In January 2011 my world was turned upside down with a diagnosis of type 1, insulin dependent diabetes. It is only now that I'm living day-in and day-out with the impact of this disease that I realize how easy life was before sugar was an issue... This blog is to help others understand type 1 diabetes and the journey I am going through because of it.
HB loading FG into his
carseat for the drive home.
At just over a week on the regular pediatric unit and two weeks for this hospital stay in total, FG is finally being discharged home! Having worked with the Pediatric Pulmonologist closely over the past few days, FG has successfully been taken off of his oxygen cannula and we know with confidence that he is now officially in what is being described as the "post-bronchiolitic" phase of this illness. Essentially meaning that he's no longer actively fighting off infection despite the continuation of persistent visible symptoms, we are leaving the hospital feeling confident that this bout with RSV is behind us and that we know what to expect of the new normal. He'll likely go on bobbing his head, wheezing and occasionally retracting, but unless things dramatically worsen, this is - for better and for worse - how it's going to be for the foreseeable future. Warranting a few follow-up appointments, a serious amount of hand sanitizer to be stationed around the house and a complete bar on all visitors, we're heading home with our precious baby boy.
Despite our homeward bound jubilation, I think HB and I are finding this experience to be a lot more sobering upon reflection than it necessarily was while we were slogging through the worst of it. The realization that we. almost. lost. him. is weighing incredibly heavily on our minds and the commentary from our pediatricians over the past twenty-four hours has only solidified our terror rather than pacifying our in-the-moment fears:
* Yesterday we overheard one of our doctors brief the group of rounding residents about FG's progress before she came in to fully remove him from the cannula. As the oldest practitioner in the office, Dr Clapp has seen her fair share of RSV cases in her forty years of practical experience. "But," she says with stern authority as she points to FG's room, "this is the worst case of RSV in a two week old that I have ever seen."
* Then this afternoon, upon finishing his final exam and just before signing the release papers, Dr. Fox - the same practitioner who initially saw FG before calling 911 on February 26th - was bantering happily with HB when he casually expressed his sincere relief and surprise that FG made it through the first night at the hospital. Not having realized how close to death our health care providers considered our son to be, those initial hours of overwhelming ignorance and shock feel all the more painful in hindsight despite the distance we're placing between ourselves and that time and place.
It's only now that I am sitting here in the living room watching FG peacefully sleep in his baby swing that I have begun to comprehend what those words mean and the implications of their occurrence. Heck, it's only now that I am fully processing the meaning of the repeat question we'd received about altering his baptism schedule. The little life of my newly one month old could have been taken from him and the glue that his presence is that my life together could have vanished. I do not know the soul-consuming grief that it must feel to loose one's child, but the empathy I have from this near death experience for those who have... leaves me breathless and at a loss for words.
There is no fiber of my being that I wouldn't trade to save him were I to choose him or me. There is no amount of holding and hugging and kissing of this baby that will be enough to satisfy the physical manifestation of my love for him. There is nothing in my life that is more important nor is there anything else that I have or will contribute to the world that I am as proud of than him and his siblings. I cannot bring myself to the mental brink of disaster that the "what if" question presents, but, thanks be to God, today is not a day that I need to find out the answer to such a horrific question.