Home From Surgery

We almost did not make it here tonight. Elias is still a little stubborn with the SPO2 sats. He needs just a tiny bit of oxygen to help him get over the stress of the bronchoscopy. There is also still a lot of fluid in the airway too from the bronchoscopy, so that contributes to this need. However, by the grace of God there were not any beds on the unit for him to be admitted. Somewhat reluctantly, but with strong conviction they allowed us to bring him home. He can do without the oxygen, it is just not ideal and we have proven ourselves to be contentious enough parents, not to allow anything to happen to Elias.  His SPO2 are hovering upper 80's to the low 90's. In the 45 minutes we have been home so far he has been at or above 90-92, which is what he had come home from the hospital with a few weeks ago. We will just need to closely monitor him for the next 24-36 hours and things should return to normal. His body just needs a little time to process this fluid that was introduced, via procedure, into his airway and it effects the lungs ability. We should see him return to normal tomorrow evening. So despite a few scary moments today, all in all things went well and had a happy ending.

Thank you all as always for your thoughts, prayers, and wishes today. Even though Elias has had this procedure many times before, it never seems to get easier as a parent in terms of stress and worry. Just wanted you to know that the time you take to communicate with us, particularly during these times of surgery are well received and appreciated.

One final thought I would like to share is about a nurse in the PACU (pediatric surgery center) who has become very fond of Elias. Her name is Amber and she always fights her way into position to care for Elias post-operative. She is a lot like some of our and Elias' favorites from the NICU. The reason I mention her today is that while we were there she asked if we had seen her bulletin board she had done in the PACU unit. The nurses volunteer to update this periodically with various themes in a way to help educate each other. She did an entire bulletin board on Fanconi Anemia! She said she did it just for Elias and that next month she was going to do one on VACTERL association since the two are so similar, but have very different challenges and prognosis. This way all the nurses would understand the differences and learn about two very difficult diagnosis. We were deeply touched by this act, that was amazing. She thought enough of Elias to take time and research this and put it together, very accurately with information and well designed. I asked if she would email us a photo of the boards and she agreed, so I will share it with you all when we receive it. It kind of restored a little faith in humanity and showed that there are people out there who still do these random things that may not seem like much to many folks, but to us and I am certain to the FA Family it means the world. We can never thank her enough for the compassion she shows Elias and the act of kindness she performed with that board. It was a very simple and touching act that made a stressful day a little brighter.