All of our kiddos at ChristmasI have been meaning to write here, my little corner of the web, and update all of you on peanut but I keep putting it off for a few reasons. We have been told that baby Nicolas needs a trach and will most likely be on a vent for some time afterwards. No one knows how long, only that without it he will not thrive and will likely not survive. But to bring him home from the hospital we would have to live in an area that could support a home "vent" system, our area is not able to provide the service. We also know that Nicolas will need a team of specialists to deal with his other medical needs if, God willing, he makes it to that point. I am still not ready to talk about what happened, to my heart, as I had to decide to move and save my son, even though it meant I would have to leave another son behind with his dad. I wrote this out a few times and went into way too many details and I didn't want my son to read it(now or ever) and feel bad. I will just say that he was all ready to move with us and at the last minute he was "talked into" not moving. He had already felt so torn and then this was done to him. I don't want him to feel bad or be sad or feel he has to make anyone "happy"... that isn't his burden to bear... so I decided that in faith I would move, and pray that one day my other son will decide to change his mind and join our family here. I didn't know how I could stay and let my baby die, and I still don't know how I pulled out of town without one of my babies!
Allie and Nicolas
Tim and NicolasOK I cant write about that anymore... please just pray for all of us. P is doing ok, he saw two doctors today... a pulmonologist and an ENT... the pulmonologist said that he thought Nicolas was ready for a trach based on the history he read from seattle, the ENT said maybe not, maybe he won't need it. I am pretty sure, unfortunately, that he will need it but think that a reevaluation of the whole situation won't be a bad thing. I will know more in a few days and will update the blog again.. I just had to get past this post....
My four boys....
Jenna, we had a similar situation with fletcher. we fought a trach for about 6 months. and i'm going to tell you what one of my friends told me and i honestly didn't believe a word she said but found out later she was right. fletcher was home with us the first year of his life when he wasn't in the hospital. literally he lived in our home for 9 weeks total but not consistantly. Our home health nurse told me if fletcher had a trach he would thrive. i was all like, whatever, not doing it, out of sheer ignorance and fear, basically. fletcher had open heart surgery when he was 10 months old, we were honestly hoping that was his problem, a heart problem just so he wouldn't have to have a trach. that's how scared we were of a trach. after surgery they found that he couldn't breathe without mechanical ventilation so we had to have a trach and longterm ventilation. as you know fletcher is now 5 years old, still with a trach and still on vent support. we're still praying he'll be able to breathe on his own and get rid of that trach. it was the best decision we ever made and it hasn't been a horrible experience. i guess what i want you to know is that fear isn't from the Lord. i'll continue to pray with you asking the Lord to guide you in your decisions for they are tough and a burden all in themselves. please keep me posted and remember Joshua 1:9...He's with you wherever you go...
ReplyDeleteDenise, Thanks for writing.. I do need to remember that about fear! Thank you for praying and know that we pray for Fletcher and your family as well.
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