The instuctor nurses have been calling and coming by today and you know what that means? We are being prepped to go home for the weekend! It is still undecided, but we are headed in the right direction with good, level sodiums, successful oxygen weaning and a little Miss who keeps asking for milk and to get out of bed. She hasn’t passed her swallow exam quite yet although she IS swallowing sips of water and small bites of applesauce for her speech therapist. I’m not sure what qualifies as a “pass”, but in my opinion she’s doing great! I will be glad when I can fulfill her request for milk!
While Phoebe was in ICU it was discovered that she had a large cavity in one of her teeth. Apparently chemo does a number on the teeth alongside everything else it does, and dental issues are not uncommon. None of my boys have ever had a cavity, so it was a little sad she should have such a large one at such a young age. On Thursday she will go to the OR for sedation and removal of the tooth. This procedure could be a set-back for going home if she has difficulty with sedation or the procedure itself. Also, her fluids will have to be turned off the night before and any time Phoebe’s fluids are altered, her sodium tends to swing out of healthy range.
Please pray for everything to go well with the procedure and that the endocrine team will handle her fluid situation with wisdom so that she will stay on track with her stable sodium levels.
The tentative start date for the next round of chemo is next week sometime. Phoebe’s healing mouth will play in to that equation, but otherwise she is doing well enough to begin her next round. I feel a heaviness even thinking about starting this all over again. She is finally coming back to us and manifesting her sweet, silly self and we have to knock her back down. This is the heartbreaker with chemo. If we had the luxury of waiting longer, we would, but AT/RT is sneaky and fast and not something to be trifled with. All of Phoebe’s residual issues from her bout with sepsis are reversible, the loss of muscle tone, the swallow reflex, the fatigue…the only thing in Phoebe’s body right now that can’t wait to be dealt with is the cancer, so here we go again.
And I’m happy to be here. Because to be here means I’m not the Mom I saw weeping the other day on the patio, clenched fists wringing out the grief of saying goodbye to her 7 month old that fell head first out of the grocery cart. And I’m not the mother who has just taken her child home on hospice care. To be here means that I’m not keeping vigil at the bedside of my septic daughter waiting to see how things will shift. To be here means that we get the opportunity to fight again. Living in the ICU for 3 weeks lends a certain amount of perspective to our situation, and turns any self pity I might harbor into gratitude that we are where we are today.
Getting to take Phoebe home for a few days and have everyone under the same roof at home would be amazing and a great morale booster for all of us. I keep imagining her face as we stroll her out into the sunshine for the first time in three months and it brings tears to my eyes every time. I pray that is a sight I get to behold very soon!