The NG tube lasted a little more than 24 hours when Rylie threw up and the nasty tube came flying out. This all happened around 7:30 last night, so we hooked her up to her TPN (IV nutrition) like always and made our way to the clinic this morning for a replacement. Funny though, we heard our friend Gracie (a one-year-old BMT girl who also has Hurler) did the same thing. Gracie is only one day behind Rylie in her treatment. They seem to come up the same ideas together and so we were both back at the clinic today for their second NG tubes. Anyhow, we're back at the feedings. The hope is that Rylie's stomach will grow a little because it has food in it from the NG tube feedings. When we don't feed her as much after her stomach has grown a bit, she should learn to be hungry again. So far we're only feeding her about 30 ML per hour, but we'll work up to feeding her actual "meals" tomorrow. It's hard to get used to this, but I know it will be a matter of time that this too becomes a part of our normal day. Of course we hope it won't be for long.
Also, I forgot to update about the CT scan of Rylie's lungs. Everything did come back normal, and it actually showed a better result than the last scan. This is a wonderful answer to prayer.
Tomorrow we report for Rylie's procedures at 5:30 am. At least Rylie's fasting won't be a problem. Please pray for easy intubation and procedures and no problems with the anesthesia. Thank you for checking in on Rylie and continuing to pray for her.
Only four more days until we're back in Arvada!
7 comments:
We can't wait to see you! Please let all go well tomorrow, and get yourselves back here to your own cozy beds.
:)
love and hope,sarah
I hope the procedures goes well today Jade! I am so fascinated on the strength of your little one! She is truly a child of God! Can't wait until your next post.
~Erin
I hope you have a chance to stop by the unit this weekend before you take off for Colorado!
Good update! We still check and pray every morning. Love Gary and Deb
Rylie Girl,
You are doing GREAT!!!
The food through the tube is going to be soooo YUMMY in YOUR TUMMY!!
Loved meeting you and praying WITH YOU. You laid your hand on your mommy as we prayed for her on July 26th and God's Presence was so strong and BEAUTIFUL!!
Praise the Lord!!!!your lungs are getting better and better!
Love to you, Rylie!
Give a hug to mommy and daddy for me!!
Praying without ceasing for you!
Jan Sinkevich
Well maybe Rylie will do better with the 2nd tube than Gracie. She threw it up this morning. *sigh*
Thinking of you guys while you go through your procedures and preparations to go home.
We will really miss you.
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