For people who haven't been following Riley's story, here is a summary of her journey so far to get you caught up. I've also imported posts from our family blog to serve as a diary of sorts to detail her journey to this point.
After months with only a diagnosis of "failure to thrive", on Thursday 2/26/09 she was diagnosed with a brain tumor on her Medulla. On Monday 3/2/09 she underwent brain surgery, to remove as much of the tumor as possible. This introduction is being written the same week of surgery, while Riley is still recovering in the pediatric intensive care unit.
The story really starts back in June of 2008 when we first noticed she was having trouble gagging and vomiting food up occasionally after eating. Her weight at 9 months old was 18 lbs 5 oz. 8 or 9 months later, priory to her diagnosis, her weight had slowly dwindled to 17 lbs. 3 oz. She also started having breath holding spells where should be turn blue and pass out...talk about scary! Here is an excerpt from our blog from back in September, that really sums up how we were feeling at that time.
"I took Riley in for her 1 year appointment today. I have been a bit concerned about her weight for a few months now. She is not a picky eater and eats well, but she chokes and coughs during meals and 3 out of 4 times she throws up her entire meal. In March, she was in the 70th percentile for weight. In June, she was in the 45th, and today she fell down into the 14th. She has gained 1 pound in 3 months. I feel like I am constantly thinking about her intake of calories and offer her a ton of food. This is SO unlike Avery who has always been in the 95th percentile. (Riley weighs what Avery did at 6 1/2 months!) This has been so mentally exhausting for me. I do feel that because she is so happy all the time, sleeps through the night, and nurses well nothing too serious can be wrong. Her pediatrician is not all that concerned, but wants another weight check in a month. There is a possibility of reflux, which can be helped with medication so I need to do some reading and watch her for the next week or so. We will keep you updated."
At this point, we were at Kaiser, and we took Riley back in to push the doctors to help us make more progress. We ended up having some blood tests, stool tests, and were referred to the gastroenterology dept. There we saw a nurse practitioner who started her on medicines for reflux, and kept telling us "try this for 30 days, then come back". Eventually she had an upper GI test that showed "reflux", but we already knew should could not keep stuff in her stomach, since she was vomiting so much. But the focus stayed on reflux, and we kept changing up her cocktail of medicines. By December she had made no progress, and finally recieved an upper endoscopy to check her anatomy and for signs of food allergy. Everything was normal.
In January we switched health insurance, hoping we could find a pediatrician who would be more invested in our daughter's health and would actually want her to get diagnosed (That doesn't sound like to much to ask from your pediatrician, does it?). Well we found one, and right away we felt so much more comfortable knowing our daughter had someone who was actively trying to figure out what she was dealing with. Some interesting results to a couple blood tests raised some flags, and lead to discussion of a particular genetic disorder that was later ruled out. The potential implications of that caused some roller coaster emotions.
Also in January we started seeing a new Pediatric Gastroenterologist who ran another battery of tests, to rule out some things that Kaiser did not. Nothing came up. After a couple visits we ask him how he felt about her weight and he said he was "panicing". That's not always what you want to hear from your doctor, but it actually made us feel good to know that someone else was as concerned about Riley as we were and would help her get better. He gave Riley a deadline to try to gain weight or be hospitalized. The first time she gained 8 oz in 5 days, and we had hope. Then she lost it all again, and we knew the next step was a feeding tube.
The last week of February, Riley was admitted to Good Sam hospital in San Jose. The idea was to try a NG tube down her nose to feed her that way but she continued vomiting profusely in the hospital. Since that wasn't working we started talking to the surgeon about doing a fundoplication surgery to wrap the top of her stomach to prevent vomiting and insert a G-tube through her belly to feed her through. We also saw a neurologist while in the hospital, and after hearing her history said it would be a good idea to get an MRI of her brain just in case there was something neurological going on. This wasn't sounding too likely though, given that her development had been totally normal. We had tenatively scheduled surgery for the following Monday, assuming the MRI would come back normal, ruling out anything neurological. Well, the MRI did not come back normal. There was a mass on the brainstem. Our daughter had a brain tumor. That was not the diagnosis we were expecting. But it was a diagnosis. FINALLY.
Before our Ped. GI doctor even told us what had been found the ball was already rolling to transfer us to Lucille Packard Children's hospital at Stanford. We were already being sent to see Dr. Edwards, who was the best pediatric neurosurgeon around. We didn't have to make a single decision, before we knew it, Riley was being transported by a team from LPCH and we were at the best possible facility talking to the best doctor.
I hope this gives you some history, you can pick up Riley's story from here by following the blog posts starting in 2/23/09, or go back farther for more history. Thanks to everyone reading this who have rooted for Riley and prayed for her recovery.
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