Toronto Day 23

A very long day today in hospital prison. Noah was being his usual cruddy self this morning...well on the transplant unit, and with H1N1 flu rampent, this calls for high alert. So, although I tried to convince the nurse that this was "typical Noah stuff", she sent an NPA, which meant Noah was put in isolation. The only thing worse than being in hospital is being in hospital under isolation...especially when my very active boy who is quite used to our little routine of walks and playroom doesn't understand why suddenly we can't leave the room. Plus everyone was getting nervous about the surgery scheduled tomorrow if Noah was actually brewing something. But the rapid viral test came back negative, so isolation was lifted and tomorrow is still a go.

We have also added number 6 and 7 to the list for tomorrow...

6. Opthamology will be taking a look at the back of Noah's eyes (a way to check for metabolic diseases). Thankfully they have agreed to do this while Noah is under anesthesia (for anyone who has seen this done, you will understand why I am glad Noah will be asleep!).

7. A skin biopsy may also be added to the list to test for MPS diseases if metabolics is in agreement. This is still up in the air.


We also discussed Noah's line access a bit more, as I brought up my confusion with what we had heard back home to what we are hearing here. It seems that this is still a question mark. The team explained that the ultrasound cannot determine for sure how accessible those vessels really are, although they did show definate narrowing of his major vessels and some clotting. Further contrast studies would need to be done. But he did not think that it was the very dire picture that we were painted back in December. So it seems that this is all still unclear. Hopefully this surgery will help us decrease Noah's dependency on his line.

Please keep us in your prayers tomorrow. No matter how many times we have done this, it is never easy.