When her cardiologist walked in, his first words were "She's at an all-time high". 
Yes, the feeding tube is working like it should - getting some food into her and allowing her (and her heart) to rest. I have no doubts that this was the best thing for Eliana. I hope and pray that there are no negative consequences of the tube for her, but can definitely see the benefits of it. Her heart is also doing well. He feels we may be looking at late March or possibly early April for surgery now - unless of course things take a turn for the worst. He wants us to have another weight check this week on Thur and again in another week. We'll be back to see him in 2 weeks. All good news!
We've been dealing with her feeding pump malfunctioning - and trying all sorts of things to fix it. I've pulled out the manual and read on fixing all of the problems. I finally talked with someone at the medical supply company and he suggested it might be the powdered formula settling in the tubing. I did a rinse of the tubing and he was right. This caused me to be concerned about Eliana's tubing and I mentioned this to her cardiologist. He checked out her tube and said it was fine. Whew! (Though if it had to be replaced then I was in a good spot to have it done!)
I keep hearing that it isn't if the tube gets pulled out, it's when. Sigh. I am really hoping to avoid that. I know that I can do it, I just don't want to do it again. I'm not a medical or even a very scientific kind of person. I've learned more about anatomy and medical equipment than I ever wanted to know. You know you'll do anything for your children though!
I even asked my oldest if he would help me if her tube came out - just to hold her head still. He shook his head "no". I emphasized that it would just be holding her still. He again said "no". Then told me that he wasn't comfortable with that. I told him that I wasn't comfortable doing it either! He reminded me that I was the parent and didn't have a choice. True. Guess I'll need to call a friend for help if/when I have to do that. Lucky for me to have a best friend right next door that wouldn't mind helping at all.
Thank you to so many of you that have reached out to encourage me and my family in so many ways. I'm truly touched by your words and know that God is using them to help me. I am blessed in many ways.
With love,
Posts
Yes HE does, Leslie! Eliana is the right name with the right meaning. I prayed for a BIG blessing for you that would strengthen your faith and fill you with rejoicing! It was exciting to me to hear that your card said maybe early April... when RSV season will be over! And when she amazes everyone and grows so strong that she is taking most of her milk by bottle, and it isn't wearing her out, then he may postpone surgery for a few more months!
ReplyDeleteI saw in one of your earlier posts that you made reference to a story that I'm familiar with... you must have the same book I have: "Angel Behind the Rocking Chair" ... I *love* that book!!
If you have to insert Eliana's NG tube, it helps the tube go down easier if the baby is sucking on a pacifier (or a bottle, I suppose) because it keeps their nasal passage and esophagus relaxed. Someone told me that moms tend to be gentler than nurses... there were times that I put Justin's tube in while someone held his head and kept a pacifier in and he did not even cry!
Yay, what good news! Thanks for updating! And thanks be to God for his loving care of Eliana through her doctors, nurses, parents, and siblings!
ReplyDeleteI hope and pray you can rest tonight and that tomorrow is a good day.