Tuesday, March 17, 2015

Food restrictions

So just when I thought life was getting a little bit easier and my pregnancy diet of eggs, eggs and more eggs was beginning to fade from memory, the follow-up appointments we've had for FG at the pediatricians have constricted my reality to a new level.   While things post-RSV wise are going well for our little angel boy, the antibiotics that he was given at the ER and over the first several days of his stay in the PICU have proven to be so strong as to thoroughly kill off the good gut-bacteria along with whatever other bad bugs may have been lingering. And although this is a minor complaint compared to the risk of facing bacterial meningitis (and therefore a call I would gladly make again), the knock on effects of this complete zeroing of the "pro" biotic scale is enough to both pity his sensitive little tummy and to rant at my rotten luck. 

Causing him to suffer from a constant case of reflux and a smattering of rashes and diarrhea, the doctors have recommended that I assist his recovery from the antibiotics by beginning a series of food restrictions to help his little stomach get back to normal.  As my diet directly impacts the nourishment he gets through breast milk, I am placed in the position of doing what he needs at the expense of my palate or forfeiting the opportunity to breast feed -- which I can flat out tell you is not going to happen.   So, starting the restrictions with all things containing dairy at last week's  appointment, the pediatrician handed me a sheet of paper with all the dietary vocabulary that, until further notice, I need to be leery of: 

Unfortunately, at the follow-up appointment we had yesterday, the pediatrician agreed with me that his symptoms of rash and copious spitting up warrant the escalation of my dietary restrictions to include soy and nuts as well.   Hoping that the combination of these three usual suspects enables his skin to clear up, his spitting up to diminish and his diapers to be more predictable, I have my fingers crossed that some combination of the three will be the key to making tummy wobbles disappear for our quickly growing little one.  

The thing that is surprising me, however, is that as straight forward as it seems like it should be to avoid all things with dairy, soy and nuts, it's a lot harder to find ready made food or ingredients that don't include these in some form or another.  Who knew that soy is in canned tuna, most breads, mayonnaise and cereals?  What's a diabetic to exercise if my go-to quick carbs of chocolate, yogurt and milk are all off limits? How the heck is a girl supposed to attack the world in the morning without a cup of coffee (the "proper" way to make a cuppa in my opinion: two scoops sugar, one part coffee, three parts milk)?  I am sure that I'll figure this out the further we get into this, but daggnabbit! 

I guess on the up side, all the proteins, vegetables, fruits and grains I can eat should be able to help me shed the rest of my baby weight, but with GW and GV sitting here next to me eating pb&j on store bought bread it's hard to see any of my own benefit from this scenario.  For the little man, of course, it makes total sense and I'm not about to cheat, but were this just for me, I'd be off the bandwagon before hitting the doctor's office parking lot! 

FG, may you never doubt how much I love you... 

Friday, March 13, 2015

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.

Friday, March 6, 2015

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.  


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.

Tuesday, March 3, 2015

So what is RSV?

I’ve been writing about it for a while now, but what exactly is RSV?  Have you heard of it? No? Not surprised, neither had I.  

Respiratory Syncytial Virus, or RSV, is as common as the common cold — in fact, it’s so common that most of us get it each year and merely acknowledge it as a prolonged, miserable cold rather than by name.  But while RSV can be dismissed with a few tissue boxes and a degree of annoyance by us adults, little guys with little airways are at a greater risk of complication and may require hospitalization due to the severity of its symptoms.  What makes it all the more terrifying, in my opinion, is that most of us aren’t even aware of RSV as an illness until we’re standing in the ER confronted with it in it’s full severity despite the fact that the CDC reports that all children - and therefore all parents - will have had at least one RSV infection by their second birthday. 

When a child is exposed to the virus, it takes 3 to 6 days of incubation before symptoms really begin to appear.  Initial symptoms of RSV are consistent with a minor cold:  runny nose, decreased appetite, cough, sleepiness and irritability.  Although this is sometimes all that occurs, in premature babies and infants under the age of six months the virus’ mucus begins to build up in their tiny airways and inhibits their ability to breath. So as the virus keeps escalating in severity until day 5 to 7 after symptoms first appear, it isn't surprising that the CDC reports as many as 25 to 40 of every 100 cases progress into full on respiratory infections such bronchiolitis or pneumonia with additional symptoms of fever, wheezing, rapid or difficult breathing and a blue-gray “dusky” tinge to their skin due to a lack of oxygen.  And seeing as infants are unable to adequately move mucus from their lungs on their own and home suctioning techniques have a limited scope of efficacy after a certain point in the virus’ intensification, it is estimated that there are over 125,000 infant hospitalizations for RSV in the United States on an annual basis.  And out of these acute cases, as many as 25 out of every 10,000 cases result in the death of babies under the age of 12 months. 

For those children who survive the average 1 to 3 week hospital stay for RSV(+), the long term consequences for such early exposure to it leaves them vulnerable to repeat infection and additional medical complications later in life, particularly asthma.   Unfortunately because RSV is a persistent virus that is contractable at any time of year there is no slack time for these little ones to develop their lungs and airways without risk of exposure — HOWEVER, there is a much lesser likelihood for those babies born between the months of May and September to become infected as newborns (defined as birth to 3 months of age) whereas those babies born in “peak season” are not only more likely to become infected but to suffer from repeat infections within the October to April timeframe.  For late RSV season babies like FG, the risk of infection does diminish for the summer months, but as they’re still infants for the majority of the subsequent RSV season and their respiratory systems are left vulnerable from the first infection, their risk for another severe infection is again heightened and worthy of professional concern.  

So, what can we do about RSV? 

Treatment wise, you’ve seen pretty much what there is to offer with the support FG is currently receiving:  external oxygen, breathing treatments and suction.  Premature babies under the gestational age of 32 weeks may be able to receive a drug by the name of palivizumab that can help prevent the development of serious RSV, but it does not outright prevent infection with RSV and it cannot cure or treat children already suffering from RSV.  It is also good to know that for the majority of older babies insurances do not cover the palivizumab and it is, unfortunately, largely cost prohibitive without their financial aid.  Prevention is then the only thing we as caregivers and responsible communities can address.  

So how do we prevent RSV?

* Avoid exposure. Limit your contact with people with fevers or colds, this is especially important for premature babies and all infants in the first two months of life.  Indirect or direct contact with infected nasal or oral secretions (i.e. through kisses, shared drinking glasses or “high touch” objects) causes avoidable transmission. 

* Avoid transmission.  People infected with RSV are contagious for 3 to 8 days, however, some babies with weakened immune systems can be contagious for as long as 4 weeks.  If possible, children and adults demonstrating infectious behavior should refrain from participation in group environments and contact with high risk populations: infants, children with compromised immune systems and the elderly. Techniques to avoid transmission include: 

* Wash your hands frequently.  Do so particularly before coming into contact with babies, before and after exposure to large groups of children in a school or day care environment, and teach your children the importance of hand hygiene.  It is also a good idea to avoid touching your face between opportunities to wash your hands. 

* Cover with your elbow when coughing and sneezing. RSV can be spread when an infected person coughs or sneezes into the air, spreading virus-containing droplets that linger in the air and contaminate surrounding surfaces.  Other people become infected when the droplet particles contact their nose, mouth or eyes.  

* Keep things clean.  Make sure that all “high touch” surfaces in your home are regularly disinfected; such surfaces include kitchen and bathroom countertops, sink faucets, doorknobs, stair railings, toys and phones.  Also ensure that all used tissues are properly discarded right away. 

* Further proactive prevention techniques include avoidance of crowds, consistent disinfection of children’s toys, regular washing of bedding and clothing, distinction between “outside” clothes and “home” clothes for older siblings.  Also enforce zero tolerance for smoking in your home and around your baby as infants who are exposed to tobacco smoke are at a higher risk of contracting RSV and more severe respiratory infections. 

So what?

At this point in our crash course education on RSV, HB and I are feeling thoroughly flummoxed that something so common and universally applicable could be so utterly foreign to us as parents and as self-identifiying educated, health conscientious Americans.  I mean we pay close attention to what preservatives and chemicals go into the food we purchase, we know the difference between a carbohydrate and sugar, we use sunscreen, we model healthy exercise behavior for our children, and they regularly wash behind their ears... and yet, the sniffles have completely taken us out at the knees.  The post-traumatic correlation between ignorance and guilt that is besieging my conscience as I stand here watching FG breath in his sleep is enough to bring out the white flag of surrender and promise this little guy a lifetimes supply of cartoons and chocolate to make up for what, I feel, is an unacceptable oversight on my part.  Instead of feeling retrospectively slothful, I could have done more of the preventative steps to ensure his safety... and instead of being blind sided, I could - should - have known what we were up against and recognized the signs of danger sooner than the eleventh hour.

But, all self deprecation and guilt-assuaging aside, I know the enemy now and I sincerely want to take this opportunity to get the word out to you brave souls resiliently reading my rambling because, Lord help me, RSV is the worst thing I've endured -- and I'm not even the one who is sick!  RSV is no joke and, even if you aren't around a little guy on a daily basis, I guarantee someone you come into contact with is and they - we - cannot afford to see something as seemingly harmless as a "cold" rip our world asunder with the loss of that which is most important: our children.  Please educate yourselves and those around you about the Respiratory Syncytial Virus and, as a village, help keep these little innocents safe from this all too real, all too prevalent boogieman.

To learn more about RSV please check out these additional resources: 

        * The CDC website for RSV prevention and treatment as well as their Podcast by Dr. Eileen Schneider

        * The comprehensive RSV Protection website for premature babies and infants

        * The Mayo Clinic definition and explanation of RSV symptoms, risk factors, complications and treatments

Sunday, March 1, 2015

PICU Update

Last Thursday evening, FG was admitted to the hospital with RSV, bronchiolitis, a partially collapsed lung and a whole list of "could be, so we'll treat for it to be on the safe side" illnesses.  Initially put in an isolation room on the regular Pediatrics floor, the first several hours of treatment and attempted stabilization demonstrated that FG had a greater need for external support than the wing could provide and necessitated that he be transferred to the Pediatric Intensive Care Unit.  Moving over here first thing Friday morning, we've been camped out here ever since watching his little chest rise and fall.  I have yet to leave his side for more than the occasional trip to the bathroom (which is soberingly located over on the Pediatric Oncology Unit) while HB has made the long trek home a few times to check on Grandmama, GW and GV.  They, thank God, are hanging in tough with support from some wonderful local families (SP, you are an angel), but it's tough explaining to them what's happening here as things with FG are still quite tenuous. 

Beginning his treatment with 8 Liters of heated, humidified High Flow Therapy at 40% FiO2, the PICU Intensivists have explained that it's still too early to know where FG is in the 10 to 14 day life span of the Respiratory Syncytial Virus.   Knowing the worst symptoms typically come between days 5 and 7, the doctors are unsure if he's past the peak and will remain as he is for a few more days before progressively getting better or if the worst is yet to come...  as he is currently maxing the High Flow treatment option, we're playing the high stakes game of wait-and-see if escalation to the CPAP (Continuous Positive Airway Pressure) mask or intubation becomes necessary over the coming days. In the mean time, the doctors have started an EZPap therapy that uses positive airway pressure to force lung expansion and reinflate his collapsed lung as well as an almost constant routine of nasal and deep suction to remove excess mucus. You can imagine how miserable both of these treatments make FG... poor little guy.

We're also struggling to keep his feeding tube accurately placed in his stomach.  His many leads prevent him from wearing the hospital's mitten-onsies and, with his fingers exposed, his comfort position of his fists near his cheeks enables his ninja-like paddy paws to pull both the cannula from his nose and the feeding tube from his stomach.  And while I'm concerned about the bright red, raw color of his cheeks from the abrasion of his cannula's adhesive, the constant delivery of oxygen and his ability to stay hydrated and nourished trump the superficial irritation and have required some ingenuity with socks and careful use of A & D Ointment to address all of these concerns.  I'm sincerely hoping that the socks will at the very least save him from the unnecessary discomfort and additional radiation needed to insert the feeding tube for the fourth time.

One bit of good news at this point is that the final results of the spinal tap culture came in earlier today and the doctors now know that he is not sick with bacterial meningitis as they initially feared.  As illnesses of this kind of severity move incredibly quickly in babies this young, the ER doctors didn't want to loose critical days waiting for the results if the tests had been positive so they'd placed him on a multi-day course of a broad spectrum antibiotic that would kill any and everything that could possibly be making him sick.  As we're now certain the cause of all of this is viral, I'm thrilled he'll be skipping the next couple doses of medication as only time will tell how his body and the good bacterial will respond to such strong antibiotics.   

More to follow.