Sorry to be offline. I was right that it would be harder to be consistent at home. The first week home was rough. Within an hour of home arrival, we had the home health nurse here and all of our medical equipment which really just consists of a feeding pump, an oximeter, an IV pole, and then a couple bags of medical stuff like tubing and feeding bags for Vivian. The doctors had Vivian set up to receive 600mL of Pediasure in 10 hours overnight. That was too much, and Vivian would throw up if not just spit up about every morning. So, we had mounds of laundry plus the ever present pressure of "trying to get calories into her during the day." By Friday morning (July 22nd) we had something of a routine down and had expanded to 12 hours and slowed the rate from 60mL down to 50mL/hour. However, I completely freaked out when I checked on Vivian to find she had thrown up in her bed sometime between 6:30 and 9:30am and the tube and come up and out her mouth. Yes...now it was in the nose and out the mouth. Completely disgusting, and I had to deal with it! I called a nurse to come over IMMEDIATELY and help me. Long story short, she came, and we got Vivian bathed and fixed up. I put the tube back in with the nurse holding Vivian. No, it's not any fun, but I see why they trained us at the hospital now.
So....when Saturday morning came we fed Vivian some breakfast and had a repeat performance. We left the tube out during the day and replaced it that night. It took three tries and was very stressful. We did the same thing on Sunday night. Even though I was successful at getting the tube into Vivian, I dissolved into tears and dreaded Monday and the weeks ahead.
Fast forward to this last weekend. The tube stayed in place all week until Sunday night. At this point I've met with the cardiologist who is following Vivian closely. He gave me "the blessing" to leave the tube out and just keep working with Vivian on eating enough calories during the day. This last weekend Vivian's appetite has started to pick up, so that helps some.
We spend A LOT of time feeding Vivian because it's a tricky balancing act. We basically give her snacks about every two hours or so. She will eat 10 to 15 bites at the most sometimes, and everything needs to be pureed. The biggest goal is for her to continue to get sufficient calories for healing. We can't feed her too much or let her drink too much at once or she will throw up. She has an "angry gut" due to all the strong drugs she had while in the hospital. She struggles with some reflux due to all the Pediasure she is getting. In general she is not super coordinated in her swallowing capabilities which causes her to cough which can turn into a gag reflex and you know what comes next. Plus, she struggles with some textures of foods.
If we can get Vivian's gut to calm down and not cause her to throw up, I can so deal with everything else. Tonight I went to BBB and bought a Magic Bullet blender with the intention to puree whatever we are eating and give to Vivian. I've been limping along on babyfood, oatmeal and pudding so far, but she could use more nutrients.
Today is Tuesday, August 2nd (for a little while longer). To bring you up to date, Vivian's last night feeding was Saturday night. The tube came out at dinnertime Sunday night (by this point no panic calls to a nurse--we take care of it ourselves). Monday morning I took Vivian to physical therapy for first time in 6 weeks. This morning I took Vivian to occupational therapy for a feeding evaluation. Tomorrow Vivian has a cardiology appt. again.
Yes, we have an intense schedule with Vivian, and it will get easier as the weeks go by. The boys are doing well though. I have awesome friends who have helped me out so much I'll never be able to repay them. The boys are finishing up swim lessons this week. I am doing some thinking an mental planning for Jaret's school year, and I have forms to get done for Isaac. He is going to a new preschool called Holloway House, and he is pretty excited about it much to my relief. He was so ornery last year.
Well, I better head to bed! Love to you all--thanks for listening. Will try to get some photos up soon.