I would like to be giving everyone a rundown of how we expect our last weeks in Chapel Hill to play out at this point; however, I really have no idea. As of Saturday morning, the infection in Ned's central line (which is like a deeper IV) was still there so this morning they removed that line. The infection wasn't growing out from his other blood cultures so it is likely that it was just in that line. He remains on antibiotics and we'll just have to see how this affects our surgery schedule which was set for Wednesday. In the back of my mind, I'm hoping we'll move forward on that date, but my more discerning common sense tells me to forget it. I should know more tomorrow.
Ned went to nuclear science for his gastric emptying test on both Thursday and Friday...both attempts were unsuccessful. I wasn't the least bit surprised. When they explained to me that they had to take him off any feeds for six hours, then take him down to a test where they would inject 20mL's of radioactive fluid into in stomach, I thought....there's no way. He can hardly tolerate 20mL's of breast milk on continuous feeds, I somehow knew pushing large volumes of radioactive dye in at one time would go over very well. Needless to say, he puked some of it up both days and they have scrapped that study altogether. As far as I know, they are still planning on performing a repeat upper GI study tomorrow to decide about whether or not he'll need the nissen procedure.
Other than there being no real end in sight, things are going well. Ned has been a bit tired lately, I think it's just from fighting off infection. He has been really sweet about laying up on my shoulder and even starting to tolerate some tummy time! I'll start working with him again tomorrow on that and feeding. I have talked to so many people this weekend who have been praying for Ned and it just continues to completely overwhelm me. Specifically children who pray and are interested in seeing me because they get a real sense of who they are praying for. For me, that is the most touching. My heart melts to see kids, from toddlers to teens who make a point to tell me how much they love praying for Ned...Wow! The encouragement couldn't have come at a better time when I was starting to look more toward home than toward God. I am reminded that His purposes are so much greater than mine. His works are for good and they are for the multitudes. I thought it would be such a blessing if Jack and Margaret learned some things about God and His ways through all of this, but, as usual, His plan has been exceedingly abundant.
I love you all!
Betsy, Travis, Jack & Ned
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2 comments:
So sorry that Ned has to go through all of these tests, adults don't do well with all of that much less little Ned. I'll be glad when they say it is time to take him home, and I know you guy's will be too. All of you are in our thoughts and prayers everyday. People at school (Cherryville Elementary) ask about him all of the time, and I tell them if they want a blessing to just read about him and the miracle that he is. If surgery is still on for this week, we will keep all of you in our prayers as we always do. Sincerely, With Love, The Alexander's Donald, Kim, Emily and Brock
We continue to pray for all of you and for little Ned. Poor little guy having to endure all of this. It's hard to watch, I know.
Read Psalm 121 to him. I believe God is guiding Ned through this journey, and just like I used to say with Cadenne, I just bet that he and God are having some amazing conversations that we won't ever know about. Somehow I believe that these little ones who endure so much "know God" (not in the sense of salvation or anything of course) in the deepest parts of themselves.
Oh if only Ned could tell us!
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