Eyes Open!

Once again, it is wonderful to see my boy's eyes!  They stopped the muscle relaxant this morning and Josiah seems to be tolerating it.  His sats and NIRS were a little low at times but when I left him tonight his numbers were better.  He has seemed quite restless and his feet move a lot but it sounds like that's normal behaviour after coming off of the muscle relaxant.  He is still on a lot of sedation so although his eyes were open, they still looked glassy and he wasn't focusing too well.

I met with the nurse practitioner today.  She told me previously that she needed to have a talk with me regarding the time he was on ECMO.  There are followup protocols for kids who have been on ECMO.  First, he will have a hearing screen done before he leaves the hospital.  Some children have hearing loss as a result of ECMO.  Secondly, he will see a psychologist at SickKids about a year after being discharged in order to check his developmental progress and plug him into any resources he needs.  We're clearly praying that the results of these screens are positive but we're also so thankful that he has access to these resources and any help he needs.  If he hadn't gone on ECMO for those few hours we would have had to wait to see if one of his other health care providers had any concerns in order to be referred to a psychologist even though his saturation levels were much worse when he wasn't on ECMO.

I've hesitated whether or not to write the above information because I really don't want everyone trying to figure out if Josiah has developmental delays or asking me if he's hitting his milestones.  I don't need that stress.  However, I do want to give God the glory for all the good I see coming out of a bad situation.  Granted, there are a lot of risks involved with ECMO, but in Josiah's case I have a list of benefits that came his way and for that I am truly thankful to Jesus.  Also, this information will help you to pray for specifics. 

I also met with the EP (electrophysiology) fellow this afternoon.  They stopped the medication for Josiah's arrhythmias yesterday; however, the medication has a long half-life so it will be in his body for months.  They had found at least three different arrhythmias in Josiah's heart that happened because he was stressed.  Though he hasn't had the arrhythmias for a couple of days, he told me that there is at least one short circuit that is ready to go off and these often don't go away on their own.  It's not a big emergency if it goes off; the heart rate would be in the 160s or 180s but it didn't seem to affect his pressures or other numbers.  It would just tire out his heart which is something he doesn't need.

At a minimum the plan for home would be for me to check his heart rate once a day.  He told me this would be easier to do with a stethoscope.  (Note: I will feel very cool if I get to have a stethoscope).  There is also the option of having medicine and more testing.  He was leaning towards medicine but I'm thinking it would make sense to wait and see first.  Of course, if the arrhythmia happens again in hospital, it probably means we need medicine.  This is something else to pray about.            

Graham and Isaac will head here tomorrow night for a weekend together.  It will be great to see them.  It's now time to pump and then put the light off.  This schedule is tiring so I'm going to try to have a nap during the day while I can.

Thanks for your prayers!

Blessings,

Elizabeth