TPN has not been restarted, unsure when it will be trialed again. Eli has a super amazing nurse today, a nurse we have again had for a large part of Eli's life.
We are all struggling right now. We are losing Eli piece by piece. I've said it before and I say it again. His doctors are agreeing and nobody knows how to make it stop. Each time eli gets sick he never fully recovers. We never completely get our boy back. this terrifies me each time. I never quite know where we will end. our baseline always moves. i wonder each time which piece we will lose. and knowing in general that we are losing hearing and possibly eyes. UGGGH.
i'm going to start crying again which means here soon i'm going to end up dehyrated from tears. so i will close with the below.
Tiny man cuddling with Bob this morning. This is right after they gave him his toradol. Between cuddling and toradol he's much calmer and sleeping now.
i also have to share this. A fellow tubie friend shared this on my facebook page. Our tubie community has gotten to be so close knit. All of the babies are so dear to each of us. This particular friend that posted, has a little guy who has Mito. Her little guy is not doing well, and they are preparing for his passing. This is something unimaginable to me, and so painful to even think about. My heart goes out to her. We have talked together many times and i just bawled watching and listening to this video. I cried for her little guy, I cried for my little guy, I cried for all our tubie kiddos, and I cried for all of us as parents who are just making it minute by minute. So I have to share this video here as well.