Quite the day

Josiah is stable and sedated in CCCU but it's been quite the day.

He had a great night last night.  Apparently the night nurse fell in love with him as he gave her his amazing smiles and was even laughing.  I was able to hold him yesterday and they told me that I could probably start nursing him this morning.  I arrived around 9:00 and the day nurse had just given him 30mLs of my milk in his NG tube as he wouldn't calm down.  The milk calmed him down so I tried breastfeeding and the little chunk took 175 more mLs to make a total of 205 mLs.  You may recall me writing that their goal was 90 mLs!  The little boy knows how to eat which explains why he doesn't look like a heart baby.  The nurse said that 8 out of 10 heart babies can't breastfeed so we praise God that he learned to do it so well! 

After his first feed I went back to RMH to play with Isaac.  After giving Isaac lunch, I went back to the hospital for the next feed.  Josiah's arterial line had been removed and he was being moved to 4D, the cardiac ward, as he was doing so well.  We probably arrived around 12:15 or 12:30.  After the nurse took vitals I fed him around 1:00 and he took 105 mLs.  The nurse practitioner came to see him shortly thereafter and during her visit he threw up most or all of his meal.  I left around 3:00 to go back to RMH to pack in order to stay with Josiah overnight as he's in his own room on the ward and it's basically expected that a parent stays in the room.  I was back at 4:00 to feed Josiah.  He took 200 mLs and then I changed his diaper.  He was hiccuping. 

I left him around 5:00 to switch with Graham and watch Isaac.  I went back in a few minutes later to get my wallet and the nurse was just calming Josiah.  I switched with Graham who then called me about 10 minutes later to say that I should come back.  The nurse had been holding him and he was quiet when his saturation levels suddenly dropped very low.  By the time I arrived there were around 8 different people in the room and CCCU had been called.  Josiah was crying and struggling to breath and his oxygen saturation levels were low.  They were at least down to within the 30s.  I just held his head and sang in his ear while everyone else did their jobs with oxygen and needles and IVs, etc.  He was moved to the CCCU where they tried to stabilize him but eventually the doctor decided they needed to intubate him.  They sedated him and gave him muscle relaxers before they intubated him.  Eventually he was stable.

They took xrays and did bloodwork and he had a very long echocardiogram.  They decided to give him some blood as his hemoglobin was low.  His lungs looked great on the xray and his echo did not show any reason for what happened.  I told them that this episode looked the same as what had happened at home in Kitchener.  The doctor thinks he needs to have a surgery (it sounds like it might be the first surgery that we thought we'd skipped).  This will be discussed with all the doctors and surgeons on Tuesday.  

Graham called Isaac's Aunt who came to pick up Isaac along with his Grandma.  He'll stay with his Aunt and Uncle and cousins for the rest of the weekend.  We managed to get caught in a heavy rain when we walked back to SickKids to say goodnight to Josiah.  He was waking up a little and thrashing around so he was put on more sedative.  He looks so different with the tubes in his nose and all the tape keeping it in place.  He was sleeping calmly when we left him.     

Well it's definitely past my bedtime and I'm a little tired. :)  God is in control and Josiah is in His hands.  God has also provided amazing doctors and nurses to care for him.  Thank you for your prayers! 

Blessings,

Elizabeth and Graham