Thursday, 21 May 2015

100 Days... and still waiting for answers!

One Hundred Days.  This is how long it's been since Sara and I woke up very early in the morning on Wednesday, February 11 and drove down to Sick Kid's with mixed feelings and emotions. 

On one hand, Jadon was not doing well.  His SATs were usually in the 60s, often dipping lower.  He was often short of breath.  He had had one cold after another which had necessitated delaying his surgery.  He needed to get his Tetrology of Fallot repair.  We were relieved when he finally went into the operating theater.  On the other hand, we had been told about risk factors.  We were told that while the surgeons at Sick Kids perform many TOF repairs yearly, there was always some chance of complications.  It was hard to think of this wonderful brave little boy going under the knife.

Here we are, 100 days later.  Jadon's surgery had many complications.  Jadon spent time on the ECMO.  He has been intubated 7 times (three surgeries and 4 imaging procedures).  He has had countless needles, blood work, medications, x-rays, echo cardiograms, ultrasounds, pokes and prods.  He has been presented on surgical rounds at least 4 times.
Jadon with some of his 6 (and counting) Bravery Bead necklaces
His SATs are much better.  He is usually in the low 90s.  However, as we learned a couple weeks ago... while the surgery fixed the piping to a large extent, the pump has been damaged.  How badly is the pump (heart) damaged?  This we still do not know.  Jadon has had 4 imaging procedures over the last week, a cath lab, heart MRI, MIBI nuclear med scan and a PET scan.  The information gathered will be processed and Jadon will once again be presented in surgical rounds on Monday morning.  We should have a plan by Monday afternoon.  If the medical team feels that Jadon's heart dysfunction is due mostly to 'hibernating' cells, then a bypass surgery will be scheduled to return blood flow to the area.  This will improve the effectiveness of the heart's pumping, and Jadon's long-term outcome and quality of life.  On the other hand, if the medical team feels that the dysfunction is representative of dead cells, then his heart function will be managed with medicine, and the fundoplication surgery (for his reflux) will be rescheduled and we will move ahead with that.
Jadon giving eye drops to his stuffed dog!

Until Monday, once again, we wait... for answers, for a plan.  We are hoping and praying that the heart dysfunction is due to hibernating cells... and that yet another surgery can restore function.  This has been a very long roller-coaster ride with many emotional ups and downs.  It has been tough on Sara and I.  It has been tough on our other four children.  It has been tough on Jadon.  It has been tough on our support network - family, friends, church members.  Yet, we are able to smile and to rejoice in the Lord.  Habakkuk 3:18, 19
Family Selfie!
Still smiling!  Playing with Sara's glasses!

Wednesday, 13 May 2015

A mixed bag today!

Jadon was scheduled for a morning brain MRI (this is a routine follow-up for all children who have been placed on ECMO, which Jadon was for 6 days post surgery) and a cardiac cath lab to examine the blood flow of his coronary arteries (provide blood to the heart to allow it to pump).  The morning was a bit stressful as there was some miscommunication that at one point almost led to the tests being postponed but eventually they proceeded.  Jadon had to be anesthetized and intubated for both procedures which were scheduled back to back for this reason.  He was brought in around 8:30 and we were able to go see him in the recovery room around 1:30. 
The Good:
He was already awake, with a smile on his face and eager to get going.  Despite having both these procedures today and being anesthetized for about 4 hours, Jadon had lots of energy this afternoon.  He was most upset with not being able to get up in his crib for the first few hours to allow for his leg entry point to heal.  After supper, we went to the play room on the cardiac floor and Jadon played around standing up for nearly 30 minutes.  He actually took a few unaided steps... his first since Feb 11, which was very heartwarming to see!
The Not so Good... short term, but maybe for the better long term...
The diagnostic catheterization showed a problem with his left coronary artery. There appears to be a blockage. A cardiac MRI has been booked for Friday to assess the myocardial (heart) muscle of the ventricular septum (wall separating the two sides of the hear) and see if the muscle is fibrosed (permanently damaged) or relatively healthy. It appears that Jadon suffered a heart attack during his big OR in Feb. This info, along with his entire medical history, will be discussed at another big meeting of the minds to see if bypass surgery (as Rykauna said, "He sounds like an old man!") could benefit him. As the attending doctor told us, "This is not textbook.  There is no textbook to tell us what to do.  We are in uncharted territory here, so we will get lots of medical advice from doctors with many years experience."  This decision will let us know if they will open Jadon up once more for open-heart surgery, or work on trying to support his cardiac function with medication and hope that it will improve with time.
Meanwhile, as a result of this new finding, the general surgeon has put his g tube/fundoplication/hiatial hernia repair surgery on hold until his heart issue is sorted out.
Jadon working with the physio-therapist earlier this week

Sunday, 10 May 2015

Home for a Happy Mother's Day Visit!

Jadon was given a day pass so he could come home for a few hours so we could celebrate Mother's Day together as a family.  I drove down to pick up Sara and Jadon and brought them home.   We had lunch together and a great visit.  The kids were able to give Sara their mother's day gifts... soap, painted mug, pictures and flowers ( Logan's chocolate strawberries were delivered to the hospital on Thursday).  Jadon seemed to remember some of his toys and enjoyed playing with his siblings.
 We also enjoyed a nice walk.
So nice to enjoy this previous family time and reprieve before the hectic week full of unknowns that lies ahead.

Friday, 8 May 2015

Time, time, time

The cardiac cath lab procedure for Jadon, planned on Thursday, was postponed and rescheduled for next Wednesday May 13.  The doctor was called away on an emergency procedure at Toronto General.  This means that we sit and wait for another week, before determining if there is any 'fixable' issue with Jadon's heart - particularly the left ventricle (which was not operated on at all).
We are currently at day 87 since first going in to Sick Kids on Februrary 11 for Jadon's surgery.  There is no denying it... it has been a really long haul!  Some weeks go by faster.  Sometimes we feel like we are in a 'new' routine of going to school and work and visiting the hospital and shuffling the kids and rides and it feels like it's sort of normal.  At other times it just feels plain long!  As my mom put it last week... we're sort of past the patience stage, and into the long suffering!

On a positive note about time... it's hard to believe but yesterday was the 3 year anniversary of our Gotcha Day for Li Lin, and today is the 3 year anniversary of the official adoption day.  We were at the hospital yesterday and the other kids were reminiscing about how they felt the morning of the day we were going to get Li Lin.  She was tickled pink (her absolute without a doubt favourite colour!) to hear once again how excited they were.  We celebrated with donuts from Tim Hortons.  A simple celebration but one we were able to share as a family.

So now, we wait.  We should have a much clearer picture of the week ahead once we get the results of the cath lab on Wednesday.

Wednesday, 6 May 2015

A surgery date... but more diagnostic tests first!

Jadon has been gaining strength over the last few days.  He has had a good week.  His mile-wide smile is back and so is his teasing personality.  He really enjoys physio and occupational therapy.  He has been going down to the gym - the Tie Domi and Friends Rehabilitation Clinic.  He rides little bikes, bowls, plays with bubbles and other toys.  He even stood up on his own for about 3 minutes on Tuesday!

On the feeding front, he is still proceeding slowly.  He can take small amounts of thick liquids/thin purees.  He really enjoys ice cream!  He took a couple of bites of noodles with Alfredo sauce for supper yesterday.  He still has significant reflux, and his surgery for the fundo-plication, hiatial hernia repair and G-tube insertion is currently scheduled for Friday, May 15.  There is an anticipated at least two week recovery, given the state he is in.

The surgery however, may need to be pushed back.  Today the medical team talked to us about the function of Jadon's heart.  We knew that his left ventricle in particular, was not working well.  He is on heart medications to help his heart adjust to the new normal.  We were told today that it is possible that there is a physical cause to the malfunction.  There may be some damage to one or more of Jadon's coronary arteries.  So... tomorrow he is scheduled to go in to the cath lab for some imaging to see if they can identify any problems.  If they can... it would mean another surgery to repair the problem.  If they can not identify any specific physical issue, he will continue to be treated with the heart meds and hope that time will help the heart improve its function.  So, while ideally we do not want another surgery, in this case if they can find a problem and are able to fix it with surgery, it would be better for Jadon in the long run.

Of course, any heart repair would be done before the fundo-plication as this would take precedence.  We continue to appreciate your prayers and support for Jadon, for us, and as well as our other children as they are all starting to finding this process really long (12 + weeks!)

Thursday, 30 April 2015

Another month... another surgery coming up!

Jadon's cardiovascular system is working quite well.  He has been oxygen for almost two weeks and is comfortably maintaining SATs in the mid 90%s and his nurses keep commenting on how clear his lungs sound.  That is great!  We have been able to go on walks with Jadon around the hospital.  Since he is not connected to oxygen, it is easier to make our way around without wheeling the oxygen tank with us.  Jadon is still dependent on IV feeds and so the pole has accompanied us around.
Happy to take a walk around the hospital!
However, he is able to take some food (yogurt-formula combo) and so is able to be off the IV feeds for a few hours a day.  Yesterday Sara was able to walk with Jadon, sans IV pole, all the way to the Eaton Center for a bit.  It felt great to be 'normal' for a few hours.

Jadon still suffers significantly from reflux and there is concern about him aspirating food leading to a lung infection.  He is on several medications for this but none are doing the job.  It has been decided that Jadon will need a fundoplication (they tie part of the upper stomach around the bottom of the esophagus to help close off the hole and decrease the reflux), as well as fixing his hiatial hernia, and giving him a G-tube (feeding tube directly into the stomach).  We will find out more early next week as to exact surgery time.  The medical team figures that this will help him with his feedings and allow him to get enough calories to start putting some meat on his bones, which will further give him strength and help his recovery.

So, back under the knife!  We are thankful that the fundoplication and hiatial hernia repair can be done laparoscopically (through a small incision with a long fiber optic cable system, rather than a large cut).  This should decrease the recovery time for Jadon and hopefully hasten his way home!
Jadon really loves splashing in water and his siblings were happy to join in!

Wednesday, 22 April 2015

Breathing on his own... but not able to feed!





Jadon is now completely breathing on his own!  As of late Monday, Jadon had all oxygen turned off and his nasal prongs removed.  Since then, he has been able to maintain SATs in the 90s... which is wonderful and absolutely great!  Sara even sent a picture of his SAT monitor showing SATs of 98% sometime overnight on Tuesday.  This is a little guy who had SATs sitting around high 60% when we finally brought him in for his surgery!






With this development, Jadon is also gaining strength.  He will sit in his bed unaided for over an hour at a time.  He has been enjoying his stroller rides out of his bedroom, to the point where he is often unhappy if he is not out and about.  For the last couple of days, he has had to do some of the work himself.  He has been brought a ride-on toy from the physiotherapist and he was thrilled to be able to sit on it and move around.  Now we had to do most of the pushing to get him moving, but his little legs are working, and they will gain strength quickly.
 
The current challenge is his feeding.  Since early last week, Jadon has been retching/gagging whenever food has been placed down his NJ feeding tube.  After some discussion among the medical team, it was decided that Jadon will likely need a feeding tube going in directly through his belly into either his intestine or his stomach.  Sara had to go to training to learn about the function and care of the G (gastric... into the stomach) and GJ (gastro-jejunem... through the stomach into the intestine) tubes.  However, before they proceed, the medical team wants to make sure this will solve Jadon's problems.  Eventually the NJ tube was taken out (nose to intestines) because he was often retching and gagging, and an NG (nose to stomach) tube replaced it.  The hope was he would tolerate his medicines and feeds through this one.  However, after about a day, he was once again gagging and retching.  Today they pulled out all the tubes and have decided to give him a break for a bit.  He has been getting his nutrition through IV (tpn and lipids) over the last several days, and they will continue with this as they determine the best course of action.  His medicines have all been reverted back to IV as opposed to oral, with the exception of his heart medicine!  This one must remain oral, and so he had his first dose today with a little bit of yoghurt.  So far so good, but we are praying he will be able to keep it all down.  Hopefully they can determine his issues with feeding so we can get nutrition into him and hopefully bring him home soon.
Jadon's purple lips are a result of medication for thrush.  We don't care about the colour of his lips given the amazing smile!