Blue Baby

We are writing this in the basement of RMH as we are doing seven loads of laundry.  Tonight the nurse on duty has Josiah as her only patient (she is training a new hire, so she only needs to provide periodic support to them).  This meant that we could leave after we setup his 9:00 PM feed and won't need to return until first thing in the morning.  This is an incredible blessing, as we needed to do laundry, but also needed to organize the contents of our room to prepare for transport back to Kitchener next week.

Josiah had another busy day, and is looking kind of funny too.  Unfortunately he has had thrush in his mouth, and the previous medication didn't seem to cure it.  So, he's on gentian violet three times a day for the next day or so.  The medicine literally is the colour of writing ink, so Josiah looks like he just chewed on a pen.  It also means his hands are blue from sucking on his fingers.  Thankfully he will be off the medication by the time he leaves the hospital.

This morning Josiah's sats were all over the place, even going to the high 90s during his stroller ride, even without assistance of oxygen.  On the other hand, during some moments of sleep he had sats in the 70s/80s with oxygen.  They are trying to get him on a baseline level of oxygen that provides consistent sats, so that we have the proper oxygen level for him when he returns home.  His ideal sats are around 80 and over 90 is too high. 

Josiah did well during his physio this morning.  We'll take some pictures with the physiotherapist tomorrow in order to make an instructional brochure for us. 

At lunch time we worked with the OT to spoon feed Josiah some fortified rice cereal.  He did surprisingly well, and the OT seemed genuinely impressed with the performance.  It was pretty messy affair, between the gentian violet and the rice cereal.  However, it was great to see Josiah happy and enjoying tasting food.


We also met with the dietician and pharmacist to discuss feeding and med schedules for Josiah.  The dietician is thinking we can adopt a "feed every three hours" schedule, but skip the 3:00 AM feed.  The pharmacist showed us a proposed schedule that includes 13 different medicines (some taken a number of times per day) that starts at 5:30 AM and finishes at midnight.  Thankfully the dietician and pharmacist had mercy and will allow us to sleep from 1:00 to 5:30 AM!  We will continue to work with them to optimize these schedules to make them as "home friendly" as possible, but unfortunately there are certain spacing requirements for meds and feeds, so there is only so much wiggle room with the schedule.

Elizabeth met with the lactation consultant mid-afternoon and discussed how best to wean her pumping.  It was a difficult decision, but it is unfortunately not a realistic option to keep pumping at home in light of the med and feeding schedules being proposed.  Thankfully we have been building up a large supply of pumped milk which we can take home with us.  We were recently blessed with a freezer to use at home to store the milk when we return.

Later in the afternoon Elizabeth changed Josiah's NG tube and Graham gave Josiah his 6:00 PM enox shot in the leg.  Graham had a practice session with the pharmacist earlier in the day, and we both read the NG tube literature earlier too.  Graham will change Josiah's NG tube early next week most likely, so that we both know how to do it.  We even squeezed in a bath for Josiah between the NG tube change and the enox. (Elizabeth here - by the way, Graham was a pro on his first enox shot!) 

Elizabeth's parents came for a brief visit tonight and shared in a meal with us.  It is always great to have familiar faces in the room for Josiah.  He is filled with lots of smiles despite all the challenges he faces right now.  It's nice to share those smiles with others.

Thanks so much for your continued prayers.

Blessings,

Graham and Elizabeth