Friday, July 2, 2010

Progress!!!! and a Big Girl!

Sam had his monthly review on Wednesday, which is kind of like getting a warrant of fitness for a car - working through each individual thing he has going on and seeing what's up. Well he is generally doing pretty good, but has low iron levels. So on Thursday 8 he will be in hospital all day having an iron infusion. It was also decided to adjust his TPN so he is having less fluids, but a higher concentration of nutrients/glucose etc.. So from tomorrow he will be only on TPN for 15 hours and we will also increase his GJ feeds to 13 ml/hour for 20 hours. So it's a bit of an adjustment but needed to cope with his demands as a growing boy - he is now 7.8kg and 70 cm long. Still very small for his age, but feels more like 20kg when carrying him with his pumps and oxygen cylinder.

The exciting news is that on Wednesday night we did an overnight oximetry - that's when he has a probe taped to his big toe that feeds and records his O2 levels and heart rate to a monitor. He has been on .25 l of oxygen (1/4), but now we were testing him on 0.125 (1/8) and he did great! The goal is to have above 94/95% saturations, and he had 98%! PLUS he has a cold/streaming snotty nose, so it's a really good result. So we've reduced his oxygen and the plan is to now do an oximeter test on room air - NO PRONGS, to see how he fares. At this stage it's likely he may be able to be off oxygen during the day, but put him on a very low flow at night. So once he throws this cold, our lovely home care nurse shall drop in the oximeter machine again and we shall do the test.... but for now we're really encouraged by this.

Today is Jasi's birthday, so we started with our family ritual of birthday chair (thanks Matt & Helen for that ritual)/special breakfast before school. The girls are a buzz as it's the last day of school and cousins/friends coming this afternoon,
followed by ice skating tomorrow. This afternoon we had a registered nurse with us, so I was free to just be with the family and friends as we celebrated Jasi's 9 years..... where has that gone?!? The lovely Katherine sorted out Sam and it is so amazing to have this help and to be able to totally focus on something other than Sam, knowing he's safe and happy.
Better get two little girls to bed ready for a big day on ice. X S


Lisa Bouw said...

Hi Jasmine
Happy Birthday
how are you? i am fine
what did you get for your birthday?
Love Lisa Bouw

Anonymous said...

So thrilled to hear that Samuel is making progress...yay for the idea that he could be oxygen free!!! Bring it on!
Happy Birthday to Jasmine.


Marybeth said...

Happy birthday to your daughter!!
I love the new picture on your blog, and the progress he's making!!!
Stay strong!

Nicholls's said...

What a wonderful picture of a (prong-free) very special boy which speaks more than words can say. M&S

Viv said...

The "no tape on his face" look in your new pagetopper is STUNNING! What a delightful little man:)