Another step back

Since the last blog post Jadon has had another setback.  He aspirated during a feeding and this caused him to struggle more with his breathing.   Eventually his blood pressure started to drop and his fever climbed again.   He started going septic - indicating some sort of infection.   They changed up his antibiotics again.   Later last night they decided to put Jadon back on the ventilator.  So they sedated him more once again and retubed him.  He has been resting better since then.   Now it's waiting for the fever to go down so that he can go get his diaphragm plication done.  They had to add back in an art-line ... they just removed his other one earlier in the day!

More complications :-(

Dear Jadon is having a really tough go.   We were excited on Friday when they told us they were planning to extubate him (take him off the ventilator) on Saturday.   On Saturday he was extubated but he did not tolerate it well and ended up on cpap  (oxygen via mask) fairly quickly.

Over the last few days we have learned there has been a challenge on that front.  During the heart surgery the nerve controlling Jadon's left diaphragm was damaged.   Apparently this occurs on occasion and often (not always) will correct itself over a couple of months.   During this time however the left diaphragm is paralyzed and so the left lung does not inflate properly.  This is of particular concern for Jadon because he has a hypoplastic  (undersized and underdeveloped) right lung.  So... with this he has a damaged right lung and a damaged  left diaphragm. .. poor guy can't catch a break!

The plan over  the next few days is to go in for another operation; this one a diaphragm plication in which they pull down the left diaphragm and tie it down to leave more room fur the left lung to inflate.  Apparently this is not a big operation and not too invasive.  The problem right now holding things back is that Jadon still has a fever and they are trying to get that under control first.

Today was an up and down day.   Jadon was really struggling and not doing well this morning.  He was on cpap (where he does all the breathing with a slight continuous air flow into his lungs).  He did not look comfortable, he was working hard to breathe and his color looked bad.   Around 3 they changed him back to bipap  (where extra air is blown in to his lungs when he inhales so he gets help).  He has done much better since and his color and comfort level have both improved.  They also removed his pacemaker wires and his arterial blood line so he has less and less connections and tubes into him.

Here is hoping the fever gets under control and they can get the plication done tomorrow so he can continue working his way out of the critical care unit.

More steps but not out of the woods yet

We have been rejoicing over Jadon bring removed from the ECMO  Monday evening.  He has tolerated it quite well.  They have had to put him back on some of the blood pressers which was expected.

Unfortunately Jadon has developed a fever.   Again apparently this is not completely unexpected but must be monitored closely to make sure it is not a sign of an infection.  They are icing him to help bring the temperature down and have started two courses of antibiotics in case.

On another good note. .. The surgeons went in today and completely closed Jadon's chest.   They had left it open after the surgery to allow for the swelling of the heart to go down, and after the ECMO was removed in case they had to put him back on it. They had originally anticipated the chest staying open until the end of the week but here we are on Wednesday and it is nicely closed shut.

Slowly things are moving in the right direction.   Jadon is still sedated and will continue to be so for a while as he is still on the ventilator in the critical care unit for several days yet.

A Happy Family Day

Saturday and Sunday were long days of waiting.   We were very disappointed when come Sunday morning the decision was made not to even attempt to get Jadon off the ECMO.   His x-ray showed a wet left lung still and the staff attending figured given the results from the Friday attempt it was best to give another day for the heart to recover.

This morning his x-ray of the left lung was pristine.   The decision was made to try to get him off the ECMO sometime in the afternoon.

Sara 's sister Pam flew in from Nova Scotia on Saturday evening.   This allowed me to go home Sunday to rest up (yeah... fighting a cold) and to see our kids.   Lilin had spent the weekend with Grand-maman.  The other ones had spent the weekend at friend's places.  This morning after breakfast at Grand-maman's the four kids and I drove to Sick Kids to spend the day with the complete family.   The kids were all very happy to see mom (and Aunt Pam) and mom was happy to hug and kiss her other 4 lovely children.  Sara took turns going to see Jadon with each of the three older ones. They were happy to see their little bro.

Originally planned for 12 noon then bumped back and back until about 5:00 (The surgeons at Sick Kids are so EXTREMELY dedicated.  Jadon's procedure was delayed because the surgeon was in another surgery that went longer than planned.  Long long hours)

Great news!  Jadon is now off the ECMO.   They took him off around 6 and so far so good.   He is maintaining good blood pressures and good oxygen levels.   His chest is still open and likely  will be until the end of the week.  The next step after the chest is closed is to get him off the ventilator.
So first positive step in his recovery... Though there are many yet to come.

more and more waiting

We got up this morning and found out that Jadon had had a reasonable night but not great.   He was struggling with blood pressure and pulmonary edema (fluid on the lungs).  The medical team determined that a likely source was that the left ventricle was not pumping properly which is somewhat perplexing as the left ventricle was not touched during the surgery.  Normally the right side of the heart is the one that takes longer to come tfull function but Jadon 's right ventricle is doing fairly well.

To determine if they can find the issue they decided to do a surgical procedure at the bed side.  They went back into the chest (it had not been fully closed) and stopped a few bleeding spots. They then clamped the ECMO tubing off meaning that all the blood was going through Jadon's heart and dependent on him to pump it.  Jadon did not tolerate it well as his blood pressure dropped significantly.   However they were able to complete an echo (ultrasound of the heart).   They deemed that structurally all was sound.   The tricuspid valve they had difficulty with during surgery is doing well.   So... The diagnosis is that the left ventricle is worn or from being on the bypass machine  so long.  Do they want to give it a couple more days to rest so Jadon stays on the ECMO.   To help relieve pressure to the left side of the heart and let it rest better the surgeon put in a small relief tube into the left atrium to drain some blood out.

And we wait and pray.  As of now they don't see a reason why it won't recover.   If it doesn't in the next few days they will have to explore other reasons.

Today is test day

Jadon is still on ECMO and is still having issues.   They plan on doing an echo (heart ultrasound) to try and determine why his left ventricle is underperforming.  The results of this test will determine the pathway guard but we are looking at a longer ICU  stay than we were originally anticipating.
They will be clamping the ECMO during the test so we will also see how Jadon tolerates bring off the ECMO (hopefully long enough for the echo to be completed)

A long long day

We started the day by waking up at 4:30 to get here at Sick Kids by 6:00am. Once here Jadon got another bath with antiseptic soap and was changed into his hospital gown.   He was ready for surgery by 7:30 but surgery wasn't ready for him.  He was scheduled for second surgery so we had to kill time until around 1:00om.  The challenge was that Jason could not have any solids since midnight the night before.   Hornet he was wonderful.   He enjoyed posing in the pay room on the cardiac floor (lots of new toys! ) and we walked around and around and around the hospital.  Jason even fell asleep for over an hour.   His SATs  were better than we had seen then in a long time so he went in to surgery in good shape. .. which became very important later  on.

Sara and I had lunch and walked around a bit and then went to the Ronald McDonald room where we each got a recliner in a quiet zone where we caught about an hours sleep.  We then headed down to wait in the surgery waiting room. ..anticipating news by around 7:00.  I know we say that no news is good news but... this was not the case.

Due to Jadon's heart being on the right side of his chest it took a little longer to get full access to the heart.   The major part of the surgery went well but they noticed that one of Jadon's valves was leaking.   They had to fix it and also then replace the valve from the pulmonary artery which they were not planning to do.   This made the surgery much longer.   About 9 hours in, the surgeon came out and told us that as a result Jadon's heart was weakened and he was put on an ECMO (a machine that does the work of the heart and lung).  He had just been transferred to the ICU after 11 hours of surgery.  The surgeon mentioned after the surgery that Jadon is doing a bit better than they anticipated given the challenges of the surgery and the emergency valve repairs.  We will get to go see Jadon in a few more minutes now.

We continue to appreciate your prayers and feel supported by them.

Ephesians 3:20, 21

Pre-op Done

We had a busy day today.  Sara, Jadon and I headed down to Sick Kids and arrived at 7:00.  Our first stop was the blood-work clinic where we found out that the hospital had just switched over to a new registration system online.  It caused some delays and I am sure that the IT department earned their money today!  After blood was drawn, we headed down for a chest x-ray and then up to the Cardiology Clinic.  Once there, we were ushered into a room to receive teaching about the operation and to meet some people involved in Jadon's care.  We met the staff surgeon, a surgical fellow, an anesthetist, and research associate.  A nurse practioner student was also in the room the entire time and she will follow Jadon into the OR  as well.  The  nurse educator went through the whole surgery and post -operative process with us talking about what to expect.  Overall, it was a busy but very informative day.

About Jadon's surgery:  He will be having a Tetralogy of Fallot repair.  I asked the surgeon how many were done yearly at Sick Kids' and he indicated that the surgical team likely performed around 50 Tet repairs yearly.  After a VSD (hole between the two ventricles), it is the most common surgery they perform.  What exactly is involved?

1.  VSD Repair - Jadon has a rather large (about 1 cm) hole between his two ventricles.  This means that his oxygenated and deoxygenated blood mixes.  This hole will be patched up (with a material similar to polyester, apparently!)

2.  Aorta Shift - Jadon has an overriding aorta, meaning it sort of lies above both the right and left ventricle and so gets blood from both.  As they repair the VSD, they will shift the aorta so that it properly only gets blood (oxygenated) from the left ventricle.

3.  Pulmonary Artery Stretch - the pulmonary artery (carrying deoxygenated blood from the right ventricle to the lungs to get the blood oxygenated) is thin, as is the valve between the ventricle and the artery.  This will need to be cut and a patch put in to widen it.  Given the tiny size of Jadon's valve, they likely will have to cut his valve away completely.  He will then live without this valve with very little to no side effect until likely into his late teens or early twenties at which time he will need a valve put in.

4.  Muscle Shave - as a result of his heart needing to pump so much, Jadon's right ventricle is buff!  This might be great for biceps and abs, but not so much for the heart, as it causes problems.  Some muscle tissue will need to be shaved from Jadon's right ventricle.

As a result of Jadon's advanced age for this surgery (they typically prefer the surgery done around 5- 6 months of age), the pressure differences in Jadon's heart after it is repaired could be problematic. This is due to his stiff right heart and non- stiff left heart.   To avoid complications from this pressure differential, they will also cut a small hole (a few mm) between his two atria, to act as a pressure relief valve.  We were told that his body will likely depend on this quite a bit for the first several days, but that once the initial recovery is over, this little hole often heals itself, or if not, does not cause any further problems.

So there you have a layman's understanding in layman's terms what the surgery entails.  Obviously, though it is a relatively common surgery, it is still quite complex.  The recovery time depends on the individual patient, but we are to expect about a week in the hospital.

Thanks again for your prayers and support.  32.5 hours to go!

Final Countdown...

We have not posted in nearly a month.  To be honest, this has been on of the longest months of our lives.  Since the last post, Jadon was admitted once again to Sick Kids' for another 4 night stay.  During this stay, the tune of the cardiology team changed.  They realized that Jadon's BT shunt (the procedure he had done in Vietnam to buy him some more time before his complete repair) was no longer working to the level it needs to.  He has outgrown his shunt and is in need of his complete Tetrology of Fallot repair as soon as possible.  We were initially given a date of Feb 4 for his surgery.  The problem is... he needs to be healthy for the 2 weeks before they operate.  He has only had one 2 week stretch of health since he has joined our family about 3 1/2 months ago!  We had to let them know that he had another cold, and so we have been given a second surgery date of Wed, Feb 11.  We have been counting down the days... doing all we can so that he remains bug free.  Three of our other children have had colds.  We have been quarantining, hand washing, hand sanitizing etc...  With about 54 hours left until surgery time (yes, we are counting down the hours), Jadon is so far healthy.  We head in to Sick Kids tomorrow for his pre-operation meetings and work-up.

Jadon's three admissions to Sick Kids, for a total of 9 nights, have allowed him to be looked at and examined by many doctors and health professionals.  The following are a list of specialists he has seen:
Cardiologist
Cardiovascular Surgeon
ENT (ear, nose throat)
General Surgeon (follow up on trachea-esophageal fistula repair)
Occupational Therapist
Dentist (teeth and heart have a strong medical connection - he would have had to get any cavities fixed prior to his heart surgery.  Surprisingly enough... no cavities)
Dietician
Respirologist

We truly appreciate all of the prayers that have been lifted up on our behalf.  It is truly amazing to be supported in this way.  We know of specific people in 5 continents who are praying for Jadon daily.  It truly humbles us and helps us to appreciate the greatness of our God.

This wait has been one of the hardest times in our lives.  It's funny because one of the songs I often sing to Lilin when she is dashing around or getting worked-up is "Have patience, have patience, don't be in such a hurry!"  It's easy to sing to her, more difficult to put into practice.  This last two weeks we have been wanting time to rush by so that Jadon remains healthy.  If he gets a cold his surgery would need to be delayed another two weeks... and his heart is such that he really needs the surgery now.  He is on oxygen at home here for much of the day.  If he sits around and doesn't move, his SATs usually sit high 60s, low 70s.  As soon as he moves around he drops into the low 60s or high 50s.  We were told that the doctors are comfortable as long as his SATs stay above 75!

We have been encouraged by the words of Isaiah 40.  The italicized part shows us the care of our loving God, particularly for the young like Jadon.

¹⁰ See, the Sovereign Lord comes with power,
    and he rules with a mighty arm.
See, his reward is with him,
    and his recompense accompanies him.
¹¹ He tends his flock like a shepherd:
    He gathers the lambs in his arms
and carries them close to his heart;
    he gently leads those that have young.

For Sara and I, we have been bolstered by the last verses of the chapter.

²⁸ Do you not know? Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
²⁹ He gives strength to the weary
    and increases the power of the weak.
³⁰ Even youths grow tired and weary,
    and young men stumble and fall;
³¹ but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

Thanks again for your support.  Continue to pray for Jadon's health for 54 more hours... then pray for a successful surgery and good recovery.