these are the people in our neighborhood (cardiology lives across town)

We continue to learn a lot about Ford from, and are being kept busy with Stroke Team, Thrombosis, Neurology, Immunology, Infectious Disease, Physiotherapy and Occupational Therapy. More has happened with those services in the last week than could in a month in Vancouver - they have so many more resources at this hospital! It's kind of great.

Someone from Thrombosis asked me yesterday "and what's happening with Cardiology?" and I can only say "I don't know". We haven't seen Dr. Dipchand in over a week.

And still, Ford continues to do relatively well, for Ford, having been moved to a "step down" room on the ward on Friday. His milrinone and morphine infusions have since been stopped (they've brought the enalipril up to the maximum does and he's on oral morphine now, weaning doses) and today he may get moved into a private room. They're also weaning his oxygen. He is still on ganciclovir for CMV, and as long as he's getting that, he needs to keep his PICC line and stay in the hospital. "Stay in A hospital" Dr. Mendelson, our cardiology fellow replied when I asked about it, "I'm sure you're anxious to get home". When I reminded him why we came all the way to Toronto and described Ford's so-far-life-long up and down cycle that never really gets up and out, he said he will be checking in with Dipchand, as did the staff cardiologist this week, Dr. Russell, as to how long she wants to "wait and watch". On that front, we're still somewhat confused.

Meanwhile, he's still febrile - it's coming on a month of daily high fevers. Here he is sleeping sweetly with his signature bag of ice on his head:



While I'm uploading pictures, here is the before mentioned "zamboni shelving unit" with the graffiti-d Happy new year! message that is at the foot of our bed, because it's just so darn funny:
(our room has actually been much improved since Mike and Myia brought us a bag of red, orange and yellow fabric and saris to drape over the murals and logos - much cozier now).

Two new blood clots were discovered - one in his jugular vein and one in his BCV, despite being on the anti-coagulant enoxaparin. Dr. Elbers, from stroke team, ordered blood work to investigate whether he may have something in him that makes him predisposed to clotting and ordered a head CT to make sure the clot in his brain hadn't worsened. It hadn't, and in fact both the clot and the bleed were pretty much gone.

Thrombosis doesn't think there is anything wrong with Ford, that it's just the number of lines that keeping being put in and out of him that are causing the new clots to form, but are doing their due diligence with the blood work anyway.

Immunology is also covering their bases, testing for any genetic defects that would explain his chronic fevers and infections, particularly CMV as it is uncommon in kids who aren't immuno-suppressed. That said, they don't anticipate finding anything and think the infections are just a result of being in the hospital for so long.

He is scheduled to get a GJ tube in the first week of January - which will mean the NJ tube in his nose will come out! When it does, we will be able to see his whole face, with no tape and no tubes (as long as no other tubes get reintroduced in the mean time - fingers CROSSED) for the first time since the day he was born. The thought is so wonderful I can't bear to even think it for long. I hope I hope...

Laurie, the most excellent OT, has started giving Ford some (*very small amount of) food once a day BY MOUTH. This is also terribly exciting. Ford lost his ability to suck with the stroke and hasn't been able to take anything by bottle since, or suck on his once beloved soother. But it turns out he can take some food by spoon, or cup. He certainly hasn't lost his interest in food and has LOVED getting his daily tablespoon of it. He is still gagging and vomiting as much as ever, so he can't keep it in his belly long, but the satisfaction of eating seems to keep him not minding the pain of throwing it up.

Oh Ford.

So there has been good progress this week though we otherwise feel kept in stasis while they wait and watch and watch us wait...