 sats were super low, he had mucus coming out of the wazoo.  Surprisingly enough, his chest xray came out clean. It looked 'beautiful' according to Dr. Issa.

So, what was wrong with Wyatt?

Dr. Issa felt that it was mix of a bacterial infection with a virus, (ear infection), and that we came in at the right time. All of Wyatt's symptoms started rearing their ugly head in the middle of the night on Wednesday, and by Thursday, at 6 pm, we were being admitted to CHEO. Whatever my baby has, it hit him like a ton of bricks.

Wyatt has since been discharged, and is happily, crawling around the house. He has extra mucous, but with our nurse on hand, things are more manageable now. The kids are in school, which always helps as well!

So, back to the dangers of teaching Wyatt to eat. One, is obviously aspirated pneumonia. Two, is choking and three being that he loses his airway completely. As Wyatt's mom, I am convinced he swallows. Now, even more-so. If we want to open Wyatt's mouth up with a masseter release (a surgeon takes a knife and cuts the masseter muscles), we have to make sure Wyatt can swallow. We cannot have his mouth wide open, and him be able to stick whatever object he wants into his mouth. That is far too dangerous.

As of two weeks ago, Wyatt has been eating lunch and supper with us. Usually, I place some puréed food in front of him, and he plays with it, coats his hands (face, hair, neck, belly, et al.), and tries to shove the food into his mouth. This didn't really work for him, as he just wasn't getting a substantial-enough amount into his mouth to allow him to feel the food on his tongue, and then proceed to swallow it. What I have done is place a minute amount of food, say, the size of two peas, on a very slender, malleable baby spoon, and lightly rest it on his bottom lip. Wyatt proceeds to use his top lip to suck the food into his mouth, and voilà, he swallows his food. At first, I was venting him to see if there was any food that had made it into his gut, and lo and behold, there it was! Plus, a ton of air. Learning to swallow is difficult, and swallowing air was a newbie mistake. Wyatt doesn't need venting now, because he isn't swallowing air with his food, and he is eating more and more every day.

With that said, he is going to be getting a Feeding Study, which will allow us to actually watch his food go into his mouth, down his esophagus, and into his stomach, simply by adding some Barium to his pureed food. I'm hoping to have to the Feeding Study completed by November.

Some of you may be asking yourself, why is Wyatt swallowing? I for one believe it's from his adjustments with his Chiropractor, Dr. Craig Hazel, from Synergy Wellness.  Dr. Hazel told us we should start seeing some changes with Wyatt's mouth movements within three to six months, and August brings us to the three month mark with him. So, I would like to believe the adjustments are working. On the other hand, one can only guess that it has something to do with Wyatt's physical and cognitive development. He LOVES to put food in his mouth, and wants to be part of the eating routine at our dinner table.

Next Blog: (and we're kind of going back wards in time here) Emergency Intubation

Wyatt's Medical Equipment and How We Adapted

The passed three weeks have been relatively uneventful for our little Wyatt, he had a couple of bouts of unpredictable vomiting, which mom and dad chalked up to teething. He's been restless, drooling and sticking his fingers into his mouth for the passed week, so we're pretty sure that's what's going on with Wyatt.

I thought I would blog this week about how we live with Wyatt's various mechanical paraphernalia, which must follow us around wherever we go. He has three essential machines; his feeding machine; The Zevex, his O2 monitor, and his suction unit. Getting around with him during the first month of him being home was a nightmare. We had tons of doctor appointments, in and out of CHEO, a visit to Sick Kids in T.O, and the list goes on. I thought the diaper bag was a pain with our first  two children, well, Wyatt's diaper bag, along with the four other bags that had to be brought along was more than just a pain in the behind, it was inconvenient, stressful and we knew there had to be a better way.

So, what did my husband-engineer for me?  A suitcase/tote bag that could contain everything I required to get me from A to B, wherever that might be, in whatever weather. My only complaint about the system, is that it's heavy. Basically what he did is get a bunch of foam, this stuff being designed for storing fragile/expensive electronic equipment, and stuffed it into the suitcase, and measured the required spacing for each piece of equipment; The Zevex, O2 monitor and suction unit. The equipment slid into the gaps Andrew created, and voila, four bags turned into one. Additionally, the suitcases' pockets contain his feeding paraphernalia, alcohol wipes, and in the lower pocket, there is enough space for a diaper, wipes, diaper shirt, and a bib.

I went from toting along 4 different bags to one. Could you expect anything less from a Canadian Combat Engineer?

I think not.

What is really convenient about this bag, is that it has become part of our regime, in caring for Wyatt. Every night for our bedtime routine with Wyatt, we tote this down the hallway into our bedroom, where Wyatt sleeps, and connect him to his O2 monitor, as well as, connect the three pieces of equipment to an electical outlet to be charged. At first, with all three pieces of equipment being seperate, we were forgetting to hook one, or even, all three up to be charged. Now, it's just a matter of connecting them to a three-progned extension cable, which takes a matter of seconds.

Once Wyatt is connected to his O2 monitor, he is eventually connected to his feeding unit, which is the Zevex. The catheter tubing to the suction unit is always found in the same position, for quick, effecient access which is always placed above the feeding bag.

When we're driving, Wyatt can be found in his car seat like any other child, but what is different in his case is that he has an O2 probe connected to him in case he desats while we're driving with him.  The medical bag is placed behind the driver's seat, tied to it by a bungee cord. This allows us to reach from our driver seat with our arm, and fiddle with the Zevex when his feed is done, or when there is a clog, which happens often enough now that he is on a blenderized diet.

With that said, if we're going on a walk, we don't bring the whole kaboodle with us. We will only bring what we need with us. So, we always, always, always bring the suction unit. If we forget it, we turn back to get it. If a feed is due, we will bring his feeding unit with us, which comes with a cute, little back pack. Inside the back pack we will make sure there is a 20 cc flush of water as well, for when the feed is complete.

I bring the bag with me outside onto the deck when I'm hanging laundry with Wyatt, I'll drag it downstairs when we want to play in the play room, and I'll even push it along into the bathroom when I need to...well you know.  Wyatt comes with me e v e r y w h e r e. And so does the medical bag. We're the three amigoes. Wyatt, mom and the med bag. Ole!

Wyatt's Birthday and New Blenderized Diet

I can't believe a year has gone by with our little guy, and how fast (errr, slowly?) he's grown. He has been in the 10th percentile since he was born. There was a time he was in the 15th percentile, but that was short lived. 

Anyway, Wyatt turned the big 1.0 a week ago, and was his birthday party a success! The kiddies had fun playing with the water balloons, petting the goats, jumping on the trampoline, bean bag throwing, and of course - the pinatas! At one point, a little guy yelled out "This is the best day ever!". I was SOOO happy to hear that. Just made my day.

Because of the weather, Wyatt spent most of his time inside, either in the arms of his godmother, Lisa Hodgins, grandparents or nurse. Oddly enough, I barely saw the little guy! Mom and dad were running around until mid afternoon, and it wasn't until 3-4 o'clock I actually sat down and chatted with an old friend - and yes Crystal, we do need a girls night!

                             Wyatt blogging about his awesome birthday

I just want to send a quick thank you to the following people:

Marie & Claude: you guys are the best, you came to help us with the landscaping, and then again early Saturday to help with the setup, if it weren't for you guys, I don't know how the party would have went;

Bob & Kathleen: thank you for bringing the goats, the kids loved them, and I hope you guys weren't too bored sticking it out with them for the whole party;

Lisa: you were a great helping hand, and you were always zipping back and forth between Wyatt and helping us with the party - one helluva a multitasker!

Quinn & Ashton Brewing Company thank you for the great beer my friend, and thank you for coming - we all know you're a super busy guy who never stops working - it means a lot to our family!

Laura & Brenna: you two ladies are the most awesome pair of people I have the luxury of knowing. It is a luxury, because things are just so much simpler when you've got an awesome nurse (or two) to help out! And - I had NO IDEA how difficult it is to fill water balloons. I was soaked by the time I did 20.

Michelle: thank you for the signing cards. That gift was so thoughtful, I couldn't have even thought of it. I didn't even know they existed! It's really what we need as a family to help bridge the comunication gap between Wyatt and us.
To all of the moms who made/brought food: thank you! I know we're all busy in our own ways, so thank you for taking the time out of your day to bring something to our party!

Thomas & Melissa: how could we have had a pig roast, without the roaster? Thank you for letting us borrow yours'!

Adam: for all of your hard work, and having to listen to Andrew's god-awful ideas. You're a good friend! 

So, all in all, it was a great day. When the sun went down, the last stragglers packed up and went home. I was able to put all three kids to bed in 15 minutes. That my friends... Has Never Happened. In the history of parenthood probably. Three kids. Down. For the count. It was awesome.

To celebrate Wyatt's official one year on this beautiful, green earth we decided to begin his blenderized diet. For those of you who don't know, a blenderized diet consists of vegetables, oils, fruit and anything healthy really. We got our first batch from a recipe taken from the website www.blenderizeddiet.com and so far, Wyatt's stomach has really agreed with it. We used Recipe No.3, with a couple of tweeks. I didn't use all of the types of greens they listed, I just went into my garden and grabbed what was freshly available, so that meant, arugula, kale, beet leaves, red and green spinach, and a little bit of swiss chard. I also replaced some of the beets for more radishes, seeing as I have tons of those. 

By the end of the process, well over two hours, I had about a weeks' worth of blended liquid for Wyatt's Gtube. None of this will be entering his mouth, this food will solely be used with his feeding aparatus. 

I've made my own baby food for my other two children, so when my husband showed me we could feed Wyatt real food, I was all for it. But it is more work than regular baby food. Regular baby food, you've got one ingredient, maybe you'll go fancy and make a medley of some sort, but it does not involve 10 different ingredients. Or Cod Liver Oil. (That stuff STINKS!) Then there's all the dishes. And clean up. So, yes, it's a little bit messier. A little bit more complicated. But, I'm happy my boy is getting real food now.

We have started him on a slow regime of 30ml per each feed. So, with the blenderized diet (BD), Wyatt gets 145 ml of Peptamen Jr., and 30 ml of BD. This brings him to a total of 175 ml for each feed. Back in the breast milk/formula days, Wyatt would need 200 mls x 5 to get his caloric intake. Now that his feeds are so much less, they are going much smoother. He's spitting up less, and he can now sit during a feed, and not barf everywhere. Yeah!

Next week, we'll be starting another batch, but dad will be more involved. I told him if he wants Wyatt to get more variety, he's going to have make it! So, stay tuned - next week is dad's turn at the blender!

Vomiting blood and 2 week stay at CHEO

This week in the life of Wyatt - his three weeks were up. By this Monday, he was admitted to CHEO for moderate dehydration, and losing weight. At the time, we were also  considering aspiration (confirmed through xray, that there was no aspiration, however, there could be a case of chronic actelectasis). We rushed him to CHEO on Sunday night for vomiting copious amounts of blood, and we were surprisingly sent home with a prescription for anti-nausea meds.
Needless to say, Andrew and I decided in the early morning to contact Wyatt's CHEO pediatrician for a second opinion.  Three hours after making the initial phone call, with Dr. Issa's AMAZING nurse, Erin, we were admitted, and had an IV line pushing fluids through his tiny, little veins.

I think as parents, we always have to look beyond the initial decision that medical staff make, and really look at the bigger picture, which is their child.  Also,  we shouldn't be too sleep deprived when we decide, that yes, we do agree, with what could be, a just as much sleep deprived, doctor.  Because, it's simply mathematics in the end:

x represents sleep deprivation  

x  + (1 dad x 1 doctor ) = 1 not-so-great decision

I think that is where our problem lay on Sunday night, when my husband came home with a sleeping Wyatt in his infant car seat, parked the seat in the crib and left.  Anyway, I unbuckle him, and cover him up in his crib for the night, which is at around 2 in the morning. Dad is already asleep by now. Wyatt's feed finishes about thirty minutes later, I stop it, unhook him from his feed line, and Jude, our middle child, like clockwork, wakes up. I go to his bed, and dad is sleeping soundly next to Wyatt.

By eight in the morning, I'm calling CHEO for an appointment to see our Pediatric doctor, Dr. Issa. Her nurse, Erin, calls up within thirty minutes of the phone, and says "Come in as soon as you're able to. We'll be ready for you."

By 11:30 am, Wyatt is being hooked to IV line, because he is moderately dehydrated. By 4 pm, Wyatt is entering into his isolated room, on 4 East. If it weren't for the MDU Clinic at CHEO, I really don't know what we would have done. The system works, and Wyatt is an example of why CHEO needs systems, such as the MDU Clinic, to be accessible by complex care patients. As his parents, we saw the proverbial crack, and jumped over it; instead of falling through it.

Wyatt has now spent almost two weeks in CHEO, quickly gaining his lost weight back. He is now on Peptamen Jr., and we'll be starting his blenderized diet this weekend. We're pretty excited about it actually. We bought all of the ingredients two days before he was admitted, and unfortunately, most of the ingredients, papaya, pears, and carrots have gone to our pig. Yes. We own a pig.

Wyatt will be celebrating his first birthday soon, so stay tuned for Birthday Photographs!

Gasp! Going Week 3 at home!!

It's official, we've hit the second longest stint at home - tomorrow it will be three weeks! (The longest stint so far has been 6 weeks, between the months of Dec-Jan). Not that Wyatt hasn't had his health issues, in the last three weeks he has thrown up blood, had fevers, constipation, coughing, runny nose and teething.

Wyatt's Gtube site has some pieces of skin growing around it, but I'm not too sure if that's a good or bad thing. We may try to have Wyatt seen by his PED before the end of this week, just to make sure everything is ok. He hasn't had a fever, but he goes through bouts of discomfort, and it's hard to say if it's normal baby stuff, or if it's his operation site.

We got some good news from CCAC last week, they are to increase our nursing hours an additional 12 hours, which means Barbara will see Wyatt for three of his 10 o'clock feeds, and five of his 2 o'clock feeds. Mom is very excited! And I'm certain if Jude understood that it now means mom gets to spend that much more time with him, one on one, he'd be excited too!

Wyatt and his chiropractor, Dr. Hazel seem to be a good match. Wyatt loves going to the chiropractor, and having his adjustment. He is very talkative after the session, usually poops, and then falls asleep. Luckily, mom doesn't have to make the trek into Kanata, dad does it!  Which is great, because it means I get 2 hours of uninterrupted peace and quiet to pump, do laundry, dishes, get our daughter ready for school. Oh, and he's also happier after his sessions, and sleeps better.

On a side note of normalcy, we went on a family outing this Sunday, and it was utterly, uneventful. The kids had fun with clowns and balloons, bouncy castles, dad showed the kids different army vehicles, and mom took pictures! It was a tonne, of cheap, wholesome, family fun at the Military Family Appreciation weekend. We'll definitely be going there next year; for both days!

Wyatt driving one of the NAVY boats:

 We also had one of those rare outings to his grandparents, nana & pepere:

 He's also taken a huge liking to playing with his big brother Jude; I think I have another boy who loves trains.

Wyatt has also started to 'actively' sign with me, he does 'eat', 'milk', and 'all done'. He's also signed 'dada'.  He has danced on his bum for me, and can go from his belly to sitting position! Here's hoping we go another week without being admitted! Wyatt's birthday is in four weeks, so I'm hoping we're home for it. Fingers crossed! 

Day 13 at Home

We are nearing that point where we are just waiting for Wyatt to get sick - or worse, have an episode. We are literally in CHEO every two weeks, and we are fast approaching our two week mark being home, tomorrow. In the last two weeks, most parents would have brought their kid into CHEO under the following circumstances, but because of the support we get through CHEO's Champlain Complex Care unit, we have so far avoided it. In the last two weeks Wyatt has:

1. Thrown up blood;
2. Pooped every 4-5 days (he gets half breast milk & formula, so constipation isn't considered normal);
3. Vomit and/or spit up his feed.

After speaking with the most wonderful, Dr.Issa, we fed Wyatt whole yogurt through his gtube line, with prune juice, and we were able to get a poop (BM) out of him within 12 hrs. With that said, he is now going day three of no poop. We shouldn't obsess, I know. It's just poop. But for those of you just tuning in, Wyatt had a gastric tube inserted into his stomach a mere three weeks ago. And don't get me started on his feeds, today he was teething. So, instead of taking 1.20 hr to digest 200 mls of milk, he took 2.5 hours! Poor, little guy has a hard time keeping food down when there is so much saliva coming out of his mouth, and then you have to remember to increase his water flushes, because he's losing so much fluid out of his mouth. It makes my day crazy-busy! 

For example: I just completed a 10k run yesterday, without any training, and I can most definitely conclude that taking care of three kids is akin to training for a 10k run.  I finished the run in  1 hr 7 minutes, about 5 minutes BETTER than my 'trained' times. Had no idea how physically demanding it is to take care of my kids until I ran over that finish line, and realized "Hey - I haven't severely, physically injured myself by running 10k."

Wyatt has also been seeing his Chiropractor, from Synergy Chiropractic and Wellness Center, Dr. Hazel. We have seen some changes in his facial muscles, but it comes and goes. Dad took a week off of work to bring him in every morning, it's very intensive right now. We have also noticed that Wyatt seems to handle his secretions better - but that may be due to the fact he hasn't had a virus in two weeks. With that said, if he's teething; we're suctioning every 10 minutes or so. We cannot directly attribute it to Chiropractic care, but it may be due to his age development, the infantile brain is capable  of amazing, unexplained things. He has also been talking a lot more, both my father and I swear we hear him say Papa today!

Before Chiropractic Care:

After:

Can you see a difference, if so: post a comment in the Comment Section!

On a side note, my father did a little bit of social media work himself - but old' school styles: he talked to his work buddies about our story.

Friends from my dad's days of old in the Air Force have now accumulated well over $1600 in donations!  It still blows my mind how many people want to see Wyatt get better. I would like to send a thank you to everyone who has donated since late April, Howard & Linda Williamson, Jack G McLaughlin, Christian Girard, Doug Dolinski, Keith Kelley, Jasmin Bergeron, Patrick Thomas, Raymond Leclerc, Michel Pilon, Stewart Cormier, George & Rachel Kim, Serge Duguay, Gary Gren, Doug Macisaac, Jennifer Harris, Suzanne Knott, Valerie Keeler, Melissa Daly, Ingo Jobling (Ingo: one donation is enough!!), Natalie Lemieux, Carmen Brisson, Michelle Conner, Sandra Morgan, and last, but not least, Marielle Richard.

Et je ne peux pas oubliée ma grandmaman Miville - merçi merçi merçi. Je t'aime grandmaman, vous etes une sainte! xox 

With some of the donations, we bought a BlueAir Air purifier. This thing is huge. But it works. Trust me. Andrew decided to do some weeding - and one thing led to another, the fire was put out, and the air purifier sucked out all of the smell from the house!