Wednesday, November 17 - Day +35

As we left the hospital Saturday, the nurses lined the hallway and showered Collin with confetti. I was holding it together pretty well until then, but suddenly it hit me-we were really going home! Honestly in April, as our world fell apart, and many times along the way, it didn't feel like we'd ever make it to this point. I was overjoyed to be taking Collin home. He was pretty excited too; when I put his shoes on and put him in his stroller, he started shaking with excitement. As we walked down the hall, he was waving goodbye to everyone, and shook with excitement as he pointed to the elevator. It was a joyful sight!

We've been home for five days now. Getting home, unpacking and putting things away, getting organized, getting into a routine, meeting Collin's care needs, and trying to take care of normal household chores has been challenging. I am so thankful that my Mom was here to help; I don't know how we would have survived without her! As much as I wish we could go back to the way things used to be now that we're home, it isn't possible. It's a new "normal" for us now.

Here is an idea of our routine since coming home:

6:00 am-wake up, get myself ready for the day
7:00 am-disconnect the TPN (IV nutrition) from Collin and flush both lumens of the Broviac
-get Collin dressed and ready for the day
-wake Neya and get her dressed and ready for the day
8:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
-breakfast for Neya
-pack lunch for Neya
8:30 am-Neya to bus stop
8:45 am-prepare and give Collin his morning meds, and disconnect feeding pump (oral nutrition)
-breakfast; try to get Collin to eat something
-clean up from breakfast
10:00 am-put antibiotic ointment in Collin's right eye for the corneal abrasion
12:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-lunch; try to get Collin to eat something
12:45 pm-prepare and give Collin his afternoon meds
1:00 pm-take TPN and vitamin vials out of the fridge to come room temperature 4-6 hours before use
2:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
4:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-help Neya with homework
4:45 pm-prepare and give Collin his early evening meds
-get feeding pump ready for the night, connect and start 16 hours of tube feeds
5:00 pm-get TPN ready for 12 hour infusion
6:00-put antibiotic ointment in Collin's right eye for the corneal abrasion
-dinner; try to get Collin to eat something
7:00 pm- connect IV pump and start 12 hour TPN infusion
-sponge bath for Collin
-shower for Neya
-shower for me
8:00 pm-put antibiotic ointment in Collin's right eye for the corneal abrasion
-prepare and give Collin evening meds
-kids to bed

Between my mom and Bill, they have been taking care of most of Neya's needs, straightening up the house, doing laundry, and preparing meals. At any time throughout the day, I also have to clean up multiple episodes of vomit and/or diarrhea, keep a toddler occupied and happy or get him to take a nap, handle temper tantrums, and fit in therapy, ophthalmology, clinic, and/or home nurse appointments. My mom and I were joking (sort of) that we need a house keeper like Alice from the Brady Bunch for a short time. Things will get easier as we don't have to use TPN anymore, or do the eye ointment, or clean up vomit/diarrhea, etc. By the time I get into bed at night, I can't keep my eyes open for long; and even once I fall asleep, it doesn't last all night because Collin usually wakes up at least once or twice. And as frustrating and overwhelming as things can get, I know that if I were one of the moms who doesn't get to bring their child home, I'd give anything to have all of this chaos to deal with, so I'll keep it and do the best I can. But please bear with me if it takes me a while to return a phone call, answer an email, update the blog, etc. Thanks!!!