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... 

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.