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
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