Wednesday, June 24, 2009

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.

16 comments:

Maroo said...

Nichole- we are praying for you guys everyday and will pray special prayers for you guys tonight and tomorrow! Hang in there!

Anonymous said...

Nichole,
Sounds like you had a rough day. I'm praying for you to be at peace and sleep well tonite. And for tomorrow, we will certainly be praying throughout the day - that the Lord will have his hand of protection on Noah during this long surgery, that He will guide the hands of the doctors, and that you will feel great comfort and peace as you wait. Thanks for your faithful updates, Nichole. Many people are praying.
Heather

nicole said...

Praying here too Nichole.

Kim said...

Nichole
May the Lord hold Noah in His strong arms of protection and peace. May you feel that peace as well. Remember the picture you had of angels in surgery with Noah back in December...remember that for tomorrow. Noah will not be alone. There are SO many prayers being lifted on Noah's behalf. Praying for Dr. Wales and his team. Sleep well my precious friend...I miss you terribly. Hugs to my Bean.

Jolene said...

Thank you so much for your updates Nichole. Our prayers are with you.

laura.h said...

Praying!

Anonymous said...

I awoke at 5:15 this morning, and began to pray. I will be praying throughout the day. Praying that you would experience the "PEACE" that passes understanding, as you wait alone, but then, you really aren't alone. Jesus waits with you, and is carrying both you and Noah through. We love you so much, and miss you, and yet are very thankful that you are where you are, and that Noah is getting such wonderful care. Love mom and dad

Lexi said...

I cannot imagine the emotions you and your family must have been and are still going through. You are such an inspiration to me. When I am having a bad or rough day and then I come and read your blog, it definitely puts thing into perspective for me. I think about you all often and pray for peace and guidance through all your decisions! Thank you for what your blog has brought to me life!

hilda said...

Hi Nichole,You are so in our prayers. May you sense God's presence today in a powerful way as you sit and wait for the surgery to be done. God is faithful. Don't give up. He will see you, Noah and your family through these deep waters. Love Auntie Hilda

Anonymous said...

Nichole,
Praying for you and Brad today. May God give you courage and the doctors much wisdom.
Sandie

Pete and Brenda said...

Praying like crazy for you all today...

Kathy said...

Praying this morning...for you as you wait, for Noah, for the team in the OR.

Linda (khalana) said...

Praying for you all!!!!!

Grandma daisy said...

Nichole, your journey is posted on on prayer chain and we are asking God for His Peace as you "sit" in a Toronto hospital away from the family.

Anonymous said...

we have been praying yesterday and today for you, Noah and the doctors. May you feel those angels watching over you all
Erica

Amber said...

praying for you, your family back home and your little guy!