So I've been sitting here trying to figure out how I want to go about this post. For the last 8 days I haven't had the time or energy to post an update. Our daily schedule can be a bit hectic. When Reagan was discharged we were THRILLED. Our family felt whole again. We celebrated Addison's 2nd Birthday, and had a blast. It felt good to share a positive day with our family after all that has happened. As some of you probably have figured out already that Reagan's life things can change very very fast from good to bad, and bad to better, and better to horrible.
Her daily routine looks like the folowing:
6am-7am FEED through Ng tube
8am Meds
9am-10am FEED through Ng tube
12pm-1pm FEED through Ng tube
3pm-2pm FEED through Ng tube
6pm-7pm FEED through Ng tube
8pm Meds
9pm-10pm FEED through Ng tube
12am-1am FEED through Ng tube
*Reagan can't go on her CPAP machine for 30min after the end of her feed, so my night ends at 130 am at the earliest. Sometimes she doesn't tolerate her CPAP machine well and I give up trying at around 3am cause I am so deliriously tired.
In addition to her feeding schedule she also has lots of visitors who assist in her care. She has a Visiting nurse come 1-2 times a week. She has Early Intervention following her and a nurse comes out once a week, and her physical therapist comes out once a week. She also has a respiratory therapist come to check in on her CPAP machine and other equipment. She has appointments with her primary care doctor, GI doctor, nutritionist, ENT doctors, and neurologist.
When Reagan came home last week she came home with a lot of equipment, so I quickly set out to reorganize my house and make it feel more like a home instead of a hospital. Reagan has oxygen, a CPAP machine, oxygen monitor, and iv pole with a tube feeding pump on it. The set up looked daunting to an adult let alone Addison and any other children that stepped into our house. It took a few days but I came up with a few creative solutions for the kids.
In the meantime Reagan overall was so much better...UNTIL the doctors decided they wanted us to try and feed her puréed foods. Two bites in she choked and turned blue. She recovered pretty quick, but her breathing was really labored after that. Since then she hasn't tolerated her tube feeds as well. She would arch her back, reflux, gulp formula back down, and cough. Then yesterday she threw up and started to turn pale around the lips and I knew something wasn't right. She also had physical therapy and the therapist pretty much just held her because she wasn't tolerating anything. She was working so hard to breathe at times it exhausted her. She fell asleep before her therapy session was over and slept for hours after.
The visiting nurse came and said she sounded so much worse than last week. She was getting pale around the lips at times, retracting in her neck and ribs, and using all the muscles in her belly to help her breathe. Over all she was struggling to breathe. The nurse called down to Boston to talk to the GI doctor and they said she needed to go to the children's ER. But first they said she needed to go to the closest ER and be transferred to children's. They were afraid she could aspirate on the drive down to Boston. So at 2:30pm we arrived at LGH. We left via ambulance at 5:30pm to Children's. We arrived at 7pm and spent the next 4 hours in the ER before they transferred her up to the floor. They have started her on IV antibiotics because she has pneumonia, most likely from aspirating her vomit yesterday. Until tomorrow she isn't allowed to eat at all, she needs to be reevaluated by the feeding team and see GI.
In this moment, I am sad, I am sad my baby is sick again. I am sad she is being poked and prodded. I am sad she has to be in the hospital instead of being at home with her family. I am sad Addison and Anthony aren't with us. I am sad for the life she is missing out on. I am just sad and tired of all this back and forth. She made it 8 days at home this time. Hopefully there isn't a next time. Please pray and if you don't pray, please send positive thoughts to my family, we all need it.
I am gonna end this post with a bunch of pictures. All of them were taken in the past 8 days since Reagan's been home. They highlight the ups and downs. Here we go...
My girls are so happy to be back together. Our whole family is happy we are all back together once again.
Reagan most times struggles to do the things other babies her age can do. She cant be flat on her back for any lengthy period of time because she will reflux and hold her breath then have trouble breathing. She even struggles to sit up on her own unsupported.
Right now she is sleeping, and I have updated this blog the best I can. Gonna get some rest and post more tomorrow. Thanks in advance for love and prayers!
No comments:
Post a Comment