I have been finding it quite difficult to keep this blog updated lately. Noah is still in hospital...almost 4 weeks now. The team meeting didn't leave us with any great answers. The surgical options sound dismal (the risks are just too high for Noah right now). Our surgeon recommended taking a less aggressive approach, but no one really had any great solution. It was discouraging but it did make our decision regarding surgery easier.
Noah has been on TPN (total paranteral nutrition) for the past 2 1/2 weeks (he is being fed directly into his veins through a central line). It has done absolute wonders for Noah. He has put on an amazing amount of weight (8lbs 10oz) and his energy is unbelievable. He really is a different baby! Unfortunately, we can't do TPN much longer as his liver functions are rapidly climbing (a warning sign that we could end up damaging his liver). So it seems that we are back to where we started. We decided to give jejunum feeding one more try, so yesterday the gj tube was reinserted, along with another tube to try to keep the bile drained off his stomach. The hope is that Noah will have nothing in his stomach to reflux. If this doesn't work, we will probabl have to go back to g-tube feeding and just take Noah home. This will mean taking our chances with aspirations, which is certainly not a great situation, but it may be the only option we have left.
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6 comments:
Nichole,
Thanks sooo much for updating. I'm praying for Noah. I've sent him another get well card ;-). I know you're tired, but I want you to know that I'm praying for you too. I sure hope you're finding time to rest. Everything is going to work out. Please give Noah a kiss for me!
God bless and take care of yourself!
~Rissa
Nichole,
I've been praying for you all week. You must be so tired and sick of being at that hospital. We love you very much and will continue to pray for Noah that the tube will stay in, he won't aspirate and he will continue to put on weight.
Love,
Laura
Nichole, Tristan askes every day if we will see Noah again today and says he can hardly wait to go back. He also sings about him and tells us he will build an ark one day. We doubt it's an ark that this Noah will build, but he certainly has a special reason for being here. I continue to pray for him and the rest of your family (and you).
love Ramona
Oh Noah...please get better. I have never met you, yet you have touched my life in such a way...I can't even explain it. You and your family give me hope,and it somehow makes me stronger - your truly are a gift from God, you HAVE SAVED MY LIFE. I think of you often, and though I don't pray...I take time to 'pray' in my own way for you. Be strong little guy, be strong. I wish you and your family the best.
- Me
Nichole,
I get your updates from Kerri Kincaid. I met her and Erin in Sweden. Please know that you are being prayed for all the way in Oregon. May you find rest in our God. He loves you so very much.
Hi,
Just wanted you all to know that my family and I are thinking about you guys. Please hang in there. Nichole, you all have been on my mind so heavy today. Hope all is well! I'm sendng up prayers and sending nothing but big hugs your way!
Take care...love you guys!
~Riss and Family
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