Dr. Bowers told us today to “hold down the fort” until Friday-ish when Phoebe’s immune system is expected to start the upswing.
“Hold down the fort” is the perfect sentiment here because it feels like we are hunkered down, dealing with whatever attack comes next and holding our breath waiting for some relief for our sweet girl. Her heart rate has camped out in the 180″s today and should be in the 110-120″s range. Her breathing is very shallow and fast, possibly a combination of tummy pain and her compromised lung.
Her sodium is 156 which is much too high still. They are having a very difficult time bringing it down and are not sure why, which is disconcerting. We are told quite often that Phoebe obviously did not “read the textbook” when it comes to how Diabetes Insipidus works. She is all over the place with her sodium numbers and it is confounding the medical staff here. Is it not enough that she is one of only 40 children diagnosed with AT/RT cancer in U.S. each year? Now she has to do DI her own way. I think my gray hairs have doubled in the last 38 days.
Her oxygen is better today, and she is tolerating the TINY little bit of formula they are giving her through the ng tube. The plan is to up the cc’s slowly and see if she can tolerate the food. In the meantime she is still receiving IV nutrition as well as lipids.
So, we are hanging in, doing life with chemo. The last several days have been a crash course in what the next several weeks will be like and it is an intense pace. I know many other families have walked this road before us and come out on the other side, and those stories keep me going. I do find however, that I can not read AT/RT blogs of the children who did not survive. I start to hyper-analyze Phoebe’s situation and get fearful and neurotic. It’s not a good place for me to go.
I just have to live in this moment. Enjoy her in this moment, blow bubbles with her, watch Veggie Tales and make her days as fun as they can possibly be while she feels so bad. So, that’s what we’re doing.
I never know how much medical stuff to share on here. I know it’s easy to get bogged down in the medical details, but it helps me keep track of things and it’s good for me to just write it all out.
Thanks you all for praying, your sweet gifts and thoughts and words are a treasure to us.
PS. Averic is still struggling, but I think we’ve been given some direction from the Lord in how to help him, so thank you all for praying for him especially. We feel like we have a better understanding of what’s going on with him.