The Mish Mash Blog

I have been meaning to write about Wyatt's Christmas holidays, his long-awaited specialist appointments, and our YouCaring.com fund.  So, instead of doing three different blogs, I'm cramming this all into one.  And no, there will be no seamless segway from one topic to the next!

 This is why this entry has been dubbed The Mish Mash.

So, to give some kind of semblance of organization, I'll go in chronological order.  Sorta, this may jump around a bit.

Around the beginning of December we received a very large package from Kristy Botden.  Kristy is the sister-in-law to Melissa Botden, a wonderful mother we met in the NICU at CHEO, and our friendship has only grown when things usually sputter out and become long and forgotten.  Our friendship remained even after the death of Melissa's dear baebe, Dallas, and progressed regardless of our harried lives with Wyatt's disability.  Melissa is a true friend, and that bond between us, seemed to affect her SIL as well.  Kristy wrote a beautiful letter to us explaining how much she appreciated our friendship with Melissa and Phil, told us how she shares Wyatt's story as much as she can, and basically told us - I'm here for you, and I hope Wyatt gets better.  It was a wonderful surprise.  And December was full of surprises!

The third week in December, we received an email from an editor from NBCNews.com, asking if they can use Wyatt's story as one of the 'top' stories of the year, and because the editor had used our YouCaring.com fund in her piece, we received over $2000 in additional donations!  These are people who will never meet us, and were giving $5 here, $50 there, and even two $500 donations!!  It was amazing to see that kind of generosity, especially at the time of year when money is so tight for so many people.  Once Wyatt is seen by all of his specialists, (we're still waiting on an Orthodontist to perform a TENS on Wyatt, as well as, an MRI on his brain), and IF his tests (MRI) come out normal (again), we will use the money to seek opinions outside of Canada.  We have looked into two renowned children's hospitals, one in Texas and another in Boston.  So, once again, we find ourselves in the waiting game...

We finally got a call in January, coincidentally after a nice piece done by CBC news on Wyatt, that Wyatt will finally be seen by a speech therapist, physiotherapist and occupational therapist.  We saw all three specialists within the same week, and we came home with care plan, and received some really good answers to some tough questions.  For instance, Andrew and I stopped doing mouth physio on Wyatt, because the physio would increase the risk of Wyatt being able to insert objects/food into his mouth, which we didn't want.  So, we stopped.  But, we also wanted Wyatt to learn how to swallow and speak, so how could we get around this?  Well, it turns out, according to OT and Speech, that if we want Wyatt to speak and eat, we need to do mouth physio on him.  It's a risk we're just going to have to live with.  Wyatt is older, and isn't so prone to shoving EVERYTHING into his mouth, but we still catch him trying to put certain things in there.  Not pebbles. Or chicken.

One of the two awesome pjs made from his best bud Laura.  She bought a regular  zip up polar fleece, and inserted  two holes, with piping sewn around them.  One hole was placed near his ankle, for his 02 probe, and the second hole near his belly button, for this feeding extension!  It even has a cute, little matching flap to hide the hole!

Wyatt's Occupational Therapist gave us the green light to feed him orally, and her one recommendation was to not wipe the food away from his mouth as he is eating.  Apparently, the whole eating process is incredibly complicated, and by introducing a foreign object/material into the process, it can throw Wyatt's focus on what he is trying to do.  Makes sense doesn't it?

Wyatt's Speech Pathologist seemed to be quite happy with the amount of sounds he was making, and was also happy to learn that we have kept up with the American Sign Language (ASL).  We bought this great sign language package from Baby Signing Time, which included DVDs, CDs, books and flash cards.  Wyatt loves everything!  I highly recommend any one of these products to parents whom are interested in teaching their child sign language.  A big thank you goes out to the Military Family Fund: we would not be able to afford such a package, without your help!

Wyatt's Physiotherapist was just smitten with his gait: he was symmetrical, well-coordinated and was able to pull himself up with assistance.  He was five months delayed for walking, which she wasn't concerned about, as you only start to worry once the child has turned 2 years of age.  She had estimated that he would be walking by the end of the week. In the end, it would take Wyatt an additional four weeks before he took his first steps.

On Tuesday, February 10th, Wyatt took his first steps in front of his pediatrician, Dr. Issa.  It was such a momentous occasion, but it was a little bit confusing at first.  Dr. Issa was sitting on a chair, bent over, speaking to me (squatting down to be at Wyatt's height, who was cruising at the time) and we were guiding Wyatt between each other, not *quite* letting go of him.  And then it happened.  Wyatt was in my arms, facing me, he turned himself around, and let go of my extended arms, and walked into Dr.Issa's!!

Me:  Those were his first steps!
Erin (Nurse coordinator): Really?!?
Dr.Issa, nonchalantly: "Oh yeah?"

Turns out, Dr.Issa thought it was Wyatt's first steps taken in CHEO, but not his actual I-just-hit-a-major-milestone-first-steps.  Once the confusion was cleared up, there was ecstatic squealing (I could only imagine those outside of the room's closed doors thought when they heard the racket coming from our room), and tears.  It was such a great way to end a doctor's appointment. I am so happy that Dr. Issa and Erin were a part of such an important, and long-awaited milestone.  They are two very important people in our family.  I'm certain Dr. Issa has saved Wyatt's life simply by intervening with her medical foresight.

So, I've quickly gone through three months of topics that I really wanted to touch upon, and I really hope my next blog isn't a month or two later; rather a week so later, which has always been my intention! I've also added some new pages to Wyatt's website, whatswrongwithwyatt.com, so make sure to check those out in the Timeline section!

JINXED!

I think we jinxed Wyatt.

As some of you may have gathered, Wyatt was recently in CHEO for pneumonia.  Wyatt has what is called "consolidation" in the lower, left lobe of his lung, and this area often causes us trouble.  Consolidation occurs when there is usually repetitive aspiration of foreign materials, be it, liquid (saliva) or solids - like chicken for instance, and the lungs do not completely heal from the aspiration.

With that said, Wyatt went a whopping 8 weeks without a single admission to CHEO.  This is huge, especially considering the time of the year.  It's winter time, we're hitting digits of -30 outside (although, we would not be going into that weather unless we absolutely have to), and brother and sister are going to school during high peak flu times.   Both Aila and Jude had short bouts of stomach flu and cold viruses, but our little Wyatt kept on going.  Yes, he did have a perpetual runny nose, and yes, he was getting saline masks every morning for almost a month, but hey - it's better than CHEO.  Love CHEO, but it's a hospital.  There are some wicked viruses in that place, and the commute back and forth is exhausting at times (especially when you have to bring in extra blenderized diet on short notice)!

From December, until mid January, our lives were quiet, if you ignore the beeping medical equipment, the screaming toddlers, and the farting dog.  Things are quiet.  Things are good.  And then we said it...and we said it again.

"I think we've hit a record - I think we've gone 7 weeks out of CHEO?!"

"Shhh....stop saying it.  You'll jinx us."

One week later:

"Hey...it's been eight weeks, it's definitely a record."

Eyes roll.

Three days later, we're in CHEO because Wyatt NOSE DIVES (60 minutes) into a raging fever and is struggling to keep his O2 sats above 90%.  We rushed to CHEO, and we're quickly placed in the recess of the emergency room, put on O2, received a chest xray, which confirmed the pneumonia, consequently the IV is inserted for antibiotics and signed the admission papers.  Wyatt is in CHEO for over 5 days, we leave with a Rx for five days of "oral" antibiotics.

I still think it's amazing how far Wyatt has come, especially comparing to how medically fragile he was last year.   The little guy has a good immune system, and with nursing care at home, I am a more stable mom, and am able to clean and cook after Wyatt in the best ways possible.  I am constantly doing laundry, but at least now, I can keep up (sorta).  Some days, I'm making blenderized diet for Wyatt, roasted chicken for supper, and lunches for school.  It's a busy day in the kitchen.  On top of it all,  I make my own gluten and lactose free bread, so on those days, I'm particularly busy.  Our lives, compared to last year, are wholer.  We feel like things are coming together, and our routines are becoming more natural and less mechanical.  We are no longer reacting to the situation, but are preparing for it.  I personally feel like I have more hours in my day, which is nothing short of a miracle.
 
For instance, the other day, I talked to my husband for over an hour. An hour.  It was lovely.  This was in our house, will all three kids.  I'm not going to lie, it involved a tv, but I realized then we really need each other in ways that I think we've almost forgotten.

Being Thankful

It's been a long two months since my last blog update, but in my defense, I've been a busy momma!  Our wonderful nurse, Barbara, switched to nights so I could have a break.  Since she can only a do a set amount of hours, as designated by the Ontario government, I find myself alone during the days taking care of Wyatt.  Gone are the days where I can do the dishes, laundry, sweeping and mopping, and hello to the days of changing one bib after another, signing and suctioning.

Intently watching his sing-along-songs.

So...our house got a little bit messy.

Just a schmidge. Ok, a whole lot. At one point I couldn't open our bathroom door because of the pile of clothes behind it.  I also thought I lost a kid in the mountain of toys in the living room, but thankfully it was one of the older ones; they're really good at fending for themselves!

I titled this blog post "Being Thankful" because - well, paradoxically, a lot of sh*#@y things happened to our family the last two months.  How am I thankful?  I need to start with the beginning, for you to understand the end.

At the beginning of October I found out that our son Jude, was not adapting well to JK.  Even though he had passed the pre-JK program from the summer, Jude was not liking the actual classes of JK, because he realized - they were not going to end after a couple of weeks. Also, he was being bullied by two of his male classmates, and some of the teachers at this particular French school in Ottawa, do not speak a word of English.  Yep. That's right. In the heart of Ottawa. Not a word of English.

I broke down.  My daughter had had bullying problems at the same school the year before, but it was a new experience for both of us, and I thought to myself: this must be a normal 'thing' in school now, you see it everywhere, and at any age! But, this wasn't bullying, (or so I thought), this is Jude shutting down.

My husband held me, and told me what I had been hearing since our daughter came home with her first bout of bullying; we need to transfer them to another school.

Two days later we visited the new school, and Jude started to open up to his father.  He told him that there were two boys in his class who always pushed him into walls, and did this in class and at recess.  He also tried telling the teachers, but they didn't understand him.  I don't care at what age or how 'new' I was to this whole school thing, (for Pete's sake, I taught in MTL for a year, ages 12-18), a student should always be able to tell a teacher, and be UNDERSTOOD, about their feelings, especially when it comes to their own physical and emotional security.  Jude's behaviour leading up to the transfer had also changed significantly, he no longer wanted to cuddle or hug me, and would not look me in the eye.  All he wanted was his dad (which Andrew LOVED).  My way of interpreting the above: mom nurtures me, and dad protects me.

So, that was our first hurdle, and Jude is doing ok at school, although, he's not entirely adapting to the idea of school going beyond the next month.  Aila also had her first friend over, which would have never happened at the other school, since there were no means of communicating with parents.

About two weeks later, and I'll keep this short, I totaled our family van in a car accident that was entirely my fault.  We had the van paid off as of last year, (it took us three years to pay it off at EXTREMELY high payment rates), and I totaled it.  The good news: every one is ok.  We are still driving the rental van, as it has taken our insurance company this long to get a quote to us...we still don't know how much we're getting back...

During these ordeals I've had to deal with my waning health.  I have highs, and I have lows.  With the new medication I'm on, it feels like I have a perpetual flu bug.  Andrew has had to hold me in the early morning hours to keep the chills away.  It hasn't been fun.

Then, *ray of light* we discovered Wyatt was doing so well on his feeds, that he was getting fed 180 mls at a rate of 320, in layman's terms: he's getting fed in a half hour!!!   Which was AWESOME. (Plus an extra 20 ml above his usual feed)!

 Mom thinks: let's feed him more. Let's FATTEN him up!!!

 Dad thinks: let's go to four feeds.  So, you can go to bed earlier than 11 pm.

Andrew convinces me four feeds is better than five, and Wyatt's gaining, albeit slowly, and we need to focus on our end goal: get Wyatt onto four feeds.  Within two weeks of meddling with feeds, Wyatt ends up in CHEO because he was vomiting blood.  Do we think it's from increasing his volume from 180 to 225?  It's hard to say.   We were admitted for 8 days, initially for vomiting blood and dehydration, but in mid-week he had to be put on IV antibiotics because of an ear infection, so that's what kept us there for so long. That, and the fact it has taken him especially long to get to a 2.5 hr feed.  Gone are the days of thirty minute feeds.

CHEO yoga.

We've only been home for a day,  and I know Wyatt is happy.  The little guy cannot talk, but we know, he is happy to be home.  I have a feeling it may be short, as he vomited a little bit of blood on us earlier in the day, so we may be in CHEO by the end of the week.  Thankfully, I have a nurse to help me, because this time last year, I was on my own.  I still remember how STRESSED I was at all times: it was not fun being a mom.  It felt like work being performed by a medically trained person.  Moms are meant to cuddle, nurse(*) and feed.  My job was taken over with suctioning, feeding rates, volumes, and oxygen saturation monitoring.  With all of the bad things that have happened to us, I have perspective now, which allows me to see things in a different light.  I am thankful for the Present Wyatt, because the Past Wyatt scared the living-beejesus out of me on a daily basis.  The Present Wyatt smiles.  The Now Wyatt signs.  MY Wyatt is doing better, even if it's at a very, very slow pace.   He has a character, and those who know him, love him.  I am thankful that he is alive, and we are still a whole family.

Hanging out in the recently renovated fire place.

We're all in such a rush these days, a rush to get our babies into school, rushed to get them to learn things we wouldn't know ourselves until years later, rushed to get things DONE, that if we just took things a little bit more slowly, took our time and appreciated the moment for what it was,  maybe things would end up in a better place in the end.















*I use the term nurse, as in to nurture, breastfeed and tend to.

Wyatt's Blenderized Diet - Version 2.0

I hope I'm not going to bore all of you whom keep track of my blog updates, as this may seem like a repetition of other blogs relating to Wyatt's Blenderized Diet (BD).

But I can guarantee you - it is not!

For one, I didn't make as much.  The last batches were plus 16 cups, or more.  The batches I've made last week and this week didn't go over 8 cups.  I followed the advice of our dietician, and just tried to make his meals on a semi-weekly basis.  Basically, Wyatt gets a new BD every 72 hours, as that's how long it takes him to finish 6 cups.  I'm happy I took her advice, because I find it a lot less stressful to find 30 minutes in my day, rather than 3 or more hours to make a batch of his BD.  Also, Wyatt ends up getting more variety, which his body needs.

The first jar was made on Wednesday, the second on Thursday and the third was made on Sunday.  Wednesday's BD is green as it has mostly fresh garden greens and avocado.  Thursday's  BD has blueberries in it, giving it that brown/purple colour, and Sunday's has a large red beet in it to give that pink/red colour.  I add a probiotic powder to each jar before serving it to Wyatt.  Each BD includes veg & fruit, yogurt, ancient grains, oil, protein and a minute amount of salt.

Something else I've discovered, is another use for my homemade beef stock.  I made a batch of beef stock for the family, but when making it, I had no idea I'd actually use it for Wyatt!  It is the perfect thing to thin out his BD for a couple of reasons; it has the consistency of water, the fat from the stock bones are great for our little guy (he's now in the 22% for weight), and plus he gets the benefits of all the veggies and fresh herbs I boil down for the stock.  I always add ginger and garlic to the stock as well, which are great for his immune system.  The ginger in particular is good for his tummy; with his ups and downs with viruses in September, I think his tummy appreciated the calming affect the ginger had on him.

I've also made a conscientious effort to always add an avocado to every BD, because of its high fat content.  We've been battling with his weight since he was born, and it was only until we introduced the Peptamen, that he began to gain significant pounds.  The reason being, he was able to be fed less because of the high caloric content of Peptamen, so instead of 200 mls of breast milk and formula, he was transitioned onto 145 ml of Peptamen.  The sheer volume change insured Wyatt wouldn't be spitting up so much; consequently gaining weight.

So now we've got a bigger baby on our hands and he has started showing signs of becoming hungrier, earlier.  Wyatt's feeds are timed, so he's fed five times a day; at 06:00, 10:00, 14:00, 18:00, 22:00.  Our goal is to eventually drop the 22:00 (10 pm) feed, so that mom can go to bed earlier than 11 pm every night (sometimes midnight or later!).  To do that, we need to increase every feed by 40 ml, so the feeds go from a volume of 160 ml to 200 ml.   It was very convenient when Wyatt started showing signs of being hungry before his scheduled feeds, and we were right on board! Yah, let's feed you more kiddo!  Wyatt now gets fed 170 ml (50 ml Peptamen, 120 ml BD), at a rate of 190, which means he gets fed 170 ml in about 50 minutes.  Next week we'll transition him to 180 ml, but take his rate back down, to ensure he handles the increased volume.  There is real science behind feeding this guy, I never thought I'd analyze my child's food/feedings as much as I do with Wyatt's.

 But here I am.  Blogging about my baby's eating habits (again)!

Next week, Wyatt will be on a 100%  BD, and our dietitian will be coming by in two weeks to see how he is doing.  Today, Wyatt got weighed and at fifteen months, he is 9.2 kg.  This places him in  the 22nd percentile according to age, however if one were to go by his height instead, he is in the fiftieth percentile, which is not too shabby.  

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!