Breath Holding, Extubation, and Support from Friends

The last 36 hours have been pretty rough to be quite honest. Since they have started weaning Aubree off of her pain and sedation meds that she started post op, she now wakes up from any kind of movement or talking and starts crying immediately (not audibly because of the breathing tube). The worst part about this, besides seeing our baby scared and in pain, is that she holds her breath when she starts to cry. Because she has no lung reserve to speak of, her oxygen level desaturates very, very quickly when she is doing this. Also, her heart rate plummets, she turns beet red, and breaks out sweating like crazy. Like I posted on Facebook, the worst of these times she desatted to the 50's, turned blue, and her her eyes rolled back in her head. All o this within less than a minute. Thankfully, the respiratory therapist just happened to be in the room at this time, and she was able to manually bag her with pure oxygen to get her oxygen sats up while rescue meds were drawn and given to her to help her calm down again. In the last 24 hours, she has needed 12 sedation and 9 pain med rescues.

However, the light at the end of this tunnel is extubation. The hope is that a lot of it has to do with the negative stimulus with the tube. We talked with Aubree's medical team this morning during rounds and they are hoping to extubate her to Cpap (pressure support) through hopefully RAM nasal cannula this afternoon. They will have a plan in place and already ordered for rescues that she can have while extubated in case she holds her breath and desats again. One other hurdle in the way is that her airway is very swollen from the breathing tube and there is currently no leak (airflow) around the breathing tube. They started her on a dose of steroids this morning to help reduce some of the swelling and allow Aubree to move air through her airway. We ask for you to please cover our girl in prayer for a successful extubation, that they would not have to reintubate her in a crisis situation. Also, please pray for a lot of her pain and anxiety to subside with extubation. While we know she will still be in substantial pain (she did have major surgery with a titanium rod implanted and 16 cuts/fractures in the ribs on her right side as part of the procedure), we hope that she is much more comfortable not intubated. I think I would freak out pretty good if I woke up and felt like a straw was jammed down my throat that I had to breathe out of!

We are truly grateful for all of the sweet words, prayers, and support bestowed upon us during this time. It has truly been overwhelming, in a good way of course. With yesterday being such a hard day, a sweet surprise and act of kindness that brightened our day was a dear friend of ours, Andrea Segal, who started a gofundme account at http://www.gofundme.com/allinforAubree for people to give money to help with expenses associated with all of Aubree's medical care, travel, food, and other expenses associated with her hospitalization. Many of you have asked for a way to support us financially, so I am sharing this account here. (I am not sure if this link will be active or if you will have to copy paste it to go there since I am posting from my phone.) It has really been such a blessing to have our friends and family come alongside us and bear the trials and share in the joys and victories of all this with us. Really, knowing we have an army of support helps in in all these experiences that are so very hard has made such a humongous difference to us. Thank you so much to all of you for all of the many ways you have shown us and our sweet Aubree support.

Also, as I am typing this post, a code blue was called down the hallway from us. Would you please pray for this child and family? I do not know the outcome of the code situation, but hurt for this family. It also reminds us of the criticalness of the children, including Aubree, in the picu and how delicate the recovery process is. Please remember Madden, Aubree's buddy with Jeunes syndrome who had surgery a few days before Aubree, as he is still intubated from complications with a cold he is battling. However, he is on the mend and on the track for extubation as well.

Just to share some more pictures, below are some pictures of Aubree with us the night before surgery making silly faces together. We can't wait to have our sweet girl back to her fun and spunky self! I love that the one of us kissing her is when she is happiest!