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."

Wednesday, June 27, 2012

Murphy's Law

It seems like whenever I saw something, it happens.  I was dragging my feet (or burying my head in the sand) to make phone calls to the care team.  Any mom of a chronically ill child will relate that it is a lot of work to coordinate everything, and sometimes you just wish someone could help with that.   In the past, I've had a misconstrued idea of what that entailed for a chronic perception was that preventive care was the goal.  That, with known chronic issues surrounding a health illness, it would be beneficial to stay on top of problems that repeatedly come up, to steer care in the direction of health.   I'm serious, even if that sounds like a sarcastic tone (those reading this that know better)- I honestly had an expectation far from the one we experience with little man's chronic health needs.

So, our complex care nurse called yesterday morning to let me know that our pediatrician looked at little mans labs and was very pleased with how they looked that indicated he responded well to the IV iron.  She then relayed that "he would like to see him back on the Alimentum as it seemed to provide the necessary nutrition while working on additional foods by mouth".  I literally chuckled outloud...I had to catch myself and back up because I didn't mean to sound disrespectful and had to remind myself that the Pediatrician had told us he would be on on vacation this week- he is checking these labs from home out of his concern for our little man and follow up....and he must've just forgotten that we are not on the Alimentum, that that was causing enteropathy and caused this dramatic decrease in iron and hemoglobin.   So, I told her that yes- we would continue the ProViMin but he would not be getting the Alimentum.   I go on to tell her my thoughts on where he is at right now and where our plans are for him in upcoming weeks, who I need to call or coordinate discussions with....saying, I am also very pleased that his labs look so good- that his body responded so well to the IV iron and that he must be tolerating the ProViMin well too because he has never responded this well to the IV iron before (ProViMin helping him stay ahead of the line).  I am very encouraged by that.  This is also because we have been pushing the bottles- so that he gets as much of the ProViMin that he can during the day, which means less eating, even of his safe foods- because he isn't as hungry because I've just had him take a bottle (every 1.5-2hrs pretty much around the clock).  The ProViMin is a powder and it is mixed with his hemp milk and a few weeks ago, I asked the dietitian what the iron content in it was -- he gets over 2-4x the iron his body needs (if he didn't have decreased stores, she wasn't positive what his needs would be to replenish stores and deferred that discussion to our GI), but also that it provides well over the protein that he needs in a day as we are hitting those numbers well (which is good because of the enteropathy, he was dumping proteins in his stool and his stores were low).   So, we've been pushing the ProViMin to get these (iron and protein) levels restored, as long as he tolerates it; and to allow his gut the chance to heal from the Alimentum so we can do food trials again soon.   We need a follow up with the dietitian to find out where he is at now that I have the recipe of the ProViMin and hemp milk and how much he takes in a day all worked out and to help decide a list of foods for the upcoming trails. 

I also discussed how he hasn't been sleeping well at night and having some moodiness during the day that we aren't sure what it is from but doesn't seem to be from foods that we can corelate so I was curious if the genticist thought if it was from his low carnitine levels again.  Carnintine is an amino acid found in meats and dairy - which he does not get; it is supplied in formula's but there is none in hemp milk....also none in TPN (which is when we first discovered he was carnintine deficient).  Carnitine helps keep blood sugars stable and so with a low carnitine- maybe his body isn't regulating his blood sugars as well.  The role of carnitine and the effects of the deficiency is much more complex than that but that is what we saw most from Sam being affected by being deficient.   

We also need a follow up with the GI doctor- to discuss further this enteropathy and how he is doing now, and to get a letter of medical necessity for the ProViMin so we can see if Insurance will help cover the costs; and discuss next steps regarding foods trials and the tube.  

I also need to call the home health agency we work with and find out if they can come out for some regular visits to see if we can get Sam acclimated to his tube again - utilizing nursing support initially and then adjusting to us using it and him being comfortable with that.  Even if we just do 1-2feeds/day and we do that to give him the missing calories or nutrients in his day - so we can have less focus on a bottle every 2hrs, and more focus on allowing him to EAT (safe foods and trying new things).   And to do this- we would use his tube to give him a "feed" with the nurse but to also trial some foods- to expand his choices on his menu (and then later work on getting him to eat these foods that we determine as safe).  

He also needs a weight check and his 3yr.well child visit.  

I relay all of this to our complex care nurse.   She says, ok and goodbye.   

One message, one internal note cc:d to all his providers for her to send to almost all of his care team would save me multiple phone calls and get everyone on the same page at the same time, coordinate everyone's insights and recommendations and would be the ideal thing for him in this patient-centered care environment we are supposed to be belong too.  But, no- she's only there to pass along the message from the Pediatrician.  I know it's all my job, he's my son- I just can't help but wish we had more help from time to time; so I could be more mom and less nurse. 

Well, at least I ran through my own mental list I can get started some phone calls.....head out of sand- here we go....

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