Mothers Intuition

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."

Tuesday, March 20, 2012

Emotional Exhaustion

...makes me so much more fatigued than physical exhaustion.    Seeing your child in pain, or hurting in any way is so emotionally exhausting.  Surgery was on Thursday.  Before Little man's surgery, his brother had fevers on Sunday/Monday and progressed into a cough.  We were concerned for him but also for Little man's surgery so took him in to be sure it was just a cough from a virus and the pediatrician we saw felt it was so we proceeded to his G tube surgery.   Looking back, I wish we would have postponed his surgery.   The NG tube and having to reinsert it was heavy on our minds, and knowing we needed to move to the G tube, and there would never be an "ideal" time for a surgery.    

Little Man so rarely gets sick, why now?  He started coughing right out of surgery but we thought it was due to the intubation from anesthesia but when he started having fevers, our concerns grew.   The surgeons/residents were in right away to evaluate things with a fever there is concern for an infection but noted that it was early to see an infection be setting in.   All I could think was, well- this is our Little Man....if it's unlikely to happen, it seems like it will cross his path.  

His fevers continued to persist, despite round the clock medication (compounded ibuprofen and acetaminophen) through Friday.  The Surgery Nurse Practitioner came to the room Friday afternoon to do some home-cares teaching of the site cares, and hooking up and changing the tubing and she was concerned that his cough sounded croupy.  He was then placed on strict isolation- meaning we had to stay in the room.   We could do "therapeutic" walks if he wore a mask (no doing) or had a blanket over his head.  We stayed in the room the rest of Friday- he was feeling so lousy anyway.  He had a chest xray, lab draw, and RSV culture while they continued to monitor his fevers.   He spiked one last fever on early Saturday morning and then he seemed to turn a corner. And, thankfully, spring has sprung early in Minnesota so on Saturday, we were able to put a blanket over his head, head down the hallway and take the elevators OUT- out into the wide open spaces of outdoors!  We walked and walked and walked (well, he mostly rode in the stroller).  I think he overdid it on Saturday a bit though as by Saturday evening he was feeling pretty lousy again, but no fevers so we continued to play for a dismissal (finally) for Sunday.  

All the tests came back negative for anything so we we set to go home on Sunday- thankfully we were able to do so!! This was getting to be a long stay and we were anxious to get home.   Now, I don't know why- I'm exhausted.  I have a lot to catch up on from being gone most of the week and there is of course still the other everyday activities of running a household but we are watching Little Man closely so that he doesn't do any activity that would comprimise his tube site healing.   I'm so nervous about something happening. 

What could happen?   It could fall out!  Ewww and agggh!   We have been prepared for the emergent situation if it should happen but we will pray it doesn't- and take every precaution necessary in the meantime. During the healing stage, if it falls out- it is an emergency, it will start to close up quickly.   Thankfully we are 2miles from the ER so we have been assured and reassured it will be ok, he will be ok, if we take the steps needed if it should fall out.  I hope we don't have to find out.  After the healing (4-6weeks), the risk is still high that it could fall out but it isn't as emergent, and we are taught how to put it back in ourselves (again, ewww and aggh and shiver, but...).   

Enough emotional exhaustion for you?  Well, his brother now has a double ear infection and barely slept on Saturday night- took him in on Sunday and got antibiotics and also discovered his cough is now a wheeze and was prescribed prednisone to clear it up.   Now, this morning Little man wakes up with a high fever, again!  

Off to the pediatrician we went, tube site was evaluated by surgery nurse practitioner while we were there and he was checked for anything viral- and swabbed for Influenza.  If they can find a source for the fever- even if it is "just" the flu, then we'll know what we should be watching for a little bit better.  If they can't find a source for the fevers, he'll have to be monitored closely because a site infection can happen quickly.  Thankfully, his influenza swab came back negative, so that is good news and bad news- the good news is obviously that he doesn't have the flu the bad news is that we still don't know what is causing the fevers.  Maybe we'll never know, likely we'll never know but we need to keep a close eye on him in case it is related to his surgical site. 

Oh, and an added concern- his site oozes a lot more than "normal"...there was concern that it was signs of infection because it was snotty yellow/greenish but the surgeon evaluated it before we left and felt it was "unfortunate" but not infection....unfortunate because it means diligent cleaning of the site and the constant oozing.  Great.   It doesn't hurt him to clean it but it is very sensitive and isn't an enjoyable feeling at all- he fights it a lot, and is upsetting.   It is causing him to resist some of his feeds as well - simply because he doesn't want us touching, inspecting, or cleaning his tubing.  

We know this is the best thing for him and we anticipated rough days with the healing but no matter how much you anticipate, it is still exhausting, emotionally exhausting.    

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