3-2-1 EXTUBATION!

Today was a pretty good day......to start. We started the day with our normal routine by calling the NICU for an update on his over night condition. The nurse stated that he passed his trial extubation (removal of the breathing tube) period and the NICU doctors may attempt it today. We arrived to the hospital around 11:30 today and the plan to extubate became an official order. While I knelt down to hold Vanessa’s hand to calm my nerves, doctors, nurses, and respiratory therapists created a small huddle around his bassinet in preparation for this event. Having the support of our parents around us to buffer our nerves, the tube came out and a few struggling breaths and faint cry’s were observed. OH MY GOODNESS... this is a day we have been waiting for. Though they were very faint it was a joy to hear some sort of cry or wince from our baby boy. After a few hours Channing began struggling with breathing and a high flow nasal cannula replaced the normal neonate sized cannula he was originally on post extbation. Talks about putting him on CPAP or possibly reintubating him was mentioned because of his condition of being a premature baby with ARPKD.
Well, 4:30 hit, Channing began to show signs of severe weakness and his temperature was close to 33.5 degrees Celsius (92.3 ferinheit) his doctors evaluated him and consulted other care teams for over two hours to come to some type of conclusion of what was causing this down turn. A possible hypothesis was that he could have an infection somewhere. Doctors ordered to have cultures from all wound sites, mostly all the internal areas established during his OR proscedures. As if Vanessa and I are not stressed enough, we both broke out in tears as we are slowly growing tired from all of the stress. We do however, stay positive, but are so worried about our little baby boy that we have wished and prayed for, for over 4 years.
To sum it up quickly. A CPAP machine is currently being used which has significantly helped with his breathing and his expiration levels of carbon dioxide. If this was his issue, it still does not explain his low temperature. Cultures to test for infection are currently being evaluated in a lab, in the meantime a choice of antibiotics was made and given to him in small dose to proactively fight an infection if there happens to be one; let’s hope not! Antibiotics are challenging in his case are many are metabolized by the kidneys--he doesn’t have any.
We left tonight in dispare, tearing up has we left his room. We know he is in good hands as the care team is working around the clock to care for our little Superman. We are getting tired of being tired. We hope for the best for our little one. This entire process is not natural for new parents, but we are embracing the journey Channing has blessed us with.
We are glad you all near and far are staying informed by our hopeful daily updates.  Thank you for the continuous support!!

Good night all.