I write to you all for several reasons:
1) It is my coping mechanism, my therapy. And often in writing, I listen to something inside of me that is lost in all the chaos and noise of this world.
2) To inform and update those who are my life. Afterall, it is family and friends who help guide me with their wisdom, and it is their smile or thoughts and prayers that make "loving" the quintessential part of living.
3) "It takes a village to raise a child" -consider yourselves my village for I believe in creating a network. You all know SOMEONE or SOMETHING and sharing that information is knowledge which in turn is power over what seems a powerless situation. These emails are my documented sequence of events.
Thanks to my mother-in-law, Linda, I have a well organized, (Would a Watson do it any other way?) hi-lighted, duo-tang of information on Candida, Enteral feedings, Nutrition for neurologically affected children, Medicines related to feeding problems, etc... It has been powerful to state my opinions and concerns and have a document from the Pediatric Association of Canada to back me up! The doctors look surprised and one even said he had some catching up to do on his reading!!! OH YEAH!!! BOOM, BABY!
I do not know if I had written it in past emails, but my gut instinct has been what I believe is "gastric emptying delay". It seems to me that Isabel's food sits in her stomach for hours and hours after administering only small amounts. I have mentioned it to doctors but the concern with them is obstruction. Once again, I am not heard.
Well folks, at 8:00 this morning, a barium (a dye inserted in the stomach and monitored over live x-ray) showed that Isabel's pyloric sphincter (muscle at the base of stomach) empties a minute amount of stomach content immediately. However, stomach activity is not happening. Sure enough, two hours later, the food is still in her stomach! Gastric emptying delay!!!!
Now, I have learned that a casein-hydrolysed formula promotes delay of gastric emptying! Which, lo and behold, is the foundation of Isabel's Nutramagen formula! However, a whey-hydrolised formula promotes gastric emptying AND helps with gastroesophagul reflux (Isabel's throwing up)!
Also, osmolality (concentration of substance and its ability to be absorbed through the blood) affects gastric emptying as well. The blood is considered isotonic which means an osmolality of 300. Nutramagen is at 360, therefore being a higher osmolality thus requiring more time to digest. PLUS, the dietitian was concentrating the formula for higher caloric intake for growth creating an even higher number!
Other things such as meds, fat chain lengths, and proteins are contributing factors as well.
So... I have spoken with a feeding specialist from Children's Rehab, Dr.Rempell, and asked her for an elemental formula (partially digested, or broken down) that is whey-hydrolysed based, whose osmolality is closer to being isotonic, AND whose proteins are already broken down. Bing bang boom, she does a bit of searching and finds a brand new formula that is all of these things!
We finally got the okay on restarting Isabel's feeds, so at 3:30 this afternoon, Isabel got her first feeding of (I can't remember the name) along with some Zantac (to help with her stomach acid content -I don't know how long we'll stick to that...it is not feeling quite right, but it will be a part of this process for now) and so far, at 1:26 o'clock in the morning, she is doing just fine!!!
We have avoided a jejunostomy, which is what the pediatrician had scheduled to do without consulting us. It means inserting a longer tube through her stomach, past the pyloric sphincter, past the duodenum (first part of the intestine) and into the jejunum. She would have to be hooked up to a constant pump feeding over 16-20 hours/day. Our concern at that time was, she's already missing the mouth part of digestion and the food break-down, and enzymes required to prep food for tummy. We don't want to bi-pass the stomach as well! Not to mention irritating the pyloric. And she could still vomit and aspirate (when it goes into her lungs) stomach fluid, bile, and acids.
We'll try figuring out her nutritional requirements and work with that before scheduling something like that! But at least we know of another option that avoids the Fund placation (a four hour surgical procedure where they tie the base of the oesophagus to keep fluids from coming back up). Doesn't that sound like a smart idea...blah!
And so my quest has begun. I am educating myself on oils, acidophilus, whey, and other nutritional elements that I believe can help Isabel. I intend to design a formula based on her neurological needs, level of activity, her unique isotonic sensitivity, and peristaltic strength(muscular activity of moving food through the digestive process.)
There must be a way to stimulate stomach activity without using meds. I will seek it, and I will find it.
Oh, another mother's-intuition moment... Yesterday, I felt it was time to take her off the oxygen. They seemed reluctant, but I assured them that we could just keep her hooked up to the Oxygen Saturation monitor for the day and see how she tolerates it. Sure enough, we took those nose prongs out and her sats starting rising. Today, she is at 99%! There is a voice in me that I am learning not to doubt. It cannot be proven in a tube, it cannot be learned through medical school, it cannot be bought or given. It is in each one of us, a thread it seems that links us on a different level of understanding to the people and situations that we can feel within us.
I have believed since I was a little girl that something larger than me resided within my soul. It guided me as a child and left me embracing philosophy and humanity in such a way that seemed to impress adults and warm the hearts of my mother and father. It is like a distant thunder in my heart and I have been waiting for the storm. For the first time in a long time, I can hear it again, it is alive. I am alive. And in this new air I seem to be breathing, I will find what my daughter needs, my own "Lorenzo's Oil" if you will. For God has placed within my hands a task as I have asked Him to do since I was a little girl, and I do not intend to present it back to Him until I feel it is complete.
The journey is long, and this is only the beginning. But at least it has finally begun...
"First they ignore you. Then they laugh at you. Then they fight you. Then you win." -Gandhi