Phoebe had a good night with her Grammy last night. She has had a hard time getting comfortable in her bed with her sores and her tummy bloating so they increased her morphine drip last night and she slept peacefully. The morphine makes her face really itch so she receives Benadryl to help with that as well. She is being seen by the wound care people in the hospital and has a regimen we follow to keep her bottom protected until those sores heal up.
Sodium is still all over the place with a high of 166 today. I have a hard time not getting all bent out of shape when I get the sodium reports. Nathan reminded me today that there’s nothing I can do about her sodium and that she has a whole endocrine team consulting about her situation around the clock. I do know this, but it’s hard for me not to react to the news each time that number climbs. Her high sodium keeps her tummy bloated and tight and makes her feel miserable. If high enough it could cause a stroke. I constantly have to give these things to God because I have several months of this ahead and can not live in this constant state of hyper-concern. Peace Lord..
The endocrine team is always commenting how tough a case Phoebe is to regulate because she is so sensitive to any change in her intake, ie: if she drinks an apple-juice box it can totally change their game. Most DI patients are not so prone to sodium swings with such a small intake, so Phoebe really throws a wrench in their DDAVP scheduling and dosage. So, they are constantly tweaking and changing things, IV fluids and the timing of her shots and the specific dosage. Grrrrr.
In spite of all this, Phoebe is managing to feel well enough to sit up quite a bit and play with her stacking blocks and put stickers in her sticker book. She also enjoys coloring or throwing her blocks into the bucket, catching bubbles and being read to. I got to see her do all of the above this afternoon and that was nice. She was having a good time and smiling even though her eyes were a little silly from all the morphine. She asked for some clothes and I put her jammies on her which she appreciated.
Her appetite is growing and she had some chicken and green beans and peas today, but we could not get her to drink. She NEEDS to drink and I’m not sure why she stopped since last night, but please pray for her to feel thirsty, she needs to help lower her sodium levels by drinking fluids. She is also receiving nutrition through her ng tube and seems to be tolerating that well so far. We are also avoiding salty foods for her.
We have received so many lovely toys, cards, baked goodies etc. and I recognize many of your names from Caring Bridge even though I don’t know you in real life, and we just want to say thank you for your thoughtfulness. I can not believe the stories I hear about the people who are praying for our little Phoebelicious from all over the world!
And thank you to those of you who have given financially towards Phoebe’s care and are helping us to be able to live here in Dallas near the hospital while she receives chemo. This is a huge blessing for us, and especially our boys so we don’t have to split up our family and commute. Phoebe has been in the hospital for forty days, since Jan 1st. It’s hard to believe she hasn’t been outside in forty days.
Tonight Nathan and I are BOTH home with the boys while Nathan’s parents are with Phoebe. We are enjoying an almost normal night with homemade cookies and America’s Funniest Home Videos. It feels good to laugh with the boys and unwind. Tomorrow I will be back at the hospital with the Phoebster and she will have her outpatient chemo IV drip in the evening.
Thank you all for traveling with us down this grace-filled, sometimes raw and too-real, road. Thank you for leaving your encouragement in Phoebe’s guest book. We read it daily, often cry, sometimes laugh or marvel at who is following Phoebe’s journey…
all our gratitude, ~Amey