Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Monday, October 10, 2011
Fever out of no where?
Little Man is rarely ever sick, besides his FPIES, but could this be a viral illness? Should we be calling his doctors? Taking him to th ER? The home health nurse confirms that the degree of his fever is concerning and that he is still shivering/shaking and burning up- she said to give him a few more minutes and check his fever again, if it was still elevated- to take him in to the ER. I checked and it was 103.7. I don't know what is going on, but I do know sepsis is a number one concern with a PICC line and I have no desire to wait around to see if he is going to get better or worse at home....I head to the ER.
Once at the ER, we are taken back immediately and the assessments begin immediately. His temp is down to 99, we assume the tylenol has kicked in and remain concerned over his symptoms due to his PICC line so blood tests are ordered and an IV is started right away as well as IV antibiotics (thankfully via his PICC). The risk of sepsis is high and there is no time to waste. The blood will need to be cultured to see if it grows any bacteria, but in the meantime, he will be treated for sepsis.
We are admitted for further observation while we wait for more tests. Little did we realize we are also admitted for further tests. We were up most of the night- getting blood draws (had to have one not from his line), they also got a urine sample (NOT fun!) to check for UTI as well. We finally got to sleep around 4am; and were up by 6:30am. In there he was also started on another antibiotic- they were doing two kinds to cover as many "bugs" as potentially could be an infection in his line. Unfortunately (of course), little man is one of a rare few that reacts to Vanco with something called "red man's syndrome". I swear he looked like an umpa loompa! He was getting so red and SO itchy. The RN promptly stopped the infusion of Vancomyocin and the redness quickly disappeared. We waited for IV benedryl to continue giving this antibiotic. He tolerated it better after that but still had some redness and itching.
The next morning, he was doing well and even though we didn't have answers yet, we were optimistic maybe we were "just" dealing with the GI bug. That afternoon he was getting some IV antibiotics so we watched a movie while he stayed hooked up (the IV vancomyocin was infusing for an hour every 6hrs.). Once that was done, we unhooked and went to play- he was running and playing for a little over an hour. Then he was ready to sit down and relax with a bottle. I was finishing my dinner and I noticed he was started to look really tired, and sunken eyes. He leaned over and started moaning- as if he was achy. He then started shaking, the chills consuming his body. I called for the nurse so I could get her to take his temp before I gave him some ibuprofen- he was clearly uncomfortable.
Before the nurse could come in, the Resident was coming to tell me that the scope we had previously scheduled, had been postponed. She quickly noticed his poor tone; falling asleep in my lap....she tried to get him to open his eyes and he couldn't even do that. We took a quick temp - he was clammy, his temp matched as low. Other nurses were coming in to help and getting blood pressures and oxygen saturation's, as well as heart rate and respiratory rates. He was all over the board. He is now having full body bright purple mottling, and his hands and feet are BLUE. His O2 was 84! The next temperature reading was 39degrees C, now he's burning up- from cold and clammy to burning up in 5minutes! I held him close and comforted him....I just wasn't sure how bad this was going to get. But that was it, his body started to relax a bit more, his breathing evened out better and his blood pressure stabilized. We were able to give him some ibuprofen and hook him back up to his IV fluids as well as antibiotics. The senior resident came in to confirm with this reaction and the cultures that were growing; we're dealing with sepsis.
Is this as bad as it will get? Will he have more of these episodes? He is fighting his way through this....