Saturday, March 19, 2011

Almost a month!!

This coming Wednesday will be a full month that Noah has been home with us! It is almost strange to say that it is almost like this last hospital stay was ages ago. It is great how quickly my mind has put it in the past and we can get on with our lives at home. While things have been great here at the home front, we have had quite a few scares and concerns. The other day, for instance, my sister and I were in the kitchen making dinner. I heard Noah cough like he had just thrown up, so I went out to the living room to check on him. He looked up at me with a huge grin on his face but something was different. He did NOT throw up but as I quickly looked him over I had noticed that his hands and feet were blue (like 'blue baby' blue). I started freaking out and ran to get his pulse ox but by the time I got it on him he was already starting to pink back up and his O2 saturation was in the high 90's. After cardiology had called back, they said it could be that his cough could have caused his blood to shunt across the VSD. They were happy that the blue episode did not last long and that he recovered from it on his own and that he did not drop his O2.
The other concern we have had this past week and a half was how much Noah had been vomiting and his weight. In a week's time, he had lost 2 whole pounds. In a toddler his size and condition, that is HUGE. He now has a GI appointment on Wednesday. But in the mean time, Noah's Special Needs coordinator and I came up with a feeding plan that we thought would help with his vomiting so that he can get the fluids and calories he needs. So... instead of having him on the feeding pump 24/7 at 39cc's an hour, we altered it to run for 22 hours a day at 42cc's and hour with his 2 hour break between 1am and 3am. So far, this has been the trick! Yes, I lose even more sleep over this but I am willing to do and try anything to keep my boy home and healthy with me! I am so glad that this new plan is working! Thank you Gwen for helping me!!!
Noah has developed a congested cough over the past couple weeks. The vest treatments are helping though. I have even tried deep suctioning him and that has helped a little too. Yesterday, I had Aaron help me with suctioning and my little nephew came in the room to watch. After the first pass, Jonas (he is 2 and 1/2 years old) looks at us with a very serious face and said while shaking his head, "I think that is enough, guys" LOL he is so cute! He loves his little cousin and is sometimes protective of him. Such a sweet heart. But his expression and the way he said it was so funny!
Aaron and I are in the waiting process for our apartment. Every once in a while, I start day dreaming about living in our own place. I picture Noah's room and how I want to arrange his furniture. I can't wait!

1 comments:

Cheryl Anderson said...

First of all, we have some Nestle Peptamen 1.5, close to a whole case, if by any chance that is what you use I could give it to you, I have no need for it. It doesn't expire until Oct. Why do I have it. I had surgery in Nov. and was sent home with tube feeding. I had it going for about 12 hrs. and I stopped it myself. I vomited it up. I am an adult of course, but I managed to start eating again and I could afford to lose some weight. If you can use the food I have call me at 262-930-9598.

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...
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He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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Me and my boy :)

Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!

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