Wednesday, September 24, 2014
It's been a while since I did an update but it's been really busy here. I can't tell you how much I appreciated all of your comments after our hospitalization in July. We left the hospital with a bilary drain bag to drain the bile from his gallbladder. As you may recall, Matt was admitted to the hospital last July for breathing issues and it was found that he had a gallbladder infection. They believe the gallbladder infections/swelling pressed up on his diaphragm and collapsed his lung and then he got a pneumonia as well and was on a ventilator briefly. When the antibiotics weren't working, they did a CT scan of the abdomen and found the gallbladder issue. They put in a bilary drain immediately and that routed the bile out of the gallbladder. The gallbladder was sluggish with the infection so they don't want more bile in there. Re-routing the bile gave the gallbladder time to rest and they were able to get rid of the infection. While they can't be sure the gallbladder infection came first, it seems most logical since he hasn't been hospitalized for pneumonia in almost five years since I changed his diet and added Now Foods Organic Coconut Oil. Can you believe that? Almost five years without a hospitalization? Still exciting to write that!
Anyway, the bilary drain stayed in place for six weeks and I had to track all of Matt's bile discharge for that time. I also track his urinations and bowel movements. The bag was challenging to work around especially when changing Matt's diaper since it kept falling off the bed and I was worried it would come out. (You can see the bilary drain bag in the above photo. This photo is from August 25th.) We were told that the drain would be removed in six weeks however when it came time to remove it, interventional radiology informed me it would be changed and not removed. It took 20 phone calls and finally I thought everyone was on the same page for removal however that wasn't the case. The hospital has some serious communication issues and I won't go into detail because it was such a stressful time but the bottom line is that the drain was removed.
As I mentioned, I wasn't given any instruction when I left the hospital. I went online at gallbladder.com to see what foods were recommended. Essentially, it's a low fat diet. There wasn't any foods that I was giving him that weren't on the recommended list with the exception of eggs. That appears to cause problems for many people. I should mention that Matt did not have gallstones nor do we have any family history. They also recommend a diet rich in Medium Chain Fatty Acids and recommend coconut oil. Check! They do caution not overdoing the coconut oil with a gallbladder infection but overall I was doing most everything right. I should also mention that Matt did not have any gallstones or family history and they do not believe his issue was diet related at all since his mostly organic blenderized diet is so healthy. During this time, I also spoke with his dietician who specializes in blenderized diet to see if I needed to change anything. She said no, it's basically a low fat diet. Matt eats whole foods, mostly organic and real fats. He eats around 1300 calories a day. Because he doesn't move much, I have to keep his calories around here or he'll gain weight. He is 6'2" and weighs 202 now and was 209 right before the infection, which was really high for him. He doesn't eat anything artificial and no soy of any kind. I use organic kefir and real butter. His diet is basically 50/25/25 with 50% from carbs, 25% protein and 25% fat. I also wanted to get him on a probiotic when he got home from the hospital. The dietician had recommended one previously but I never started Matt on it. It's a powerful probiotic and after the infection, I wanted to be careful not to stress the gallbladder. I read that that to rebalance his gut bacteria after a hospitalization with antibiotics you should give them a probiotic with 100 billion after it clears the GI tract. Since I wanted a more mild probiotic, I just ordered Andrew Lessman's Ultimate Friendly Floral and gave Matt 100 billion/day for 7 days. I'll be starting his new probiotic that the dietician recommended next week.
Other concerns I had were removal of the gallbladder. I didn't want to do this since Matt is a high surgical risk and because you need your gallbladder. I've read that gallbladder removal is linked to Type II diabetes and poor gut health. Your gallbladder is essential for processing fatty acids and for a guy like Matt where nutrition is essential for good cognitive health and for his central nervous system, I was against gallbladder removal. In my opinion, old school advocates removal and current opinion, or at least those people that value nutrition, feel it's criminal to remove the gallbladder. Certainly there are people who are functioning without a gallbladder however if you do some additional reading on it, there can be issues with diarrhea, etc. after removal. I want the absolute best for Matt and that means optimal nutrition. Unless we have another serious issue, I want to keep his gallbladder.
Other questions I had regarding Matt's issue was whether or not it might be related to his progressive neurological disease. Was that causing the sphincter of oddi to malfunction? (The sphincter of oddi is a muscular valve that controls the flow of digestive juices (bile and pancreatic juice). Matt's disabilities were caused by the ARX gene mutation and there are issues related to pancreas due to the gene mutation however other than that, not much research has been done since there are such few diagnosis. No one seems to be able to answer this.
During this time, I also was referred to a book on Irritable Bowel Syndrome. While Matt doesn't have irritable bowel syndrome, I found it helpful since it covers digestive issues in general. Of specific interest to me was the allergy testing. I had asked for some allergy testing on Matt over a year ago and we had set up an appointment with an allergist and then cancelled it when Scott injured his back and couldn't lift him into the car for the appointment. I am unaware of Matt having any allergies however since Matt is nonverbal, I thought it might be prudent to have some allergy testing done to see if he had an allergies. After his recent gallbladder infection, and after reading this book, I decided to ask for allergy testing. As a precaution, I always keep Benadryl in the house in case Matt ever had an allergic reaction to anything and I knew I would feel better if I had some allergy testing to rule out any allergies. I'd hate to find out I've been feeding Matt a food that he's allergic to! In addition, a few days prior to his admission, I had tried a new food for Matt. I had some organic jam so I gave him a peanut butter and organic jam sandwich as part of his lunch. Was it possible that he had an allergic reaction to the peanut butter? (The peanut butter was all natural, just peanuts and oil however any high fat food like peanut butter can trigger a gallbladder attack.)
I met with his GI doc today. He doesn't believe the peanut butter caused anything. I discussed my concerns over the allergy testing and he agreed to do the blood testing for foods that Matt eats regularly. We had testing done for rice, tuna, gluten, peanuts, beef, egg white and egg yolks. We'll get results in a week or so. Normally, I feed Matt the following organic protein sources each week: organic chicken, organic beef, organic black beans, albacore tuna, organic eggs (from a high quality source-check the Cornicopia Institute for their ratings) and then I'll usually do a soup or repeat some of the sources. Other than that, the GI doc didn't recommend any other changes. I hope the test comes back normal however I'll have some peace of mind either way. I'd hate to be giving him a food that he eats regularly and find out he's allergic to it!
Matt appears to be doing pretty well. One interesting thing that happened after he was released was that all of his coughing and saliva issues stopped. He's had issues with saliva for years and as you may recall, he had botox injections in 2009 (unsuccessful) and we had extensive conversations about surgical removal of his parotid and submandibular glands to reduce secretions. Ironically, not only did all of his coughing and saliva stop, but I didn't have to use his suction machine for six weeks. I used to use it daily. I also had to do nebulizer treatments once a day and sometimes I could skip a day or two but I could never go more than three days without it. Since July 18th, I've only used the nebulizer twice. This is amazing. We are hopeful that this issue continues to resolve the saliva issues however I am sure that may not be the case.
In summary then, Matt is doing quite well now. I took this picture at our doctor visit last Friday. You can see he's lost some weight however he looks pretty good overall. I have to work harder than most to keep him healthy since his body just doesn't work like most people's. He continues to be a really happy guy and I am thrilled he's feeling better.
I have some more exciting news to share with you tomorrow!
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