Lingering Symptoms... Lasting Fear.

It has been a long, long night.  I know that FG will continue to demonstrate symptoms of RSV and bronchiolitis as his lungs recuperate from the infection that had him hospitalized, but around seven o'clock last night his symptoms changed and scared me half to death. 

While standing in the kitchen holding a sleeping FG to my chest while chit-chatting with HB and Grandmama, I noticed his breathing become much more audible than it has been previously.  Going from the occasional wheeze and sputter to a constant deep grumbling, I placed my hand on his back to better see his face and alter his neck angle in case his position was causing the change or inhibiting his "normal" rate of breathing.  But as my hand came to rest upon his back, I felt it: vibration in his chest that corresponded with the rhythm of his inhale and exhale.  

Calling the pediatrician immediately, the on-call nurse's line promptly said "given his history and the severity of his symptoms, I need to contact the on-call physician to assess the situation."  Within a matter of minutes (rather than the typical 45 to 60 minute lag time I am used to), the doctor was on the phone instructing me to get him into the bathroom with the hot water running and to count his respiratory rate.  Knowing full well that anything over 60 breaths a minute is considered "rapid" and therefore dangerous in these little guys, I wasn't necessarily comforted that his rate of breathing was 54 breaths a minute.   Concerned by this but not "get to the ER right now" kind of worried, the doctor talked me through the process of giving FG respiratory physical therapy by banging on his back - harder than typical of a burping motion - to move whatever mucus was causing the obstruction and, therefore, his new symptoms.  

So sitting on the bathroom floor with my back to the bathtub and the scalding hot water rising into steam behind me, I pulled FG upright on my chest and began to pound on his back.  Within a few minutes, his vibrations and grumbling stopped.  Expecting this to be a temporary solution, the doctor then instructed me to continue this PT process as long as it continues to resolve the symptoms as they reoccur.  "BUT," she says, "if these symptoms return and the PT does not change them, you need to bring him to the ER immediately for evaluation." 

Thanking her and hanging up the phone, I glanced at the clock which now read 8:30 PM and knew it was going to be a long night.  Agreeing with HB that we should pull shifts to watch over him throughout the evening, we set up several humidifiers in the nursery and I settled into my Grandmother's old blue chair for the first shift.   With FG propped upright against my chest, I had to place my book down every few pages to administer another PT session but, thank the Lord, they continued to work.  But four o'clock this morning I couldn't maintain my vigil with confidence in my care so I woke HB who brewed a few cups of coffee, grabbed his work bag and relieved me to sleep until the family went to Mass in a handful of hours (which, admittedly, I have missed since going to the hospital for fear of the crowds).  

So far today, FG appears to be in good spirits and is continuing to respond well to this new routine of respiratory physical therapy.  In talking briefly with the doctor again this afternoon, she indicated that as long as we can keep the mucus moving and prevent the onset of additional lung infections brought about by mucus build-up, he should be fine and shouldn't need to be seen between now and his one month post-RSV follow-up appointments next Monday.  I'll obviously keep them on speed dial just in case, but I feel reassured (albeit thoroughly exhausted and still quite a bit terrified) by the fact that there is something we can actually do to help keep FG safe at this point.  He doesn't seem to mind all the adamant back-patting he's been getting, so from a comfort stand point he seems to be doing alright.  

I truly wish that this waking nightmare of infant respiratory issues would end and we could go back to a normal state of parenting.  I feel like we must be the only third-time parents out there who are treating their third born as if he were the first -- "Don't use that blanket, it touched the floor!" "Wash your hands before saying hello to the baby!" "No, I'm sorry, you may not meet the baby. Maybe by the time he is four." "You want me to take him where? The grocery store? Sorry, I'd rather starve." -- but after the scare we've had I can't begin to justify the risks of laxity and complaisance with any of these children, regardless of their ages.  Obviously I cannot hold GW out of school for fear of germs and GV is at that thoroughly difficult fingers-to-mouth phase, but I unapologetically feel that any unnecessary exposure that we can proactively guard against isn't worth the cost of ER admission.  I am grateful that FG "only" needs constant PT at this point, but I pray to never, ever again be in this same position. 

Discharged home!

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.  

Resting post hospitalization.