Shhh...don't tell FPIES....

That Little Man has been doing well recently. The only weird symptom is some insomnia that could either be antibiotic related or anemia related. Insomnia but yet some fatigue- so maybe it is both. He has now finished with his antibiotic and the insomnia has evened out but is having some sleep disturbances (crying in his sleep, frequent wakings and not always out of hunger).  We have started the probiotic re-trial, and there are some symptoms, as we also saw with when we first started the probiotics, symptoms commonly referred to as “die off” where as the gut flora is changing, the by-products of the “bad” gut flora “dying off” are released into the system and the body has to rid itself of these by-products and it can produce some variable symptoms. The key is that the symptoms are variable- and not building or progressing. Taking it slow with introduction of the probiotics can help control the die off, if the symptoms are too intense to handle. We’ve noticed a few symptoms but mostly we’ve noticed positive symptoms of giddy mood, energy, good appetite, improved talking (ok that could be coincidental but he’s started using 3 word sentences last weekend). We’ve been enjoying having this baseline, makes me anxious to be doing food trials in just a few weeks- I want to just hold onto this time for a bit longer, knowing that the food trials could very well potentially make him sick/in pain….

The set back of the food trials is on my mind a lot, we were all set to go in 2 weeks ago; and that we didn’t- I feel like we’re in limbo, waiting to go to the hospital for the inevitable and yet looking forward to getting it done…and potentially getting some food for his tiny menu from it, or the very least- learning more about how his body is working and why we’re struggling so much with so many foods.  

We got blood cultures last week which tell us if the antibiotic course has helped his body fight the PICC line infection, to test for any signs of the bacteria in his line remaining after the long course of IV antibiotics. We got the results today- negative! The line is CLEAR of bacteria, no lingering bacteria to cause an infection! This is such great news and now we can proceed to the plan of food trials, where we were a few weeks ago before all of this happened. I have thought (and wrote here about) the setback this infection has caused but there is a peace of heart knowing that everything happens for a reason. With that Faith, I have been able to get through this difficult time of the infection, sepsis, hospital stay; but I admit I still have had lingering difficulties with not knowing or understanding the plan, the next steps. I’m a planner- so FPIES often has me turned upside down. I’m learning the difference between planning for the future while trusting in my Faith to intervene in my plans as needed.


I will admit that I feel better today though, knowing the infection is clear and a plan (re-plan) is forming. He will get IV iron this week as his hemoglobin is dipping low again (low 7’s now, normal is 11); and then next week he’ll have a baseline endoscopy before food trials the following week.
All in His plans…trust….

Complete Trust in God

Do not look forward to the trials and crosses of this life with dread and fear.  Rather, look to them with full confidence that, as they arise, God to Whom you belong, will deliver you from them. 

He has guided and guarded you thus far in life.  Do you but hold fast to His dear hand and He will lead you safely through all trials.   Whenever you cannot stand He will carry you lovingly in His arms.

Do not look forward to what may happen tomorrow.  The same Eternal Father Who cares for you today will take good care of you tomorrow and every day of your life.   Either He will shield you from suffering or He will give you the unfailing strength to bear it.  

Be at Peace then and put aside all useless thoughts, all vain dreads and all anxious imaginations. 

                                                                                  -Saint Frances De Sales