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!

Sunday, 14 June 2015

Cleanning out the sternal wound... again!

Jadon had his sternal incision debrided and irrigated (cleaned) this morning.   His chest has not been wired shut.  They are being cautious and are leaving the vacuum dressing on (more like in the wound) for likely a few more weeks to ensure the infection is gone and does not spread.  This unfortunately means another long ICU stay... followed by the rest of his recovery.

Saturday, 13 June 2015

Another bump on the road!

Jadon had a really rough day.  We found out early in the afternoon that he has a staph infection in his blood from one of his arterial lines (that he had already managed to pull out).  He is already on antibiotics so he should be able to fight that off.
The cardiac surgery team came by to change the vacuum dressing for the infection in his sternal incision.  It is now badly infected.  The fellow cleaned it up a bit but the plan is for Jadon to go back to the OR tomorrow to get it reopened, cleaned up and closed again.  We've been told that they typically need to go back to clean and re-close 1 - 3 chests a year.  Jadon needed that procedure done back in March following his February surgery, and now he is back once again!
As a result, his breathing has not been going well, his body became overwhelmed with the infections, and he was reintubated this evening.  So he is resting on a ventilator now.  Unfortunately, a lot of this trip through the ICU is looking very familiar from the previous trip in Feb/March... not something we wanted to relive!

Wednesday, 10 June 2015

CPAP and vacuum dressing!

Jadon has had a pretty mixed week.   His blood pressures have been soft so they can't increase sedation.  As a result he has been very agitated.  Last night he desatted (low oxygen levels in blood) several times so they put him on CPAP.  He would wake up fretting every 10 minutes or so throughout the night.  Needless to say this leads to very tired parents.  Sara and I traded off quieting duties overnight so we could each get a little time of rest.

His chest incision has dehisced (opened up) once again (as it did with his first surgery) and it's infected. .. with candida (a fungus).  He's on flucozanole and he's doing a bit better today.  They just recently put him on vacuum dressing to help clear out the wound.  Hopefully it works so they don't have to go back to the OR to clean it up.
Jadon with CPAP mask.  You can see the vacuum dressing underneath his stylish vest!

Tuesday, 9 June 2015

You'd think we would have learned!

After Jadon's surgery on Thursday, he did quite well.  He was weaning off the blood pressure meds, his chest was closed on Saturday, his fever was coming down and they were starting to wean the sedation.  On Sunday afternoon he was extubated.  We were hopeful for a short stay in the critical care unit this time through.  Unfortunately we forgot that recovery is a roller coaster ride!  Late Saturday and into Sunday and Monday Jadon became very agitated.  When he came out of sedation he would thrash about and complain. Jadon was still out of it during these times.  He would aggressively grab at his lines and moved about to the point he was very hard to hold down.  He managed to pull on his arterial line enough that it stopped working.  Seeing as it is used to constantly monitor blood pressure (which has been fluctuating wildly), he needed another one inserted.
Immediately after being extubated Jadon was on only 2L of oxygen on nasal  prongs.  Since then he has needed more help breathing and is currently on 18L of hiflo at 40% oxygen.  He has developed a fever and his infection markers are up.  His chest incision has opened up and is infected.  He is not doing great at this time once again.  Unfortunately it looks like our stay in the critical care unit will be longer than hope for.  Please continue to pray.

Sunday, 7 June 2015

Chest closed and Extubated!

This post surgery time has been significantly different than Jadon's initial surgery in Feb.  Jadon came back from the OR with an open chest but was relatively stable.   On Saturday they closed his chest, removed his catheter and stopped the muscle relaxant.   As they started weaning his sedation Jadon got quite agitated.   They kept trying to keep him calm but his blood pressure would get too low.   In one of his agitation phases last night he thrashed around enough that he pulled his arterial line out somewhat so it was no longer working.   Given that they use the art line to continuously monitor blood pressure, and Jadon's blood pressure was very unstable, they needed to get another art line in.  They managed to do that and finally around 1 am got Jadon settled somewhat.
This morning the decision was made that they should extubate Jadon so that he would be able to settle better as the sedation was being weaned off.  So early this afternoon Jadon was extubated and is currently sleeping on 2 L of oxygen through nasal prongs.
Jadon with a closed chest and on nasal prongs.  The other kids all commented on how great Jadon looked!  Much less tubes than last time around!
We are cautiously optimistic that Jadon's recovery from this surgery will continue to follow a more regular path.  We are still unsure about how much heart function he will recover but we are likely not to know for several weeks at least.  Once he is back stable on the cardiology unit we will have to discuss his feeding issues, reflux, g-tube and fundoplication... but for now we are grateful for his steady progress.

Thursday, 4 June 2015

Out of Surgery!

Jadon went in for surgery this morning.   We got him up shortly after 6:00 to do the antiseptic scrub and get him prepped for surgery.  Around 7:30 we were told that an emergency case came up over night and to expect to go in around 11:30.  We got the call shortly after 10:00 and we dropped Jadon off shortly before 11:00.  We did not know the length of the surgery but were told the OR was booked for 8.5 hours.  The total surgery time ended up being 9 hours.
Just a few moments before Jadon got the first of his sedation
Was in awe at the thickness of Jadon's medical chart - this is before today's surgery!
They successfully completed the bypass graft and there is blood flow through the artery.   He was on high levels of blood pressure sustaining meds but they have been able to wean them down enough that he does not need to be on ECMO.  They are leaving his chest open for now to allowing swelling to go down and provide easy ECMO access if necessary.  The surgeon told us with a grin "My fellow did some research and Jadon is the youngest patient ever to receive a coronary artery bypass graft at Sick Kids"  The surgeon is pleased.  We are waiting to go in to see Jadon now.

Wednesday, 3 June 2015

Another nervous night before a big day

The surgery for tomorrow is a go ahead.  They have rescheduled it for the morning as they are coordinating surgeons from several different specialties to participate and they are unsure of how long the surgery will be.  We were very thankful to hear that the team has determined that there is a significant amount of heart muscle tissue that is 'hibernating' and the hope is that the revascularization (return blood flow to the area) through this bypass will recruit at least some, if not most of this heart muscle.  This in turn should increase the function of the heart and lead to better stamina now for Jadon, and better outcome long-term.

There are however, mixed feelings.  Right now we have a happy, joyful little boy who loves his siblings, is very excited when they come visit, who brightens our life with his great smile!  There are always risks associated with surgery, particularly another open-heart one.  We do not have to be reminded of the possibility of complications... the last 16 weeks spent at Sick Kids, the countless tests, and tomorrow follow-up surgery #3 (with likely another one yet to come) are living testimony of this.

So tonight we will bathe Jadon with the antiseptic soap.  We will tuck him into his crib at Sick Kids.  We will pray for him and lift him up to the Father of the fatherless, to the Great Physician.  We will sleep on cots alongside him.  We will hand him over early in the morning to the surgical team.  And once again we will pray... and wait for the unknown, thankful for the grace of God and the prayers of His saints that we have felt for the last nearly 4 months now.

We have taken comfort from this passage in Ephesians 3:14 - 21
14 For this reason I kneel before the Father, 15 from whom every family in heaven and on earth derives its name. 16 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, 18 may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, 19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.