Friday, 25 December 2015

I'll be Home for Christmas

Grandmaman optimistically bought Jason these pyjamas for Christmas and today, just for the day, it came true!
We were off to an early start and met Santa on our way out the door.  Sick Kids is amazing... we got gifts for our kids, activities throughout the week, a Christmas dinner and much more...
Greeting Santa on our Way Home!
Jadon sporting his toque given to him by a Ronald McDonald Room worker
The kids absolutely loved having Jadon home for the day.  The older two ran outside to greet him in their bare feet.  When I asked them what they were doing, they cried "Dad, this is a once in a year event!"
The cousins
Lilin took a picture of her favourite ornament... one celebrating her adoption.
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It was so nice to see Jadon walking about and playing around!
Taking a nap after the festivities!
We were able to enjoy the day with family and friends, have a good turkey dinner put on by Sara's parents at our home, and some play time.  An exhausted Jadon is now sleeping peacefully in his room back at Sick Kids.

Sunday, 13 December 2015

More steps in the right direction

This has been another eventful week.  It has been determined by the cardiac team that the changes seen on the last echocardiogram indicate that the improvement in Jadon's heart function is substantial and that his heart is not really a big issue anymore.  It seems likely that the cardiac artery bypass graft (CABG) surgery performed in June has had some effects.  We were told it may take up to 6 months to show improvement and here we are!  His function has moved from moderate/severe dysfunction to only mild dysfunction.  As a result, late this past week he was transferred out of the Cardiac critical care unit (CCCU) and into the Pediatric intensive care unit (PICU).
The three bros sharing smiles!
On Friday they removed his replogle (the tube providing constant suction) to see how he would be able to manage his secretions, given he has been on the prokinetic drug for 2 weeks now.  He is still being suctioned every 3 hours but is doing well.  We are hoping and praying that he will start to be able to fully manage his saliva on his own.  The plan is to transfer him to the general pediatric floor as they continue to manage this.  He is in really good spirits and has been pulling himself up in his bed and even taking a few steps - something he really hasn't had the strength and energy to do for several months.
Standing in his crib!
We are once again cautiously optimistic that he may finally be on the mend.
Mischief!

Sunday, 6 December 2015

Heading in the right direction once again!

Well it has been another eventful few weeks.  Jason has been in the CCCU for two weeks.  He has gone through stages of extreme lethargy, to discomfort to agitation.  He has had days and nights of almost constant sleeping to days and nights with hardly any sleep. He's gone through another round of multiple medications.  He has been NPO'ed (no food through mouth, or for him, gtube), and had feeds started once again.  He has gone through intessusception and pancreatitis.
Yet here he is once again smiling.  The last few days have been pretty good.  We've seen the rascally Jadon come out again.  He's squirted several staff members with water from syringe during rounds.  He's taken to playing on a mattress on the floor, even napping there at times, prompting the head of the ICU to take his picture and send it to the CEO as 'proof' that they need more critical care bed space at Sick Kid's! ;-)
We are currently waiting to see how the new prokinetic drug they started about a week ago is working to increase his esophagus motility.   If this works it would be great.  If not we are likely looking at another surgery to undo the fundoplication.  We are desperately praying that this works and we can continue heading in the right direction.

Wednesday, 25 November 2015

Emotional yo-yo!



Sunday night Jadon was admitted to the cardiac critical care unit because of severe lethargy and low blood pressure.  On Monday morning after a blood transfusion and some time on a blood presser, he was doing much better.  He was followed up with several ultrasounds and x-rays and since he was doing so well, was moved up to the cardiac floor early Tuesday afternoon.  It was nice to have such a short stay in the CCCU.  

Our relief however was very short lived.  In the evening, Jadon's blood pressure was extremely low once again.  Less than 8 hours after leaving, Jadon was once again admitted into the CCCU.  This time he was put onto 2 different blood pressers and ended up on a morphine infusion due to his obvious pain and discomfort.  He has had several other diagnostic tests to help figure out what the issue is.  The telescoping of his intestine has corrected iteslf, but tonight he sits in the CCCU, lethargic and uncomfortable.  The medical team is not exactly sure as to the source of the issues, but are currently querying pancreatitis, given his pancreas enzymes are elevated.

Through this all, Jadon has been able to remain on room air, which is encouraging.  One of the tests was an echo-cardiogram (heart ultrasound).  It shows that there may be some small improvement in heart function through this all.  We will take whatever positives we can during this difficult past 2 weeks.

On a positive note, Jadon is featured on some huge monitors around the hospital as part of an advertisement. The woman in the picture is was awarded a "Smile" award and asked for Jadon to be in the photo with her. To bad he had just woken up and did not smile. ( The pic was taken in the summer when he was more fluid overloaded)


Monday, 23 November 2015

Back to the ICU...

This past week has been tough!  After the dilatation did not work, the plan has become to try an reverse the fundoplication, with hopes that once the wrap is undone, Jadon will be able to cope with his secretions.  There is still question of whether they should redo a loose wrap, a partial wrap or no wrap at all.  Of course, if the fundoplication is undone, the likelihood is Jadon will once again experience severe reflux.  In view of this, the medical team decided to change his G-tube (tube sticking directly into his stomach) into a GJ-tube (a tube through the same hole, but passing through the stomach, through the duodenum and into the jejunum).  The thought is that the feeds entering directly into the intestine will decrease the acidity of the stomach and thus decrease the reflux once the fundoplication is taken down.

This change in feeding tube was done on Tuesday and once again, it was tricky to get the procedure completed on Jadon.  I asked the radiologist who completed the insertion about the danger of intussusception (when the small intestine telescopes on itself), a potentially dangerous issue sometimes triggered by a GJ insertion.  I was told that it mostly happens with younger children/infants and it was very rare in someone Jadon's age.  I should have taken that as a warning!

On Wednesday, Jadon was showing some abdominal discomfort and was taken for an x-ray and ultrasound.  They discovered some fluid collections around his stomach and they were querying a perforated bowel.  I rushed to get down to the hospital in the evening as it was indicated that an emergency surgery was quite likely.  An upper GI study under fluoroscopy ruled out a perforation and so that was averted though the adrenaline rush to the whole family was not!

Over the weekend Jadon was more lethargic, to the point where he spent all day Sunday sleeping and/or just hanging out in my arms, which is NOT like him at all!  He could not even be talked into a walk to the playroom or splash with water in his bed.  Since all his vital signs were good, the staff kept an eye on him but there was nothing to intervene on.

At shift change, Jadon's blood pressure was quite low.  General surgery, GI and CCRT were called.  Given his lethargic state and continued dropping of blood pressure, they wanted to take no chances on Jadon and we were once again admitted to the ICU.  Jadon received another blood transfusion and blood pressers for a while to get his pressure up.  He looked quite good in the morning and back to his mischievious self, but his stamina was gone.  By the early afternoon he was quite lethargic again.  With several more x-rays and ultrasounds, they determined that yes, of course, the rare instance occured.  Jadon had intesusseption.  So they have removed his GJ-tube and replaced it with a G-tube. (one step forward, one step back).  He is feeling a bit better now but still in abdominal pain.  They will continue to monitor him and hope that he will be over this in the next few days.

As we were admitted into the ICU, we were told what room number we were going to.  Sara looked at me at said, "Figures, that is the ONE room of the 8 possible rooms in the cardiac side that we have not been in yet!"

Wednesday, 11 November 2015

Remembrance Day... we will never forget!

November 11th has a special significance for us.  16 years ago today, Sara and Steph Parent became parents for the first time as lovely Rykauna Doris Parent came into the world.  Our lives have been one great adventure ever since!  She has always been a wonderful and intriguing child.  We recall her telling us before her 3rd birthday... "I want to have a sleepover birthday.  The parents can come drop the kids off but they can't stay!"  She went on to arrange the sleepover to a rousing success!  She has not stopped aiming for the stars since.

Rykauna makes us proud.  She has grown into a wonderful young lady, full of compassion, creativity, optimism and joy of life!  She certainly adds a spark to our family!  She has matured tremendously over the last difficult year.  We are truly blessed to call her our daughter!
Rykauna being a wonderful jiejie!

Tuesday, 10 November 2015

Dilatation did not work...

So on Friday, Jadon went in for another procedure.  The plan was to insert a balloon attched to a scope down his esophagus to the spot of his fundocplication.  Then the balloon was inflated to try and dilate the site of the fundoplication to allow for secretions to flow through better.  Jadon had to be sedated and therefore had to be intubated again.  The procedure went well but accomplished nothing.  The doctor who performed the procedure indicated that the tightness of the fundoplication was not the issue.  The medical team was not surprised to hear this as this was somewhat expected but they had hoped that it might help.

So, we are now on to the next plan.  They team is talking about several different drugs that would likely help the motility of the esophagus.  Whether these need to be given for a while or to perpetuity is anyone's guess at this time.  There are a few different options with their pros and cons and we are waiting for their recommendation.

Meanwhile, Jadon is doing fairly well still attached to the replogle tube.  He has started retching a bit during feeds once again and the team is still struggling a bit with keeping his fluid balance down.  Overall he is in good spirits and we love the little fellow.  Time will tell what the long-term prognosis is.
Jadon playing with one of the therapy dogs
Making one of his many faces!

Friday, 30 October 2015

Happy Gotcha Day!

It's hard to believe but Oct 29th was the one year anniversary of Jadon joining our family. 
Creative Rykauna made a little poster for Jadon
It has been a wild year with lots of medical drama but one thing is for sure....we are all head over heels in love with this boy who is medically fragile but who is a true heart warrior. He has been feeling better the past few days and engaging in lots of sensory play...including this bowl of spaghetti noodles the child life specialist made him. His mischievous grin and love of life are evident even when confined to a bed for so long.  
 Next week he will hopefully have his fundoplication dilated as per the decision made Thursday by his multi-disciplinary care team. The round table discussion had : Cardiologists (yes, three were there, general surgeon, ENT surgeon, gastroenterologist with her GI fellow , heart function nurse practitioner and her cardiac function fellow, PT, OT, Complex Care Pediatrician, Complex Care Nurse coordinator, and Steph and I. Jadon had a GI scope over a week ago but they passed the scope through the fundoplication site without dilating it in hopes that would be enough...it wasn't. The team is hoping dilating the fundoplication wrap site will improve movement of fluids from his throat to his stomach. Praying it works... complication-free.

Friday, 23 October 2015

Back out of Critical Care for the ????th time!

Jadon just got moved back up to the Cardiac Floor this afternoon.  He has been doing better to the point where they took off all breathing help on Wednesday.  The main difference is they have been controlling his secretions using a replogle tube... basically a suction tube partway down his esophagus which is attached to constant suction.  This way his secretions never get an opportunity to build up.  His SATs have been sitting around 95% which is higher than they have been for a very long time.
Jadon's favourite activity... playing with water!
So, they have determined the cause of Jadon's breathing issues leading to his cardiac arrests.  It is a build up of secretions (mostly saliva) in his esophagus, that when he lies down, become an issue in his trachea and occlude his airway.  The problem is that they do not know the cause of the secretion build up!  They have eliminated all of the more common causes and have some tests ordered and a multidisciplinary team meeting planned to discuss the cause and what they can do to deal with it moving forward.  The replogle tube works, but that is not a long-term solution.
Jadon with no nasal prongs - just the replogle tube (and PIC... and g-tube... and EKG leads...)
Million Dollar Smile!

Saturday, 17 October 2015

Some answers but lots more questions.

Since Jadon's cardiac arrest on Sunday night he has undergone several tests to see if the medical team can determine the cause of his respiratory issues that have really been with him since his fundoplication surgery in early September.

The saliva scan indicated that he was pooling secretions above the fundoplication.  An endoscopy was done to see if the wrap was a little bit too tight and to dilate it if that was the case.  However it was shown to be fine and the opening was appropriate.  Thinking perhaps that there was a A flexible and rigid bronchoscopy were then performed to look at Jadon's trachea.  They found some 'interesting' structures (what isn't interesting about Jadon) but nothing that would indicated reasons for the obstruction/secretion build up.

The cardiac critical care attending physician has indicated that the team plans to continue to try and figure him out.  He was taken off the ventilator yesterday and is breathing on his own with some oxygen again.  He has also started coughing on his own which is encouraging because he has not been doing much of that over the past month.  At the very least the cough can help move secretions along.

So once again Jadon's complex condition raises many questions but provides few answers.  We continue to pray that things can be figured out and he can come home safely with the ability to protect his airway.
Singing Twinkle Twinkle Little Star... this is the "like a diamond in the sky"

Monday, 12 October 2015

This Sunday Evening... another Cardiac Arrest!

Jadon has been in the hospital since last Sunday.  He has been on hi-flo oxygen to maintain proper oxygen saturation.  Each evening he has secretions build up and rough breathing sessions.  Over the last few days he has had a lot of stomach pain, discomfort and bloating after his feeds.  It was decided last night to send him to x-ray to make sure that the g-tube was well placed and that there were no specific issues.  While there, he suddenly got significant respiratory issues and ended up having another cardiac arrest!

He is currently stable on the ventilator in CCCU and seems neurologically intact, for which we are thankful.  He was asking for a saline ampule to play with and for a massage.  The team hopes to scope his fundoplicatoin site either today or tomorrow to slightly dilate it and allow for him to swallow his secretions.  They will also perform a bronchoscopy to look at his trachea.  Praying the team is given wisdom as they continue to treat his very complex condition.

Monday, 5 October 2015

Unfortunately, a short stay home!

So Jadon has been readmitted to the hospital with breathing issues.  Since coming home on Wednesday he was gradually needing more and more oxygen.  Finally on Sunday evening we brought him in to Sick Kids as he was having shortness of breath, effort of breathing and was struggling to keep his SATs up.  He spent the night in emergency, was admitted to the Critical Care around 6 am and moved up to the cardiac floor around 2 pm.  He is on hiflo humidified oxygen and is resting relatively stably.  We are hoping and praying that this is just a short stay as they work through his issues.

Saturday, 3 October 2015

Jadon is out of the hospital, but the hospital is not out of him!

Having Jadon home is a blessing, but has also proved to be a lot of stress and work!

Jadon gets fed every four hours (but at least we get to skip the 1:00 am feed)!  He is currently on a formula that we have to mix so that adds to the set-up time.  The pump needs to be primed, dose and rate set, and it runs for just over an hour.  After that we need to flush out the G-tube and clean the feed bag/line.

Jadon gets meds 6 different times a day, for a total of 26 doses.  These all have to be drawn up with various amounts and individually injected into the g-tube or feed-bag.

One thing that is unexpected is that Jadon has needed to be on constant O2 since coming home.  The plan was to use it on and off as needed, but whether it be the increased activity of interacting with his siblings, or the new environment, or something else, he needs it.

The other stressful thing is the suctioning.  Every few hours, we can see Jadon struggle to breathe a little, and hear a bit of gurgling at the back of his throat.  We ask Jadon if he needs suctioning and he will nod his head yes.  If we don't ask him quickly enough, he will get our attention and ask us to suction him!

Finally, every day we get a community nurse come in to run Jadon's IV antifungal med through his picc line.  She is teaching Sara to hep-lock it so that the nurse will be able to stop by to start the med and then Sara will deal with the end.  Within a few more days, she will train Sara to do it all from start to finish so the nurse won't need to come daily.

This all boils down to a pretty full-time job.  Because of the feed and med schedule it is difficult to get a long uninterrupted stretch of sleep.  The kids and grandmaman have been great in playing with and entertaining Jadon - who is absolutely thrilled to be at home.  We are starting to train some of them on some of the medical procedures so that hopefully we can get a bit of a break here or there!
Here is a picture of our living room a.k.a. Jadon's hospital room.  You see one of two concentrators (hi-flo and low-flo), one of 3-different size back-up oxygen tanks (middle size), the feeding bag and pump, suction pump, IV pump and O2 sat monitor.

Wednesday, 30 September 2015

Home Sweet Home!

Yes, it is finally true!  After 7 1/2 months at Sick Kid's, Jadon is finally home.  It has been an incredible journey- one we would not wish on anyone!  He is coming home weaker than anticipated, and with a fair amount of medical equipment.  We have oxygen, O2 saturation montitor, g-tube, PICC line for anti-fungal meds, suction.  He is on 9 meds, most of which he takes 3 or 4 times daily.  But he is home.  We are all under the same roof once again!
We did not tell the kids Jadon was coming home as we did not want to disappoint them if something came up.  They each found out as they walked into the door.  It was great to see their enthusiasm!  Here they are in order.
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They spent the evening trying to get Jadon to laugh and interact with them.  Jadon was thrilled to be among his siblings again.  At supper time, an excited Li Lin said, "On a scale of 1 to 10, this is 100!

Sunday, 20 September 2015

A one-way ticket out of the CCU hopefully!

It has been 18 days since Jadon's most recent surgery.  Since his cardiac arrest he has progressively been improving.  Jadon has once again battled through major setbacks.  He spent 'only' two weeks in the critical care unit this time.  His kidneys and liver are working much better.  He has been able to maintain a much better fluid balance.  His feeding tube is working well and he is now able to get full nutrition through this.  He is sitting up in bed for well over an hour.  He has started taking some food orally once again.  We are able to go on short walks around the hospital again.
Jadon is still on a little bit of oxygen and is still requiring to be suctioned periodically.  The medical team will be starting him on some more heart medication that will help to deal with those issues.  The finally seems to be a light at the end of the tunnel.  We are hoping that over the next little while Jadon will continue to gain strength and that soon we will once again be reunited as a family.  That day can not come fast enough!
Brave Jadon showing many of his battle scars, his newly inserted G-tube, his pic-line and oxygen.  We all think his chest incision is now 'looking great' compared to what it has been!



Monday, 7 September 2015

Not exactly the way we envisioned it!

Jadon turned 3 today.  This was the first birthday of his that he had with mom and dad around.  It was the first birthday he had with a family and friends that are behind him and supporting him.  Unfortunately, it was likely not the first birthday he spent with multiple health caregivers surrounding him.
When we first adopted Jadon, we thought his heart issues had already been fixed with the Tetrology of Fallot surgery.  As it turns out, he had only received a temporary fix, buying him some time until he could get the complete surgery.  When we went into the hospital on Feb 11 for his complete Tet repair, we had absolutely no expectations that his birthday would be spent in the hospital.  Even during the summer, we and the kids were so looking forward to this day.  We were hoping that after Jadon's G-tube insertion and fundoplication on Wednesday, that he would be recovering well, taking his feeds, and be upstairs in his own room on the cardiac floor.  We were hoping that his birthday would be only days before he would be able to come home.

Unfortunately, due to the cardiac arrest on Wednesday evening, and the liver and kidney complications, Jadon is still intubated in the Cardiac Critical Care Unit.  This is where he celebrated his third birthday.  The nurses from both floors, the CCCU and the Cardiac floor were absolutely wonderful.  They helped Rykauna decorate Jadon's crib area, made and signed cards, brought gifts and a cake, and sang Happy Birthday to Jadon.  We could once again see the love that so much of the staff have for Jadon.

Jadon's liver enzyme numbers are looking much better.  His kidneys are working better and he is starting to get rid of the excess fluid (which is currently his biggest problem), he is on minimal ventilator settings and he is tolerating significant feeds through his newly inserted G-tube.  Once again, our little warrior is fighting through yet another setback!  We are so proud of him and we love him so much.

Happy Birthday Jadon!

Thursday, 3 September 2015

How much can one little guy take?

Jadon had his g-tube insertion and fundoplication surgery yesterday.  The surgery itself was a success and the doctors even fixed a small hiatial hernia.  The surgery took almost twice as long as planned because as the world renowned and award winning general surgeon said "He was really tough" to work on.

The postoperative phase however was not nearly as good.  He went back to the cardiac floor and starting having some respiratory issues.  Eventually he was overwhelmed and he had a cardiac arrest.  The nurse and doctor were in the room and CPR was started immediately and the episode was relatively short... about two minutes, though to us it felt like hours!  He is now in the CCU once again, resting on the ventilator with two blood pressure meds to support him.  His kidneys are not functioning well, but he seems to be neurologically intact.  They plan to leave him on the ventilator for a few days to allow his body to rest and his vocal cord swelling to go down.  Yet another issue!  We are losing count, yet this absolutely brave warrior pushes on!



Tuesday, 1 September 2015

Twas the night before surgery... yet again!

Well here we are yet again.  Another nervous night before another surgery.   Jadon is scheduled to be the first case for General Surgery tomorrow.   The plan is to do a G-tube insertion and a fundoplication.  The hope is that after this, and his recovery time, he will be able to come home.  We are once again looking forward to the surgery bring completed but are also apprehensive of post-operative complications given Jadon's track record.  The plan is to do the fundoplication laproscopicly which is less invasive and should mean a quicker recovery time.

Jadon had progressed a lot over the last week.   He is more engaging, more active and even took several steps on his own.  Once again, he hits new milestones just before surgery.   This makes it hard to think of him going under the knife again just as he is getting better, but we are thankful that this shows his body is stronger and thus more ready to withstand the ordeals of another surgery.

We continue to appreciate all of your prayers for Jadon, for the two of us here at the hospital with him, and his siblings and family waiting nervously at home.
Jadon grooving at Buskerfest last weekend

Tuesday, 18 August 2015

Another surgery date... hopefully the last.

More news today.   Both the CV surgeon who performed Jadon's two heart surgeries, and the general surgeon came to see Jadon and it has been decided to move ahead with the two surgeries that Jadon was originally scheduled to get in early May.  The G-tube will allow us to get enough calories into Jadon to promote growth and development while the fundoplication (basically wrapping the top little section of the stomach around the esophagus to create a sphincter) should help control Jadon's reflux and regurgitation.  The OR has been booked for September 2.  If all goes well (and unfortunately given his track record that is a big big IF) Jadon should be able to come home a couple weeks after surgery.  We are so looking forward to that day!

Meanwhile Jadon is still not sleeping much st night but has beenough much happier the last few days.  He is more engaged Austin and trying harder and enjoying physio once again!  Now we have 2 weeks to get him as healthy and as strong as possible before the next surgery.


Sunday, 16 August 2015

It's not all smiles and chuckles!

Some days just look like this.
One of the not so good days at physio!
 Jadon has not been feeling himself lately.   He has a urinary tract infection and has been fighting fevers,  nausea and overall malaise.   We aren't sure if some of his discomfort is due to too rapid a wean of his narcotics.   He has been quite grumpy and we don't see much of his happy smiley self.   The biggest challenge we have faced is his seemingly impossibility of getting a regular night's sleep.  Jadon sleeps fitfully and is often awake more than ten times a night.  Obviously this leads to lack of sleep for whichever of Sara or I will are with him for the given night.  The lack of sleep is wearing on us and some days we feel just like Jadon looks in the above photo.

Tonight we are trying something new.  We have a regular bed and I will be co-sleeping with Jadon.  Hopefully this is a key to some rest for all involved!  Please pray that he starts to sleep as we are getting exhausted.
Jadon and I will attempt to share this bed!


Monday, 10 August 2015

Any way you say it... it's a long long time!

Half a year.  6 months.  26 weeks. 182 days.  It's been a long long time.  When we arrived in the hospital early in the morning of Feb 11 we were anticipating one surgery and a stay of 10 to 14 days. If things got a bit complicated due to Jadon's multiple issues, maybe stretching on to 3 weeks.  Boy were we wrong!   Here we are half a year later still in the hospital.

Jadon has had:
6 surgeries:
     - original Tetrology of Fallot repair
     - diaphragm plication
     - CABG (coronary artery bi-pass graft)
     - 3 irrigation and debridement surgeries (where they reopened his chest to cut out infected
        tissue)
5 days on ECMO
10+ weeks on a ventilator
8 intubations
1 Vascular access catheter
3 vacuum dressings
1  chest irrigation system
20+ sternal wound dressing changes and repacking
8 chest tubes
4  arterial lines
1 PICC line
1 internal jugular central line
15+ IVs
35 54 (nurse counted today) different medications
3 CT scans of his chest
1 PET scan of his heart
1 nuclear med MUGA scan,
1 cardiac catheter lab procedure
2 MRIs
countless echocardiograms, ECGs, ultrasounds, and xrays
What a trooper! BIG Hero
We are not done yet.   Jadon's chest wound has finally closed up.   He is slowly gaining strength.   The biggest challenge is still getting him enough nutrition. He is eating some, but his main source is still through IV TPN (total parental nutrition) and lipids.   At this stage, he will have to come home with IV nutrition or alternatively get the G-tube and fundoplication surgery that he was originally scheduled for early May.  As the medical staff makes a decision, we are still praying that his food intake will increase enough to do without either of the above.
 It has been a long and arduous journey.  Yet through strength not our own,  through the power of prayer,  support of our family and friends,  here we are.   It is only by God's grace and the support of those walking this journey along with us, that we are still smiling.  Big thanks.
Hospital Family Selfie!

Tuesday, 4 August 2015

More Steps in the Right Direction!

This has been a good weekend for Jadon.  His sleeping has improved.  It's funny how your perspective changes.  If someone asks us if Jadon has a good night, we will cheerfully say yes as long as:
1.  he only wakes two or three times between bedtime around 9:00pm and wake-up time
2.  he stays awake for less than 1.5 hours during his one long wake-up time (around 2 am)
3.  he sleeps in past 5 am
So, did Jadon have a good night last night?  Yes, yes he did!
Jadon sleeping soundly during a nap.  What a sweetie!
Jadon has made a lot of progress with his feeding.  He is eating more on an almost daily basis.  His main food is a smoothie combo of some sort of nutritional supplement drink thickened with an apple/pear/apricot sauce or some yoghurt.  He is also starting to eat some 'real' food.  We are now calorie counting in hopes that he will be able to compeletely get off the TPN and lipids (IV nutrition).  This would make life so much simpler and more enjoyable!

Jadon's sternal wound is also progressing well.  On Friday we had a consult with Plastic Surgery who recommended a muscle flap graft - basically cutting through the skin and muscle above the sternum (the stuff that just healed) and pulling across some of the pectoral muscles on top of the sternum.  If the sternal bone (or what is left of it) needs work done, that would be done as well.  Given that the two surgeries invloving cutting Jadon's sternum have both led to a huge fungal infection, Sara and I are (understandably in our books!) hesistant in moving forward.  The CV surgeion suggested going in for anothe debridement procedure to see if that would help first.  If not, the muscle flap graft surgery will remain an option.  So, Sunday late morning we made a quick trip back to the CCU for the debridement.  They scraped away the dead tissue and stimulated the fresh tissue to promote blood flow and, consequently, healing.  The wound looked better than anticipated and does not go all the way through.  We are looking forward to the dressing change this afternoon to see what progress has been made!

Meanwhile, Jadon is more and more himself.  He is smiling more and particularly likes when things fall or make a noise.  The last few days he has even been sitting up on his own onve again!
One of his favourite pastimes,,, washing his frogs! 

Thursday, 30 July 2015

Medical update number.. who knows what?

Once again this week has given us mixed reviews.  The last two dressing changes on his sternum have been very encouraging.  The top wound has basically completely healed, just slightly scabbed now.  The bottom wound, up until Saturday had progressed very little.  In fact, upon changing the dressing the CV surgeon decided to consult plastic surgery and discuss a muscle graft into the wound to help speed up the closing/healing of it.  During Monday and Wednesday's dressing changes, the hole is much smaller and less deep and it look like it will close up on its own in the not too distant future!

As far as eating goes, we are also making great progress.  Jadon has shown a strong appetite and interest in food.  He is still on IV nutrition as his primary means but is managing to eat enough that they have started weaning that down.  The medical team feels that this improvement is likely due to some increase in heart function as a result of the bypass done in early June.  We are praying (an welcome all others to join) particularly that he can get to the point of taking enough nutrition orally that he will not need a G-tube as was originally planned.
Jadon playing with water during a physiotherapy session up on the Starlight Lounge patio.
In typical Jadon fashion though, he has the doctors flumoxed on other fronts.  His kidney function numbers and electrolytes have been off and not following a predictable pattern.  As a result nephrology (kidney specialty) was consulted again and they also asked for a endocrinology (hormone specialty) consult.  The endocrine team is not sure what is going on but think he might have a rare complication due to his severe sternal wound and bone infection causing excess production of a form of vitamin D which in turn encourages calcium to be pulled from his bones increasing his calcium levels.  They will track this closely and if the levels do not drop they will give a drug used in osteoporosis patients.  This morning the calcium was trending in the right direction which is encouraging.  Jadon also had a kidney ultrasound and specialized urine tests which actually indicated an increase in function, which is once again encouraging.

One of our current biggest challenges is Jadon's sleep... or lack thereof.  He has typically been getting about 6 hours of sleep spread out throughout the night with waking periods ranging from 15 minutes to 2 hours.  He is not getting as much sleep as he should, and so neither are mom and dad!  We are all trying a variety of tricks but nothing has worked yet to get him to sleep more than 2 hours in a stretch.
Jadon sleeping on his stomach for the first time in 7 weeks.  He no longer has to wear his corset.  Didn't help with the sleep length of quality though :-(
So as progress is made on some fronts, the pathway is still not completely clear.  We go through a variety of emotions as issues arise, questions are posed, answers are found.  As one of the nurses once again reiterated, "With Jadon we are not following a textbook... he is writing his own!"

Monday, 20 July 2015

Moving on up!

Today was a big day as Jadon was discharged from the CCCU (cardiac critical care unit), where we have been for the last six and a half weeks post surgery, to the cardiology floor on 4D.  To some degree it feels like a bit of a homecoming as we had been on 4D for over two months before this most recent surgery.  Many of the nurses, nurse practitioners, doctors and other staff from both floors were excited to see Jadon make the transition.

While we are also excited about this next step, we also realize that there are many more questions that still need to be answered.  Jadon's chest wound - the top is healing well but the bottom still has a hole through to the mediastinal cavity.  Will it heal on its own or need intervention?  Jadon is just starting to drink a little applesauce.  How will his feeding go?  Has his reflux improved at all?  How will he get his nutrition?  Will he still need the G-tube, and if yes, how soon can he get it?  How much has his heart function improved with the CABG (cardiac arterial by-pass graft)?  Will they have to do any other interventions for this?  How soon can he get off the rest of his sedatives, and pain medication?

So many questions.  Some of these questions will have answers in days, perhaps weeks.  For others we will have to wait for months.  But today, we are rejoicing!  We are Praising the Lord!  One step in the right direction!
So cozy in mommy's arms!
Smirking as we get ready to throw coins into the fountain on our walk!
Sleeping so peacefully.  Love this kid!

Wednesday, 15 July 2015

Back Roaming the Halls

Jadon has continued to progress very well since the last setback 1 1/2 weeks ago.  He is now off all of his blood pressure medications and off the main sedative he has been on.  They have switched his pain medication to something that can eventually be taken orally and so he could get out of the CCCU.  The last two swabs of his sternal wound have come back negative for the fungal culture.  Maybe the infection is gone and we can focus completely on the healing!

Along with this, Jadon has made strides in other ways.  He has taken small amounts of an apple sauce/juice combo orally... the first food he's taken in about 4 weeks!  This is important as he doesn't tolerate feedings through his NG tube very well and so is currently dependent on IV feedings.  He has also been going for walks in his special stroller, accompanied by his IV pole!  Today he took two walks outside and enjoyed the feeling of sun on his face for the first time in 6 weeks!
So great to see his smile again!
Jadon's nurse today is an avid flower lover... and 'picked' a few for Jadon on our walk this morning!
Afternoon walk with family - aunt and some cousins from out East

Friday, 10 July 2015

Crazy Crazy Rollercoaster Ride!

Who knew that the last paragraph of the previous blog entry would turn out to be so prophetic?

Last week the focus of Jadon's care was to wean him off his blood pressure medication (singular) and wean off his sedation.  Once these were accomplished he could be transferred up to the cardiac floor to continue his recuperating.  He was making good progress on these fronts.  So well in fact that they had started him on very small amounts of feeding through his NG tube.  On Saturday Jadon was able to go on a walk (stroller ride) around the hospital. This was a high point on the roller coaster.

Sunday morning when I came into his room I saw a very different child!  His blood pressure was very low and his heart rate was very high and his chest wound was leaking once again.  It was as if a switched had been flicked.  Jadon went into full body sepsis.  They started him on a couple antibiotics and started him back on blood pressure meds.  By Monday morning he was on 3 different blood pressure meds (plural) and in full renal failure.  They intubated him and brought him to IGT to insert a VAS (vascular access) catheter to prepare him for CRRT (continuous dialysis).  A definite low point on the roller coaster.

At this point we were very concerned.  While waiting for the VAS catheter insertion Jadon started producing some tiny amount of urine.  We prayed urgently and many friends joined in.  When he returned from the insertion it was too close to shift change to hook him up to the dialysis so they decided to wait.  Jadon gradually started producing more and more urine to the point that they delayed the hook up and eventually decided that the dialysis was not required!  What an answer to prayer!

Since then Jadon got a CT to look for a pocket of infection in his chest.  He doesn't have one.  They are daily checking out and repacking the openings in his chest wound.  He has been completely weaned off of the blood pressure meds and they are once again working on weaning his sedation. Today he is almost back to how he was like a week ago Saturday.  Back climbing up the hill on the roller coaster.

We are once again cautiously optimistic.
Family portrait on the white board in Jadon's room, compliments of Jie Jie Rykauna
Jadon wearing his 'corset' to help the chest stay more stabilized as it heals.
He no longer has the IV and arm 'pillow' on his left arm.

Thursday, 2 July 2015

Through another valley... But hopefully out the other side now!

Jadon has had an interesting week, which we have now come to expect from him. We have had continued issues with his sternal infection.

After the irrigation of the wound was ended, the surgeon recommended a corset for Jadon.  This is a vest that is made by one of the CCCU nurses here at Sick Kids.  The purpose is to help hold the chest and sternum in place to decrease the chance that Jadon's incision dehisces (opens up) again.  Of course on Saturday we noticed that the bottom bandage of Jadon's was soaked through with fluid/pus from a gap in his wound.  The top edge of the wound was also leaking.  We had several visits from the CVS team and spent several days concerned about the increased infection risks.  The concern was that the bottom hole went right into the lung cavity and would affect Jadon's ability to breathe on his own off the ventilator.  It was decided yesterday that the communication was likely to the mediastinum (space between the heart and lung) and so Jadon could be extubated and the surgeon decided the wound should heal on its own.  Late yesterday afternoon Jadon was extubated and put on hiflo oxygen.  He did so well that this morning they switched him to regular nasal prongs and he is still doing well with great oxygen sats.  They are still weaning his sedation and that will keep us in the CCCU for a while yet; however, we seem to have climbed out of the valley of the chest infection.  They are hoping to start very minimal feeds through an NG tube and see how things go.

We are very happy with this little bit of progress though we are reservedly so.  There have been so many unexpected setbacks after good news in the past that we are shielding ourselves from getting too excited too quickly.  Here's to hoping and praying that Jadon will keep trending upward.

Sunday, 21 June 2015

Chest closed again...

Jadon's chest was closed on Friday afternoon.  The wound had been irrigated and debrided twice at the bedside and twice in the OR, with a vacuum dressing on the wound in between these procedures.  On Friday the sternum was wired shut and the wound stitched closed.  However, the medical team is still concerned about infection so they pulled out another procedure used only once every several years.  They are using external irrigation for Jadon' chest cavity.  Basically, they have added Betadyne (an iodine solution) to a saline bag and are running a constant flow through Jadon's chest cavity.  The solution is pumped in to the top of Jadon's chest at a constant rate, and the solution is drawn out through suction from a tube at the bottom of Jadon's chest.  The system ran for 48 hour and was discontinued this evening.  The dressing will be examined tomorrow and the hope is that they can move ahead confident that the infection has been cleared and we can move towards weaning Jadon off the ventilator and his medications.  The poor little guy has had a rough go the last few day again.  Despite large doses of many major drugs to help him be sedated and pain free, he has still been agitated quite a lot of the time.  He is not thrashing about as he was earlier which is nice, but still uncomfortable obviously... but then hey, he's got many reasons to feel that way!  The medical team has been trying all sorts of things to make him feel more comfortable.

During a stretch where Jadon was napping comfortably this afternoon, the rest of the family was able to go out for a Father's Day meal.  I ended up picking a restaurant where dads ate free!  We just had to bring proof of being a father.  I guess the four amazing kids that were with me were proof enough!  I feel totally blessed to be able to be a father to my 5 wonderful children, and to share the parenting load with my incredible wife Sara!  It has been a long and trying 4 1/2 months, but they have all been understanding and supportive, and with the help of others, we are managing to hang in there!  Thanks for all your help and prayers.

Ronald McDonald room had snacks for Dads, and the hospital provided pizza, wings, drink and a massage!