Beautiful, beautiful, beautiful... beautiful boy!

Well Baby and Follow-up Appointments

Today was a big mile stone for little FG as he had back-to-back appointments with the pediatrician and the pulmonologist this morning.  Beginning with his routine two month well baby appointment, we found out that despite the struggles we've been having with his reflux and sensitive tummy, FG is growing exceptionally well.  He has put on several pounds and a few inches to become a 25 inch, 16 lb 8 oz eight week old baby -- which, yes, is off the growth charts!  I have been warning GW and GV to eat their  dinners and not fight about the brussels sprouts for fear that they'll be out paced in growth by their baby brother, but until today, I'd somewhat considered that to be an empty threat.  Suggesting that we revisit the reflux topic again at his four month well baby appointment, we're under orders to merely stay the course as, thank God, it appears to be working. 

The appointment with the pulmonologist was a one-month post discharge follow up - which, I find hard to believe was already 30 days ago.  Fortunately, the appointment was predominantly positive as the doctor was able to reassure us that the lingering post-bronchiolitis symptoms we're seeing are entirely normal for his current place in the recuperation process and that the additional vibrations and grumbling that we've been fighting are likely caused by his reflux and not originating as a new lung infection.  Giving us an infant respirator as well as a large prescription for albuterol, he expressed comfort with the current PT routine and any as-necessary use of the albuterol between now and the end of the summer.  Asking us to make a follow-up appointment for just before the school year, he stressed the importance that we make a game plan before the onset of the next RSV season to ensure that if - or more likely when - FG gets RSV again that it doesn't become another hospital-worthy case.  Appreciating his candor, we're on the books for a late August appointment and hoping that there is nothing worthy of note that occurs between appointments.  

Happily cooing and going while watching me type this, I am feeling pretty good about the trajectory of FG's current status and I pray that things continue on the up and up.  He's such an easy going, content little guy who likes nothing better than eye contact and snuggles so I'm feeling pretty blessed.  Seems like the worst (knock on wood) is behind us.

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. 

Transferred to Peds

HEAR YE, HEAR YE!  We have great news!! After six days in the PICU, FG was finally considered stable enough to be transferred to the regular Pediatric Unit of the hospital two evenings ago.   Having reduced his oxygen levels down to 4 Liters and 21% - which is equivalent to what we're breathing plus a slight puff of humidified pressure to ease his work of breathing - the Intensivists took out his feeding tube, allowed me to nurse and decreed his stats no longer warranted intensive care.  

THANK GOD!

Now that we are over on the regular floor, FG is back under the care of his regular pediatrician's office and one of the attending physicians will be visiting him daily until they decide that he is ready to be discharged.  Finding that he is still having some difficulty breathing - he is continuing to bob his head, retract around his clavicle and in between his ribs, work quite hard to nurse and gasp or wheeze when his oxygen is reduced too much - the main doctor following his case has prescribed a reduction of 0.25 liters of oxygen per day to ensure a slow and smooth return to unsupported respiration.  We understand this is exceptionally slow and, as such, we've been battling the residents who continue to aggressively come in and attempt to fully remove his oxygen, but with understanding nurses, a gigantic "DO NOT TOUCH HIS OXYGEN!" note on his file and a respiratory therapist visiting two times daily he continues to get the care that he requires despite the occasional treatment plan battle.

One of the respiratory therapists has submitted a request for us to receive a specialized consultation with a pediatric pulmonologist in the next few days, so that examination will provide quite a bit of comfort and insight into what we're still dealing with and what we have to look forward to upon returning home.  It is my understanding that this lung specialist is one who is quite familiar with our pediatrician's office, so I am relieved to be broadening our long term health care team for the better.  We shall see what comes of his visit.

The final bit of good news to share is that, since we're no longer in the PICU and barred from receiving visitors under the age of 12 years, FG and I are finally able to see and hug his siblings.  Having only seen them over Skype (I still haven't left the hospital and likely won't), GW, GV and Grandmama were a very welcome addition to our otherwise monotonous environment.  They were quite curious about the medical gadgets, how to "order" toys via the call button, what cookies were deliverable with our dining trays and that allusive magical question of "when can he come home?"  We've assured them that discharge will happen and that it looks like it will be sometime next week . Quite adorably, they reassured us that homecoming can't happen soon enough to suit their tastes as they miss their (their emphasis, not mine) baby brother.

Me too, kids, me too.