So things have been crazy......we switched GI doctors in July and the new one if fabulous. We absolutely love Dr. Gurram. He let us try the formula change and it worked great momentarily. We monitored her weight twice a week for a few weeks and had minimal luck. The dreaded vomiting also came back with a vengeance. We have tried every thing we could think of to keep the food in her so she would gain weight and nothing worked. So after much consultation and education we knew the switch from the G-tube to the G/J tube was coming.
On Friday, August 2nd Madilyn had not gained any weight again, she was maintaining at 14lbs 4ounces and I let them know when I called in her weight check that the vomiting was horrible. We received the phone call later that afternoon that it was time to switch and they wanted us in Milwaukee asap. Arrangements were made and Monday they called and told us to get there now and that she was a direct admit with surgery the following morning. We were absolutely terrified. The thought of being attached to a tube for up to 18 hours a day in order for her to get her much needed nutrition was very scary.
When we arrived at the hospital we discovered that she had dropped to under 14lbs. This was heart breaking...we also discovered that her sugar level was only 42 and this was with normal feedings with excessive vomiting. Her other blood levels were all off too.......poly-carbonates were low and so was her magnesium levels. I was terrified, as sugar levels were a huge problem when the mystery virus struck us in early February.
Surgery to do the EGD scope to check for damage from the vomiting or other problems went great and so did the tube change. There is minimal damage that needs no medical intervention, it will repair itself and although the new tube was shocking to see, it is working wonderfully. She has gained a pound in 6 days and within 24 hours the pink color came back to her cheeks and her eyes don't have that sunken tired look anymore. Within 36 hours after surgery we were thrilled cause her weight had jumped 8 ounces or so already but we were equally discouraged because the dreaded vomiting had not stopped. The team of doctors decided to try a suction bag hooked up through the g-port on her tube and as soon as it was hooked up the vomiting vanished.
The vomiting was strictly excess stomach juices she was producing because her stomach was so irritated. At first she was attached to it 24hrs per day but we're already down to only when she's completing her feed in the morning and while she's awake feeding in the evening. We have been able to progress her feeds enough that we already have 8 1/2 hours per day that we're not attached, by Sunday she'll be down to 14 hour feeds that leave us 10 hours every day of freedom. The only thing she gets in this "freedom time" is her Pedialyte
feed to replace all of the protein and electrolytes she loses through the stomach juices. Even that has reduced drastically. The first few days the replacement feeds consumed 3 hours of our "free time" and today it's down to less than half of that and I do it while she's napping so it's not a big deal.
For how terrified we were of this change we laugh now because it's actually very freeing. She gets plenty of floor/jumparoo and exersaucer time when she's not attached to anything and we work on our sitting therapies and figured out how to attach the pump bag to the walker when she is attached. We also get to go out for walks every day as it is very easy now when we are not rushing in between feeds and vomiting. We actually got to stop and visit with friends the other evening on our walk and didn't have to worry about rushing. It's been amazing.
As for the answers, when we were admitted and they did her labs they started an IV in the middle of the night, running it at an extremely low rate. Dr. Gurram came in bright and early on Tuesday and explained that he knew what the "mystery virus" was from February and that we were definitely correct in saying that it almost killed her. It's very rare and it's called Refeeding Syndrome. When Madilyn had the chronic diarrhea for 6 weeks in Dec/January it ended up making her malnourished (nobody ever said this to us then). The diarrhea stopped the same day we switched to Pediasure and she became extremely sick immediately after that with the massive vomiting and fever which landed us airlifted to Milwaukee. A person can become malnourished within 4 days of being ill and the body depletes all of its stored resources that keep sugar levels, magnesium etc somewhat level, when complete nutrition is suddenly introduced the body sometimes doesn't know what to do with it and it goes haywire and can start shutting systems down. It can cause cardiac arrest, respiratory distress and organ failure. Dr. Gurram told us repeatedly how lucky we are that Madilyn survived. All of the feeding problems multiplied after that and I blamed the Pediasure, in reality it is because her GI tract partially shut down in order for the rest of her body to heal and thrive. Dr. Gurram is very hopeful that with the J-tube and proper nourishment her GI tract will heal and begin to function normally again. It will take time and there are no guarantees but we are hopeful. Refeeding Syndrome is something that Madilyn will always be at risk for since she has already had it once but it's ok because it has a name, we can educate ourselves and her doctors are aware of it now so it can be dealt with properly.
So at this moment we are thankful and blessed. Progress can be made, Madilyn can heal and we can work towards progress with the oral feeding since there is no more vomiting. All in all.............it comes down to we can either focus on the negatives: trips multiplying with the new tube, financial stresses and rare syndromes or we focus on the positives: answers, progress, living, laughing and love........We choose the positive!
