Reason to celebrate

Josiah is six months old today!  Graham took some photos but I haven't seen them yet.  Graham is with Josiah now, Isaac is sleeping in his bed and I am typing on a chair in the washroom. 

The first part of the plan today was to increase Josiah's propranolol to the correct amount for his weight.  He started on this medication after his tachycardia and arrhythmia the other day but they always start on a small dose first to see his reaction.  He is now at the correct amount.  This means that Josiah's baseline heart rate is now lower.  Today the baseline was in the 120s but the nurse said it could be lower tomorrow.  I actually saw it at 109 yesterday for the first time.  The nurse told me that we can't assume Josiah is not mad just because his heart rate is not as high because this medication should stop it from going too high. 

Next, they decreased his continuous lasix infusion to prepare for the transition to intermittent doses.  Unfortunately Josiah did not have a good afternoon.  At one point it seemed like he needed to be continuously suctioned as they would remove his secretions and then he would cough up more secretions.  This is probably obvious to most people reading this but I asked the nurse yesterday what the worst part of being suctioned is.  Not surprisingly, not being able to breath came out on top.  He has a big tube down his nose to his lungs and in order to be suctioned, he needs to be removed from the ventilator so that a small catheter can go down the tube and get the secretions.  It's sad to think that he has to have this feeling so many times a day.  The nurse thought he was sensitive to the lasix wean so he was given an extra bolus to help him and his ventilator settings were turned back up again as he was desatting.  When I left he was back on 40% oxygen, with a peep of 7 at a rate of 25.  He also needed a dose of ativan to help calm him down.  His temperature was near 39 degrees when I saw him but it was coming down.  

The doctor ordered the morphine wean so that would have started last night or this morning.   

His main nurse today is one of the charge nurses.  She last had him in April when he was in the CCCU for a few days.  She was showing me how to make his bed so that it has the least amount of blankets and rolls in order to try to keep him cooler.  Typically most nurses always give him three or four rolls but she said that one behind his back is enough.  She also said that she wants to teach me lots of things tomorrow so I'll know how to do them myself and/or advocate for them to be done.  She is a lovely nurse from England.   

I was thankful to speak with the staff physician today.  He explained that the turbulence in Josiah's veins and confluence area means that there is narrowing.  The MRI and catheterization (that they are hoping will happen on Monday) will give them a much better idea of what is happening.  Both of these procedures can actually happen one after the other in the same room so he can remain under anaesthesia for both.  The turbulence might explain Josiah's desats.  If more blood goes to his lungs it would start to build up due to the narrowing in his veins and he would desat.  I don't yet know what the options are if this is the case but I will wait to hear the results next week.   


I am in trouble.  My 22 month old is already outmanoeuvring me.  He wanted to take some animals down to the kitchen at lunch time.  Daddy said he could have two and he said he wanted five.  I said I needed to be able to carry them back and he immediately said, "pockets."  Grandma F. told me that on Friday he folded over the pages of a book and made it fly, saying it was a butterfly (a great opportunity to teach him about caring about books).

Graham is back.  He said that Josiah is sleeping peacefully.  It is time for us to sleep peacefully.  Thanks for all your prayers!

Blessings,

Elizabeth