Josiah News

Hi Everyone,

Graham just left to drive back to Kitchener after saying goodnight to Josiah and dropping me off at Ronald McDonald House (RMH).  He worked remotely today from RMH and I mainly watched Josiah and pumped milk every three hours or so.  The view from our room at RMH is great at night.  The moon looks beautiful - almost full - and I can see the elevators going up and down the CN Tower.

We spoke with the doctor today.  At this point it's not looking like Josiah has an infection, though it is still possible.  If all of the tests come back negative for an infection, then it's assumed that the problem is with the heart, even though the echocardiogram didn't show differences.  The way he explained it is that Josiah has in a sense always had two obstructions:  1) The blood in the pulmonary veins goes from the lungs, down beneath the diaphragm and through the liver before going back to the heart so this in itself has been an obstruction since before birth, and 2) the pulmonary stenosis (narrowing of the pulmonary artery that goes from the heart to the lungs) has also been an obstruction.  Until now, these obstructions have balanced each other but it may be that he has become unbalanced and thus may be experiencing some heart failure.

Josiah was quite restless this morning; whenever the sedatives started to wear off he would thrash about.  They experimented with amounts and different sedatives and then he calmed down.  When he wasn't calm, his oxygen saturation would decrease and his heart rate would increase.  The night nurse just told us that they are giving him a little more support with his breathing and he seems more comfortable and he's sleeping on his own without a sedative.  They are keeping the lungs open a little so that he doesn't have to work as hard at breathing (he's still getting oxygen from a ventilator).  She explained that it's like blowing up a balloon - it's easier to blow it up when there's already some air in the balloon.  Josiah has fluid in his lungs so she thinks they may start him on a diuretic tomorrow.  They suctioned him a few times today.  The nurse will just let him sleep tonight and only give him a sedative if necessary.  It sounds like they'll start weaning him off the sedatives and the breathing support once the fluid is under control and see if he's able to breath on his own, etc.  They haven't started feeding him yet - they've just kept him hydrated.  If they don't start feeding him tomorrow then the dietitian will give him something that has all the vitamins and minerals he needs through the IV.  Some of his blood work this afternoon came back with better numbers so that's encouraging.
       
The doctor said that a team of doctors will discuss next steps in a meeting next Tuesday.  I think he was referring to next surgical options.  It sounds like we might still be here then.  Apart from missing Isaac, I wouldn't say it's too stressful right now.  I know Josiah is in good hands so that's a relief and I've been able to get some rest.  I also know Isaac is in great hands with his grandparents.  He wanted to look at a photo of Daddy and Mommy today and he wanted to take his stuffed animals with him to his grandparents.  I'm sure he'll be happy to see his Daddy in the morning and then tomorrow night after work.  Graham will bring him to Toronto on Friday night and then we'll be together for the long weekend, taking turns with Josiah and Isaac as Isaac will not be allowed in the CCCU.  I'm looking forward to giving him hugs and kisses and hoping he'll sleep at night.

I will try to write regular updates but oftentimes today I couldn't get on a computer or the Internet connection wasn't working.  It's always great to get emails from people just letting us know that you're praying for us.  It's encouraging to read.  Please understand if you do not receive a response.  Have a great night!  I'll pump once more and then head to bed.

Blessings,

Elizabeth (and Graham)