Monday, 23 February 2015

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.

Wednesday, 18 February 2015

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.

Monday, 16 February 2015

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.

Friday, 13 February 2015

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)

Wednesday, 11 February 2015

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