Extremely Long Weekend

Last weekend was an extremely long weekend. When Alissa and I arrived home on Friday after work, we had a message from Dr. Hanten at CHOC Mission that Emma was going to be transferred up to CHOC in Orange to have a bronchoscopy. Emma has been doing so well on the ventilator’s minimal settings that they wanted to take her off of it. But, before taking her off of it, they needed to check further down into her respiratory system to see if there was a reason why she crashed the last time she was taken off of the ventilator. If everything looked good, they would monitor her for 48 hours and then transfer her back to Mission until she could have her heart surgery. On Saturday we were told to arrive at the hospital at 10:00 in order to sign the transfer forms and get ready for the ambulance. They finally arrived just before 3:00. Emma wasn’t happy about being moved, but she finally settled down with the help of some sedation. When she arrived at CHOC in Orange, she had some of her typical fits and they had their hands full with her. They were supposed to do the bronch Saturday evening, but decided after reading her history to wait until the morning when everyone would be fresh and they would have more people on hand. She was scheduled for the procedure at 9:00 and just before she started to have an episode. She was gasping for breathe, but fortunately they were able to stabilize her quickly. At that point we went into a waiting room until they did the procedure. About a half hour later the pulmonologist came in and told was happened. They put a scope with a camera down her nose and looked around her airways to see if there were any blockages. Unfortunately, there was. She has a floppy airway that clamps down if she doesn’t have something keeping it open. That is why she has been OK on the vent with minimal settings, but crashes when she is off. The floppy airway is in her trach, and even with the vent, it was not always staying open if she wiggled too much. As a result, Emma is going to have surgery this week. She is going to have a tracheostomy. For the next 6 to 18 months, she will have a trach tube in her neck to keep her airway open. Over time, as she grows, she will no longer need it. Obviously, this was not the news we wanted to hear. I was however relieved to finally know why she crashed 4 weeks ago. I have been so stressed thinking it might happen again. After doing the bronch, the doctor put a new breathing tube down her nose instead of in her mouth. This will keep it more stable and he was able to place it in exactly the right place because of the scope. Today the ENT surgeon will be contacted and the surgery will be scheduled for later this week, probably Wednesday or Thursday. Once she has the surgery, she will remain in Orange at least a week until they change her tube the first time. Then, she could go back to Mission for a little while until she gains enough weight for her heart surgery. Alissa and I were overwhelmed when we first walked into CHOC in Orange. It was a huge change from our “home” at Mission. It is so much more chaotic and huge. Our room is a lot smaller too. It will be a hard adjustment. We felt a little more comfortable after 24 hours since they all knew Emma’s history by then. Thankfully, we have a place to stay 10 minutes from the hospital. That has made it a little bit easier. It looks like Emma will not be coming home this year and when she finally does; she will have monitors and a ventilator just in case. Please continue to pray for us as we have to deal with more setbacks. We were starting to see the light at the end of the tunnel, but now we are basically starting over.