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! 

Life with a Gtube

Life with a Gtube, even with the changing of the dressings, seems less worrisome. It's not necessarily simpler, since doing the dressing change, on your own, is a bit of a science. You have to do it quickly, and be aware of the little hands that want to explore the area. What makes it easier now, or should I say, who, is that we have a RN (a lovely woman by the name of Barbara), that comes in five times a week for three hours, who looks after Wyatt while mom gets housework done, or pays attention to the middle child, Jude. 

Jude, is unfortunately, typically overlooked. I feel as his mother, he deserves more attention, but it just isn't in me to do so. When Wyatt is having a bad day, it usually means Jude is parked in front of our 'tv' (laptop), and watches his shows until one of two things happen:

1. He has a meltdown, and demands my attention;
2. Dad comes home.
3. 
   

The poor guy is a terrific kid, he is a big helper in the kitchen, and cleans up after himself. BUT, on his bad days, he screams, hits and is honestly, just plain old mean. As his mother and father, we have to keep in mind, that Jude is feeling the  brunt of Wyatt being home. For Aila, it's status quo. She goes off to school, and her routine isn't disrupted. For Jude, everything is thrown out the window once Wyatt is back from the hospital. Jude's routine when Wyatt is in hospital VS when is home, are two completely different routines. It's hard for the little guy, but he's resilient. And tough. As a three year old, Jude is trying to be at his best, but some days, it's just too much for him. Especially when you go from mom being at your side all day, and then the next, her pushing you away, so she can get space to suction his baby brother.

I digress, Wyatt has been doing great since coming home. His gtube site looks great, still no sign of infection. Hopefully it stays that way.

He's been seeing his chiropractor for almost a week now, on a daily basis. His "surprised" look on his face has turned into a more relaxed (normal?) look. I, at first, thought he looked tired, almost weak. But, after discussing with dad, realized that that's how babies are supposed to look - 'not surprised' all the time. He is also babbling more, and his swallowing seems to have improved. We have also heard him 'playing' with his spit... not too sure what that means though. 

We are still awaiting results for his biopsy on his frontalis muscles, and have recently done bloodwork to have our genes sequenced to hopefully discover some kind of mutation, which may tells us what's wrong with Wyatt.

How's this for LIFE EVENT?!?

We began the week by having about four hours of sleep Sunday night. Mom woke up at 4, and consequently, dad woke up at 4:30. Then we did our usual thing, get our daughter ready for school, pump, pick up coffee (coffee maker broke), drive to CHEO and wait.


What we were waiting for, or more like who, was Wyatt's anaesthesiologist, ENT doctor, and PED. We were to decide if Wyatt was truly going forward with the Bronchial Scope, and if he were, would he be getting his gtube and muscle biopsy. 

Little did we know, that we would be revisiting the topic of the elective tracheostomy again.

At 10:00 in the morning, sitting at a round table, we were discussing amongst three staff CHEO doctors, as well as, Wyatt's nurse, and Social Worker what we were to do with Wyatt. Alliteration not intended.

We sat there for almost two hours. Talking about the pros - it's a second airway, if he were to choke, we'd be guaranteed a means of providing him oxygen, and a likely direct route to the blockage, and can suction it out. And talking about the cons - there was a chance he'd be in CHEO for up to three months, just to recover from it. The cleaning of a trach is difficult at best, and it would only complicate Wyatt's already, complicated care. Wyatt could pull it out, and it's usually a matter of just reinserting it, and since it's a second airway, it wouldn't be a big deal anyway. Uhuh.

Doctors have a way of making something that seems completely daunting to you, and normalizing it. Noon of last Monday, I was convinced I was going to have a Trach Baby by 6 pm, that evening.

Then mom and dad went on a little walk. Talked. Dad being the usual optimist is convinced Wyatt is going to be fine during the operation, and will not need an emergency trach. We go back to the doctors with our final decision.

Wyatt will get an emergency trach if the anesthesiologist intubates, but loses his airway with a fibre optic scope. If she cannot insert the fibre optic to begin with, we abort the whole operation.

For those of you who don't know, Bronchial Scopes, Gtubes, and muscle biopsies are normal, day to day operations for CHEO staff doctors. They don't even call it a Gtube operation. They call it a procedure. 

By 2:00, 45 minutes after Wyatt was supposed to go into the operating room, we're finally called down to the OR room. I carry Wyatt into the OR clinic, and there, there are over 10 doctors waiting for Wyatt. I look around and ask if any are students, who don't need to be there, and no. Everyone is staff. Everyone plays a primary roll in Wyatt's surgery. I hand him off to his ENT doctor. I give him a kiss. I touch his neck, for what I think is the last time will be clear of any kind of a breathing device.

I turn to leave, and can't help to look back at him - and think, he has no idea what he's going into. And neither do we.

As a mother, I take my responsibility to protect my children very seriously. And that afternoon, I couldn't help but feel, like I shouldn't have let him go.
2:30 rolls around, Wyatt's PED leaves me to go check on Wyatt. This whole time she's been trying to keep me from losing it. Dad has driven off to get our daughter from school. So, I'm waiting, and chatting with an old friend from high school, whom is by coincidence there for her son's procedure.


3:00 o'clock. Our PED comes with what cannot be mistaken for complete, and total, elation. Wyatt was successfully intubated. No trach! It doesn't mean we're out of the woods yet, as extubation, can be just as risky as intubation. But I can't help but feed off of her, and I feel so, SO, so happy. It was like a little bit of the weight on my shoulders was taken off. Dad felt the same way too.

4:00 o'clock. ENT doctor comes in and says Wyatt has done great, and after scoping his esophagus, and lungs, everything seems normal. In her words, his lungs are 'beautiful'. Which is surprising, as Wyatt has had pneumonia three times, in the last four months. (I'm going to have to say it's not just the antibiotics, but also the EBM he still gets that has helped him heal so nicely).

5:00 o'clock. Staff surgeon comes in. Gtube went smoothly, as he predicted. He confirms that Wyatt is getting the muscle biopsy done, and then it's extubation.

Waiting for the extubation was excruciating. I just felt like things were going too smoothly, something bad is going to happen. Forty minutes later, we get our answer, Wyatt had a tiny piece of muscle removed from his upper eye, and will likely carry a scar there (his dad has one too, in the same spot, but it's from a ninja sword fight...or so I'm told). And the best news of the evening, Wyatt was extubated successfully, and is recovering in the PICU (Pediatric Intensive Care Unit).

Wyatt takes the next five days to recover at an amazing rate. Day 1 of recovery, he's already sitting, napping on his stomach and tolerating his pain management (Tylenol every 4 hours). By Day 2, he's gets one dose of Tylenol, (preventative for dressing change), and by Day 5, he's in the bouncer! Wyatt is just full of surprises.

The CHEO staff doctors, in particular, ENT and Anaesthesia should really give themselves a pat on the back - they have really accomplished something special this passed Monday.There is very little literature on intubating infants with congenital Trismus successfully (not having an emergency trach). They truly accomplished a great feat in my books. And in medical books. 

In retrospect, we should have bought them some wine (or beer) to celebrate their (Wyatt's) accomplishment!

The Eventful Life of Wyatt Scott

Today, mom, dad and baby Wyatt were supposed to do a live interview with CTV news at 11:30, but unfortunately, we had to cancel, because Wyatt's pediatrician, Dr. Issa, put into motion the Bronchial Scope. This means a couple of things for little Wyatt if he's going to be put under by anaesthesia:

Bronchial Scope, which may be able to remove the remainder of the chicken, which he is still spitting up three days later;

A biopsy of one of his jaw muscles;

A Gtube.

Three days ago, I was madly researching about Tracheostomies, now I'm back to where I was three weeks ago: The Gtube. Although, we have mixed feelings about the Gtube now, because it will delay his chiropractic care, we know the Bronchial Scope is necessary, and since he's under - the Gtube should be done. It may prove fruitful, as the Chiropractor felt that once Wyatt had his quasi-adjustments done, he would be more aware of the NG down his throat, and could cause even more reflux.

As I run out of more and more breast milk, (dipped to half my production from catching a nasty virus), I hope the Gtube will help Wyatt with his reflux, as it's quite bad when he's on 100% formula feed. Eventually, Wyatt will be on 100% formula, I can't pump forever after all, so it's something that has been hanging over my head.

 

Other than spitting up some random pieces of chicken, as you can tell, Wyatt is doing pretty good! I wish he was older, that way we could talk about the procedure, instead of him waking up in pain (Gtube will cause him pain), and wondering "What the heck did these people do to me???"



Wyatt's Choking Episode and his new Chiropractor

Wyatt was rushed to CHEO this Tuesday after a severe choking episode that left him unconscious for approximately 2 minutes. Dad performed rescue breathing, back blows and called 911 simultaneously. Amazing guy isn't he?

Well ladies, he's taken. So, back off.

Some of you may be thinking, where was mom when all of this happened? She was on a rainy-day stroll with the toddlers. And once she got the phone call to come home, it became a 500 meter rainy-day sprint. With a 38 pound toddler boy in your arms, and a 4 year old trying her best to keep up with you.

Regardless to say, I basically made it for the goodbye wave, but not before chucking some shoes and wallet to dad. Dad gave a detailed account in our Facebook page of the events.

Wyatt was admitted to CHEO that evening, and an hour after signing the admittance papers, Wyatt coughed out a very large piece of chicken from his mouth. 48 hours later, Wyatt is still spitting up chicken, and we're hoping he'll get a Bronchial scope to see what is left inside of him.

This choking episode ignited the topic of an elective tracheostomy for Wyatt. Its purpose is only for it to be used as a second airway when he chokes, and stops breathing. So, he'd always have the trach, until he learns how to one, open his mouth, and two, swallow. As his parents, we're leaning towards it, as we see the bigger picture right now - Wyatt is a normal, developing baby, he has the ability to become a normal adult. If he loses his airway, there is always, a very good chance, he'll have brain damage. So far, we've been lucky. I don't want to rely on Lady Luck for my child's future. It's going to suck to learn about more medical paraphernalia, just one more thing on our plate, well, mom's plate. I would be doing the cleaning and suctioning, as dad has this thing with necks. Don't ask me. I don't get it. Anyway, one more thing to learn, but I'm hoping it will all be worth it in the end.

Wyatt will hopefully start seeing his Paediatric Chiropractor next week! He's going to work on his Cervical vertebrae,which does show a definite misalignment, and may be able to explain his inability to open his mouth.