Chase came into our lives on 7/03/1996. Who knew that this little bundle was about to change our lives so enormously. We found out that Chase had hydranencephaly when he was 6 months old. The news that I received over the phone (Chase's mom and dad went to the doctor and MRI) was devastating. Just like everyone else the news was so disheartening. I couldn't accept what I heard and treated Chase as if he were normal.
Fast forward to 2004. Chase had a couple bouts of aspiration pneumonia and I was told a g-tube needed to be put in. I was shown how to change it and how to feed him and was given cases of pediasure for his food. I was told Chase would never eat by mouth again except to taste certain foods.(up until this point he was able to eat soft foods). As the months progressed, instead of Chase getting better, he had one pneumonia episode after another,vomiting and he now had asthma. I had to to get a suction machine, nebulizer and learn new things all over again.
After a year of Chase getting sick every other month I read the ingredients on the can of pediasure. I couldn't believe everything that was in this one can and Chase was getting 9 in one day. I started wondering if he was lactose intolerant. I was also wondering if the pediasure was making him sick. I took it upon myself to try changing his diet and bought a juicer a couple of books and a new blender.Within 24 hours of getting Chase off the pediasure his breathing eased and the vomiting stopped. This was the first change in Chase's diet.
All has been well with Chase until his surgery in 2010 to remove hardware from his leg. He never was one to do well pain meds. His pain management doctor put him on amnitryptaline which Chase had a massive allergic reaction to. As we got him better from that, he continued to not do well. He would vomit at least 2 days a month and then his blood pressure and body temp started fluctuating. By August I took him into his ped and we ran blood work and couldn't find any reason for what was going on. His ped told me that Chase was starting to shut down and she really didn't know what to expect from all this. Well Chase's vomiting increased to once a week his breathing became more labored. I was nebulizing every day, 3x a day.
We decided that we wanted Chase to have a wish to do something. I felt so helpless that we were losing him. I so wanted one fun time with Chase. He received his wish to swim with dolphins and we were leaving in January. I prayed Chase would make it that far as he was getting sicker by the week.
The vomiting increased to 3 days a week. By Christmas I went to his ped asking if Chase's pancreas was failing. She said no - that would have showed up in the blood work she ran. Hospice was brought into our house in January of 2011. By now Chase was in pain vomiting 4 days a week and losing weight. Days before we left for Florida on Chase's wish - Chase pulled through and stopped vomiting. The trip was beautiful. It was so nice to see Chase so happy and healthy. I never wanted to leave.
Our trip was over we came home and we also came home to all the same stuff as before we left, only worse.When your child is so sick you end up praying not just for a miracle but peace for the child. Six weeks ago I got my answer as I looked up pancreatitis. All of the symptoms is what Chase was going through. It said the that the pancreas can no longer absorb meat protiens and starts to shut down causing vomiting to rid the body of the toxicity of the protien. I knew I needed to get Chase off meat protein and start a vegan diet with him.
As I remade and started to reread all labels and learn about being a vegan Chase was getting better day by day. Six weeks later, Chase has stopped vomiting. His BP has leveled off, oxygen sats normal at 98 all the time, and I have not suctioned him this whole six weeks! He also has started to have normal BM's 3x a day every day. This has never happened in almost 13 years.
He is still striving to get stronger every day. He has been anemic for the past 4 years. I am now curious to have blood drawn to see if that has changed, as his color has returned. Calories are a problem with this diet. But as I see it he wasn't getting anything before. He has gained 4 pounds though since he has started this diet and we are hoping that he will at least get back to his previous weight of 78 lbs.
I am also looking forward to going to the doctors and showing them how well Chase is doing now and I truly believe Chase is not deteriorating just yet.We are hoping to get him off hospice here in the next couple weeks. I have always believed in diet being able to fix many problems Chase has just come back from the dead to prove this. It is my wish for all the kids to become healthy and if a diet change can help I am here to help.