Wednesday, June 03, 2009

Toronto Day 2

Today was a busy day with lots of bloodwork and almost 3 full hours worth of ultrasound. They ultrasounded every major organ and vessel. Needless to say, we had all had enough by the end of that ordeal.

We met the surgeon (Dr Wales) who heads up the GIFT (intestinal failure) team. We were instantly put at ease. He had definately done his homework on Noah, which was a refreshing change. And so we are quite happy to have Noah under his care. His immediate concern was the bleeding from Noah's stomach that continues to come and go. Despite all the acid blockers he is on, his stomach ph is still quite acidic. And so he was started on IV pentoprozole this morning. Lots more tests to come over the next few days. Our big issue right now is that the hospital is refusing to let us do Noah's ethanol locks. We are very frustrated and this will certainly not go down without a fight. The last thing we need is for Noah to end up with a line infection over this trip, and this is causing us to question whether we have made a good decision in coming here. Please pray that we can come to some sort of agreement.

It's going to be some very long days here. It's so difficult to sit in hospital with Noah when he is busy and feeling well. Thankfully there is a nice playroom right on the ward that is always open with internet access. I think this will be our saving grace! Today was their summer toy drive, and the playroom was turned into a free toystore. Each child got to go on a mini shopping spree. Although Noah was in ultrasound during that time, he ended up with quite the load of toys in his room.

We met a family that I have gotten to know online through a TPN support group. They are also inpatient on the same ward. it's nice to have a support available. But we miss our hospital family terribly and it feels very alien to have strangers care for our son. Although the staff all seems good, it will take me a while to trust them.

For those who have been asking...we are on 6A, in a room with a nice view of the atrium. We also have a room at the Delta Chelsea, just down the block from Sick Kids, and are on the Ronald McDonald House waiting list. The list is not long, so we should have space there soon.


Anonymous said...

Try not to second guess your decision to go. God is in control, he opened this door, and He will see you through. I am so sorry that you are having to fight this, but God will give you wishom as you make decisions. He is Noah's Defender and He will take care of him. Love

Anonymous said...

So glad for your blog and that you're able to post regularly so we know how you're doing and how to pray. We'll be praying about the ethanol locks, and for encouragement for you in the long days. Thinking about you and praying for you often.

Kim said...

I, too, am glad for you updates. We will pray that the docs will see the value in the ethanol locks and let you do it. And, I have to agree with your mom not to second guess your decision. May you find peace and comfort and begin to feel more comfortable in your situation. Much love and special hugs to my Bean (we miss you terribly). I hate knowing you are in a hospital, but I can't just come up a visit on a break.

Anonymous said...

Thank you for your update. I am sure it must be difficult to settle into a new place, with a new team, when you have developed such strong relationships with your medical team back home. And while it's wonderful that Noah is in good health, I'm sure it makes it much harder to keep him occupied and healthy. Just keep asking for as much support from the child life specialists as possible! Bring on the clowns, the dogs and anyone else!

As always, I'm not far away, and would be happy to help any way I can.


laura.h said...

Praying for Noah...and for you and Brad. Don't let them push you around. Just because they're doctors doesn't mean they know everything!!

nicole said...

Praying for you, and the doctors...that they will be able to make the decisions God wants them to make!
Praying for peace for you all.

Maroo said...

Hey! I just wanted u to know I am praying for u guys! I hope u guys get lots of answers and are able to start the ethanol locks back up!

Jules and Danny said...

Glad to hear that most things are going well. I hope you are able to work out the ethanol lock issue. Are they refusing to do it completely or just not letting you do it? I had a similar issue at a hospital across the street last fall. I very VERY adamant with the nurses... in a kind way. Eventually they listened to me.

I pray that you are in the right spot... I have had so many friends with such wonderful support and care at Sick Kids!

Thanks for letting us know how it is going.