Tuesday, June 09, 2009

Toronto Day 8

In the words of our surgeon "and the plot thickens"...

Based on the results of yesterday's barium study, surgery on Friday will be a bit different than originally planned. The ear tubes will still go in, an upper and lower GI scope will be done and biopsies taken. But Noah's stoma cannot be closed right now as planned. Noah's barium showed that he has a blockage of some sort between his stomach and his duodenum. No barium from Noah's stomach ever made it out of the stomach during the test. Our surgeon isn't quite sure what is going on there. The Coles notes version is that he's thinking perhaps a combination of previous surgeries and this latest prolapse has closed off his pyloris. This could explain his increasing retchiness and his inability to tolerate much time off his NG suction. But since there is no way to know what exactly is happening or what will be required to fix it, the surgery on Friday will be exploratory. Our surgeon will figure out the lay of the land in there, leave the stoma open so as not to obstruct Noah's stomach completely, then wait for biopsy results to decide the best course of action. The barium also showed that Noah's large intestines are mostly on his left side. They take some strange turns...so his anatomy is a bit different, but it shouldn't be affecting his ability to tolerate feeds.

This was all explained in great detail to me today, with elaborate diagrams. Each day Dr Wales has come to see us, sat down with us and spent a great deal of time talking and answering questions about everything that is going on. Have I mentioned how very impressed I am with him and his team? How nice it is to feel that our concerns are validated and our thoughts are important? To feel like they are looking out for our whole family, not just Noah? It is really a welcome change. So, yes, we are glad that we have come and feel confident that if there are answers to be found, they will find them.

Not much happened today. The second tube they put in Noah's jejunum yesterday came out overnight, (no surprise there, as nothing was holding it in), so there are some tests they are unable to do right now. ENT, Genetics, Metabolics and Anesthesia have all been consulted. However, we didn't see any of them today, so hopefully tomorrow we will meet some of them.

Mostly we are in a holding pattern...putting in time...waiting for Friday. Noah has been busy cleaning all the hallway floors with his little toushe (no, you don't want to know how dirty these hospital floors really are!), and showing off his cuteness to everyone. He is already developing a special relationship with the housekeeper who brings in her mop for his daily entertainment (he's always had a thing for them). While I am bored silly, Noah is perfectly content here...basking in the constant attention.

11 comments:

Ramona said...

You must be getting tired. And Noah too. That sounds like a lot of info to digest and to see what all they will learn and do.
Ramona

nicole said...

Praying for the surgery on Friday! Praying you have peace between now and then.

Kathy's corner said...

Hopefully they will learn some new things on Friday. Praying that you will beable to rest well at night. Hugs to both of you. love mom

Anonymous said...

so glad your experience with the surgeon has been so positive, (and the housekeeper too:) Praying for you every day
Erica

Kim said...

I'm thankful that you are being listened too...I sense your relief!Praying that the surgery on Friday will give the surgeon(and you) some answers and provide a more concrete plan for Noah's care. We miss you like crazy...wish I could just hop a plane to visit. Hugs to you and my Bean...

Maroo said...

I bet Noah is just charming everyone!! I bet u r very tired. I am glad u r getting good feedback, though! We r still praying daily for u guys! Hang in there!

Alison said...

Continuing to pray that you receive answers and that the care continues to go well.

Anonymous said...

Nichole,
I'm glad to hear you are having a positive experience with the doctors and staff and that good things are coming from this time. Praying that the Lord will encourage you in lots of little ways and that you will feel his presence with you.

Heather

Christie Tuttosi said...

Glad to hear that Noah is being treated holistically...mind, body, spirit and family...the way it should be done. Praying for you all.

Jules and Danny said...

I can't imagine how you have adjusted to living so frequently in a hospital (and a new hospital this time)... there is so much information to constantly take in and not being with your whole family... you must be an incredibly strong woman!

I am glad to hear that the team is working to find answers and ways to improve Noah's world.

If you would like company to ward off the boredom, just let me know. I don't want to be pushy, but I'd happily come in on an evening or weekend to help pass some time...
Jules

Amber Greenawalt said...

I don't even "know" you Nichole but I love reading about your family. I am picturing Noah scooting around the hospital floors on his butt---it really made me smile. And I needed that. Thank you you for sharing Noah and your family with us.