Phoebe came home today after her final round of induction phase chemo which makes our Fair home hospital complete.
The new schedule began shortly after Phoebe arrived home when it became time for the bedtime routine. I have to share this here, because it will give you a glimpse of how our bedtime routine has changed in the last few months.
Phoebe’s bed has to be outfitted with a Chux pad and cover blanket in case we have a night time accident. Her nebulizer mask has to be changed out and 6 some-odd pillows must be arranged just so.
After I got Phoebe’s bed set up tonight, I gave Deacon his Loritab knowing that in half an hour it would be time for his uncomfortable washing and wound-dressing change. Nathan got Deacon in the tub for his “half-bath” and then placed him on a towel on the bathroom counter so I could wash his hair, gently clean his neck and face burns and apply his ointment. After this, I took off his bandages and cleaned the burns on his abdomen that are exposed. Deacon does not appreciate all this attention, but the Loritab is a huge help in making him more agreeable.
Three rolls of bandages and a couple of guaze pads later, Deacon looks like an old timey football player. The Mepoplex foam stuck to his chest makes him look muscle-bound, which is really pretty cute. Whenever he is feeling self conscious about his burns we remark about how awesome it is that he looks like a football player. He eats it up.
While I am mummifying Deacon, Nathan is doing Phoebe’s nebulizer treatment, and hooking her up to her bi-pap machine. When everyone is taken care of, my bed is outfitted with a special pillow and a cover blanket for Deacon so he won’t ooze on the bed linens. Tonight I will have Deacon shift (which doesn’t entail much once he’s asleep) and Nathan will be on the cot in Phoebe’s room. Once Phoebe is in a good, deep sleep, we will put her physical therapy boots on her for the night. (By the way, thank you ERIN for coming up to the hospital on your day off just to make sure Phoebe went home with the right angle of boots!)
At midnight, Benjamin and Phoebe need meds. Benjamin is taking an antibiotic for his skin infection and it seems to be getting better. Unfortunately, the medicine he is on requires that he sit up straight for 10 minutes right after he takes it, so we have to wake him up at midnight, have him take the pill, then sit with him for ten minutes to make sure he sits up straight. I have no idea why that is required, but that’s what it says on the label!
At some point after midnight we are finally allowed to go to sleep with our respective patients for the night. *Yawn…and then I set my alarm for 6 am when Phoebe will need her next shot. Crazy bedtime routine. Crazy life.
We are thankful to have our little patients at home but we need grace for this lot. I had a mini-breakdown today just feeling overwhelmed and pulled so many directions at once. Thank you to all of you who are praying for us, supporting us, loving us and just being there for our family. It means the world…
Here’s to a week with new mercies every morning,