Thanksgiving and what we are thankful for this year, has taken on a whole new meaning. Normally, Thanksgiving (and Christmas) are held at our house. Our parents and grandmother's come over. We fry a turkey and I make pretty much all the fixings to go with it. Our mom's usually bring the desserts. We hang out at the house all day, enjoying each other's company and enjoying a huge feast.
This year, we slept in a little because we knew who his day nurse was going to be and were comfortable sleeping in a little. I was sick last night,REAL sick and little bit so today (food poisoning -ugh), so we got a late start because of me. My parents drove up with Travis and some food mom cooked yesterday. It wasn't Turkey and dressing, but it was homecooked and we eat SO little homecooked food these days, whether we are here or at home. So we all went to Duke when they got here about 10 and visited with Riley for a while then went back to the hotel to eat. Then they all loaded back up to go visit with Riley while I stayed here and napped, since I wasn't feeling great.
This year, some of the things we give thanks for are all our friends and family and lots and lots of complete strangers, that have supported us, and prayed for us and with us and sent us words of encouragement, made us meals, offered to help out with Travis, offered their homes to us, and the list goes on. That God really does answer prayers and make miracles happen. That Travis is SUCH an understanding and compassionate child. This journey would be SOOOO much harder if he wasn't. That Riley is such a strong soul and a fighter. Dozens of doctors, nurses, nurse practitioners, surgeons, lactation consultants, and volunteers who are so good at what they do. We are thankful for NHRMC and their NICU team. As much as I complain about the way things are here, we ARE thankful for Duke University Medical Center. No matter how imperfect, any place that saves your child's life, you have to be thankful for. We are thankful for Duke LIFEFLIGHT, and whoever invented helicopters,antibiotics, narcotics, strong, healthy lungs, deep breaths and a strong heart, and still healthy intestine. This is just a partial list,but includes the things that are high on our list in no particular order.
Another thing we are grateful for, is the friends we have made while here. When a dad tells you their baby is doing great now that she received a tracheostomy, and you can share a laugh with "your baby breathes through her neck, and ours poops out of his stomach...not everyone can claim that!", you realize what a sick sense of humor you have to have sometimes to deal with all that occurs to a really sick baby in the NICU and your grateful for someone who understands it. When you celebrate the successes of the baby laying in the bed next to your childs and they celebrate yours as well, it makes the days go by faster.
Riley is now off the ventilator. They took him off of it at 3:30am. He has continued to have some de-sats, the worst one from holding his breath in pain, to the point she was about to bag him. UGH. In order to take him off the ventilator, they had to decrease the amount of morphine he's getting. Not the frequency, but the strength of the dosage. they took him off the vent because it had a leak in it and he was having to do the majority of the work himself anyway but we actually wish they would have kept him on it, and kept up the higher doses of morphine, as he's not nearly as comfortable today. His belly has swollen up quite a bit today so that can't be helping. The rash he had yesterday, with the exception of the area around his incision, seems to be coming from the morphine. It gets worse after every dose and then fades.
The most troublesome thing is he seems to have a condition they are calling cellulitis. This is a skin and tissue infection. It's around his incision and he is now getting antibiotics for it. I am beginning to wonder if he will EVER live a life that is antibiotic free. This time it's vancomycin and zoysin. If these do not make it improve....they will have to take him back to the operating room and investigate. Obviously this is not what we wanted to hear, but are hopeful the antibiotics will take care of it.
So that is about all for today I think. We hope everyone had a safe and Happy Thanksgiving.