Bella continues to battle little bugs. She has not had full strength formula for longer than 24 hours in the past 2 weeks. Thank goodness for Pedialyte. I think we should buy some stock in the company.
Bella’s g-button came out twice this past week. The first time was on Tuesday. We had to have a contrast study to make sure we had correct placement and had to see pediatric surgery. It’s always such an adventure to go downtown and see 5 doctors with an EMT, Paramedic, and RN. I am grateful for them though. She was vomiting and developed a fever. So now she is on antibiotics. The track for the g-button takes about 6 months to totally heal. The second time (Friday) it came out, we just stuck it back in. This time we replaced the whole thing. They figured out the balloon that holds the g-button in place was leaking, so it wasn’t holding everything together the way it was supposed to. We also learned from her contrast study that she is refluxing like crazy. UGH! Poor thing. She lives in a 30% – 45 % angle all the time.
She spiked a fever on Thursday night and has been requiring some oxygen supplementation occasionally at night. She was just miserable all Thursday. She didn’t want to be held or look at anyone. Just leave me alone and let me sleep!
That’s the bad, now for the good.
The pulmonologist felt that her 1 hour collar trials were going so well, she could move on to 2 hours on an HME three times a day! Wow – that is huge! What is an HME? When you and I breathe, the air comes through our nostrils. The air is filtered and warmed there before proceeding down to the lungs. The HME acts like a nose.
This picture is from http://www.tracheostomy.com. It shows a cute little guy wearing an HME over his trach.
I can’t believe she has gotten to this point so quickly! Way to go my strong little fighter! When she is off the vent, she is able to cough more easily and get out more secretions. We watch her like a hawk and suction a million times. We have decided to work up to our goal of 2 hours 3 times a day. So we are starting at 1 hour 3 times a day – as long as she can tolerate it. She has been sick and weak, so it hasn’t happened yet. But we are working on it. She is progressing. I can’t ask for anything more. Despite being sick, she just keeps moving on. What a wonder you are little Bella!
Bella in her swing and sitting up in bed. She loves to sit up. We can’t wait for her chair to come!!
Daddy holding a happy Bella (she was feeling well at the moment). The way I like to see the vent – OFF! :)