Wednesday, November 18, 2009

NovaLung & other firsts

So to start with Natalia was placed on a device called NovaLung this evening to reduce the CO2 that her lungs cannot get rid of. It is amazing technology that we are so glad is here and hopefully it will bridge the gap until the donor is found or until we proceed with the living donor option. All of us in the immediately family are B+, which is really good in this type of situation, me, my mom Hanna, my dad Chris, my mom's aunt Maria and baby Sophie (i think baby sophie is a little too young to donate a lobe :) We have started the assessment process at the Toronto General Hospital since it might be a great option if a deceased donor is not found very soon.

So apart from that, Sophie today had a very nice night of sleeping (we were much better as parents) and she was amazing all day today. Feeding is going really well and we had our first paedtric appointment and met our doctor. It went great and Sophie is fine. We also got some great new tips that are slightly different than we learned tought at the hospital, but overall all is well. She is gaining weight and we didn't feel quite as useless today as we did yesterday. Anyway, another busy day of ups and downs, but nothing new to this family and like always we will get through.

Can't wait to get the call.

Natalia on the list for 3 months and 12 days
Sophie is 6 days old.

John

7 comments:

Cyn said...

I can not even believe that the Novaring exists or that a living donor is an option! I am just blown away. I'm still hopeful that a donor will come through any day and Natalia will still be strong enough and ready for her new lungs.

Yay for a good nights sleep. Some days are harder than others, but you're always thankful to have them!

Poppy said...

I'm hoping Natalia handled the transition to the NovaLung well and that it will help her get through to her transplant.

I'm simply amazed by the thought of a living donor in regards to lungs. I knew that it was possible with kidneys, livers, bone marrow but not lungs. How does donating a lobe impact your quality of life? Will the living donor be able to live life as they had before donating? I know the liver regenerates and that people can live with one kidney but am unclear about the lungs. I guess this means I have a date with Dr. Google!

So glad Miss Sophie is gaining weight and allowed her parents a good nights rest. You and your wife will be old pros at caring for Sophie in no time.

Sarah @ When two becomes three... said...

Thanks for your update on Nat John. I am so relieved that the Novalung is helping with the CO2.

It sounds like Sophie is teaching you guys all about her and that home life is awesome. She is going to grow and change so quickly. Enjoy every second of her newness.

Anonymous said...

Thought I'd pop over and see your blog and how Sophie is doing...she looks so sweet, congratulations, I'm glad your enjoying her.

It's amazing how much medical advancements we have done, from ventilators to now living donors, wow that is just amazing, yet wonderful that you at least have that option.

Thanks for continuing to update, I'm glad she was able to get the Novalung, at least she can talk a little and be much more comfortable. Still praying for all of you that the Nova Lung is simply very temporary and new lungs are on their way.

Amanda
(Sharing a Dream Accomplished/My Life my World)

Sarah @ When two becomes three... said...

Hi John:

Nat is so strong - I am so glad to hear that she is breathing with her new lings. Complications are so scary but Nat is a fighter. Try to get some rest.

The donor has given Nat the ultimate gift. They signed their card and wanted to be able to do this to allow someone to live on.

Sending hugs and love.

Poppy said...

Just wanted to pop over here and tell that I'm thinking of you all. I'm so happy to hear that Natalia got her lungs and is breathing with them. God is good.

Ramona said...

John,

I can't stop thinking about Nat and all of you.
Sending her so much love.
We are praying for all of you and for her full recovery.

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