We gathered our courage (and our baby) and made our way back into the hospital for our first clinic visit as outpatients yesterday. The purpose was to check up on her, do her counts and generally make sure we weren’t bungling things too badly at home.
It was a good visit overall. Her blood pressure was the best we’ve seen since before she was initially sick with the bronchial mess about 1.5 months ago: 83/44. That’s normal for an infant, clearly Zoe is happy to be at home too. She spent a great deal of the weekend sleeping without being poked, suctioned, tested or stuck, and it paid off.
- WBC: 1.5
- RBC 2.93
- Hemo: 8.7
- Platelets: 381 (wow, this one had the doctor grinning ear to ear)
- BP: 83/44
- Temp: 98.4
Our outpatient visits will take place 2x a week, on Mondays and Thurs for now. We’ll be doing checkups on Monday, and on Thursday she gets her Etoposide dose over several hours along with a LP (spinal tap) for the next week or two.
We feel gratified so far that we pushed to get her out of the hospital when her BP stabilized. There’s just a feeling of diminishing returns after awhile in the hospital — a greater chance of reinfection and a loss of will and spirit in the face of the daily grind. A peaceful sleeping baby is an amazing sight after the past few weeks.
Boy what a job with the meds, confusing and scary. We kiow you are doing an excellent job. Really glad you are home and hopefully able to relax a little bit. The outpaitent vists are demanding but necessary and it’s only twice a week but that’s still a lot. We all hope that the outpatient visits will taper off at some point hopefully sooner rather than later. You are all in our prayers. Love John
I have been thinking of you all this weekend.I’m so glad you are home and that Zoe can sleep in her own bed.Thank you Evan for your daily updates, it’s good to be able to follow the progress and not have to worry about what’s going on. I also love the pictures you are sending. Love to you and Michelle! Hug the girls for me, they are beautiful. Great Grand Mom.
Wow, great numbers. Zoe, you go girl! Love, Mara
So glad you are all home!!!
Hope things are going well since you are at home. It sounds as if Zoe is being a real trooper and is so happy to be at home.
Thank you for continuing to keep us informed of her progress. I hope you and Michelle are getting some rest now that you can be at home.
I know Maya is excited to have you there.
Continue to pray for all of you!!