Another week, another ER trip

Emily earned herself a trip to the ER yesterday, after a long 4 days of trying to avoid it. On Friday, she had a bronchospasm that lasted three hours. It was horrible, but she was managing to maintain her oxygen saturations, so I waited it out. It did worry me and I packed a bag for the hospital, but then of course the spasms stopped. It was definitely the scariest breathing episode she's ever had. The GOOD thing is that it proved that the trach was the best thing we did for her. She was able to breath and get nebulizer treatments and suctioning without a fight. What a relief the trach is! Saturday she had another bronchospasm that lasted an hour. During the spasm I gave her a dose of Ativan, thinking it might calm her down. Thirty minutes later she was still spasming so we gave her breathing treatments even though they weren't due for an hour. Then she got some other medications that she was due for, and finally it calmed down. This time when she was spasming, she was not maintaining her saturations. Again, thank heavens for the trach! I was able to hook her up to oxygen and manage her at home. I did page the pulmonologist when this episode finally ended though, because I needed help with managing these. She called in a prescription for Atrovent nebulizer treatments, and told me to try that along with the Ativan in the j-tube next time it happened. So of course, Sunday, it didn't happen at all. We thought that whatever it was, was over. Until Monday morning, when she woke up doing it at 8 AM. Her morning nurse banged on my door to wake me up (Don't judge! LOL Jacob had the day off from school so we were sleeping in). She said "She's not breathing good! Come see please". Ugh, nothing like that to get a Mama out of bed quickly. I went in, and she was spasming again. We gave Atrovent via the nebulizer, Ativan via the j-tube, and waited a little. It stopped after about 20 minutes. We thought we were good, and then it started again. It went on, off, on, off. I paged the pulmonologist again and said we needed to be seen. She told us to come to the ER. We went in and did a chest xray, trach sputum culture, and some swabs. Her xray was normal and her swabs for RSV and Influenza A & B were negative. They tested her CO2 end tidal volume, and it was good. The decision was that we could go home, and raise her oxygen a bit while we wait for a sleep study. We know she has sleep apnea, and it's most likely central apnea. The pulmonologist feels that she will end up on a vent when she's sleeping, and wants to do part of the sleep study with her awake. Seems like an oxymoron to me. ;) She wants to get a better idea of what the spasms are. So, here's to another week of another journey. Hopefully it was the last issue we will have for a while! We have been home from the hospital for 3.5 weeks, which is a pretty good run for us lately!

Doing well at home!

Emily had trach surgery on January 19th. She was discharged directly from the PICU on January 27th, the day before my birthday! What a great birthday present. She did great during the trach surgery, and was smiling within 6 hours of surgery. She is amazing! She came off the vent in recovery and was off oxygen and on room air within 24 hours. :) She's a rock star!

Being home was a bit rocky at first, but we are settled in now. There is quite a bit more care involved now, and leaving home is quite a feat. The number of pumps/machines/bags that must go with us is a bit nuts. In the end though, she's doing fantastic so no complaints.

Tomorrow is a big day for us. We are meeting with the most involved in Emily's team of doctors - GI, TPN nurse, Neurologist, Palliative/Pain Dr, and social worker. We have been asked to sit down and detail what we want in the future for Emily. What our choices are about her medical care. For example - if she was to become septic and need to be put on a ventilator, I say do it. Give her a chance to fight the infection and recover. But if she is no longer alert and aware and isn't going to recover and come off the vent, I don't want her on it. I am not willing to keep her alive in a shell of herself. Her personality, her facial features, her love - those are Emily. If we lose those, we've lost her. This meeting is not going to be fun. I am happy that my husband has taken tomorrow off of work and will be going with us. Emily has some new nurses finally, and a nurse will be with us as well to keep Emily occupied and entertained. If you have a moment, please pray that we get through this meeting and can come to some decisions. Look at this girl - this is what we fight for!