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, November 29, 2010
Aside from sleep, he has been doing primarily well and then all of a sudden he started to slide on Friday and by Saturday was an-all-too-familiar-mess. Wednesday & Thursday's changes were an addition of an extra tablespoon of safflower oil in his formula. Friday night two things entered his system: 1)bath water that his brothers had put soap in and 2) his new Rx: compounded omeprezole. Sunday we saw a return back to baseline (thank goodness!) but I was nervous about things getting worse if it was the omeprezole, and little man's daddy was at work Sunday so I skipped that dose; but gave him his dose on Sunday night. He slept well and woke up singing! Today was a very good day- lots of giggles, playing well, SINGING, and eating and napping well. The only worrisome symptom? Hiccups, twice this morning. Yes, hiccups- hiccups he only has had when things are not going well in his digestion....but hiccups alone are no reason to stop a medication that could be helping his inflammation finally heal.
We decided to do the omeprezole trial on the recommendations of the GI doctor, who feels that he is stuck in this cycle of not tolerating food/pain with eating because of unhealed inflammation. Inflammation that is being washed over by stomach acid, causing irritation. This makes sense in a few ways: 1) of course a sore can't heal with acid washing over it, and 2) he has had extra acid production in order for his iron supplement to be absorbed. This is about the time frame we started seeing these back arching, uncomfortable-when-his-stomach-is-empty kind of symptoms, so it makes sense and hopefully is the right fit. Hopefully his body doesn't have an adverse reaction to the medication before it can do at least some of it's job. It is specifically compounded to be free of his allergens, so the intolerance to it would be his body not liking the Proton Pump Inhibitor (ie- stopping stomach acid production). You need stomach acid for digestion, so I am leery of him being on this too long- fixing one problem will just create another. We will let him guide us, as he has done....we will listen to his body and the symptoms and signals he sends....
The GREAT news of today is his weight check. We are monitoring his weights closely- it has helped to see how long it takes for his body to re-coop from a reaction, and clues to what is going on with his digestion and absorption of calories taken in. As I mentioned above, we added a tablespoon of oil (under guidance of our Dietitian) to his formula recipe (he already gets 3Tbsps in 80oz: a very high fat diet right now). The side effect we should have seen was loose stools, but instead we are getting the opposite. Side effect noted. Moving forward. He needs the extra calories, even if they are just fat calories, to regain some lost weight and begin to make some sort of catch up. But even more, he needs to show us that his calories in = weight gained; which in turn show us that his atrophy and inflammation are healing and his body is re-cooping well enough to avoid alternative forms of nutrition (TPN=IV nutrition). So, the scale today gave us good news....10kg! He is now at his high of 22#!! Not only that, he gained almost 3grams in 5days!! We pray next steps allow him to keep this weight gain, while adding to it.
Peaches continue to go well, and tonight he made big steps (celebrating I guess?!) and accepted some millet porridge fed to him by me, from a spoon. This little boy has spoon aversion, too many times I fed him food from a spoon that later made him sick. He prefers to feed himself, but he also has texture aversions (and will not feed himself from the spoon either), and he can not currently tolerate raw forms of food. So, his peaches are in his mesh feeder or in "dots" (cooked, pureed, piped, frozen dots of peaches) that he can pick up with his fingers or his fork. So, tonight I made him millet/peach "dots" and put them in the freezer for him to try over the next few days; and since I had fresh millet porridge- I put some aside in a bowl to see if he was willing to trust me and let me feed him. He was leery at first but he warmed up and took a a few tablespoons worth from me! I was very proud of him. He also had a little mug that he asked me to put water in (as I was pouring water into my glass) and I did and he drank it right down and asked for more! He did this 4 times, drank it down,and didn't spill a drop! This is A LOT of BIG steps in ONE meal and I am very excited about it.
Lots of good things to mark the day. One month ago today, October 29th, he was bottomed out and awaiting a blood transfusion. Now, November 29th: good weight gain, ate from a spoon, ate millet baby porridge, drank from a cup. A day to mark on the calendar. A good day.