Bulbar Changes: Eating and Drinking
The muscles in his mouth, lips and tongue are becoming quite weak which makes it difficult to move food around, suck from a straw and ultimately creates choking problems. We started with eliminating some foods from his diet simply because they were too difficult. These included candy (specifically sticky candies) and cold vegetables these are just too difficult to chew up. Most foods must be cut or minced into small pieces so chewing is minimal. We've had some scary choking moments where it was necessary to use the Heimlich Maneuver, so we work to eliminate any potential hazard. However, as time progresses this gets to be more and more difficult.
In addition to foods, he is also starting to be challenged by fluids. It surprised me, but one of the most choked on liquids is water. Soda, juices or thicker beverages (smoothies or shakes) are easier to digest and reduce choking. The struggle with this is that because his mouth muscles are impacted he is starting to lose his ability to suck from a straw. This makes thicker liquids better for reducing choking but more problematic for sucking through a straw. You never "win" with this disease.
The time to chew and swallow a bite of food probably takes three times longer than it use to. Aside from the bummer that your food goes cold, you also just don't always get enough digested. There are other risks due to bulbar decline including dysphagia, dehydration and aspiration pneumonia.
Sadly, overtime Patrick will lose his ability to eat and drink orally and these functions will need to take place through a feeding tube. As with all ALS problems, it is critical to make decisions and be proactive before they become unmanageable.
Feeding Tube: Decision and Process
Let me point out that not all ALS patients get a feeding tube, either because it doesn't become necessary or they decline to have one. Often the decision has quite a bit to do with the way the disease progresses. A feeding tube will prolong your life so it is an individual decision as to whether or not to have it inserted. In Patrick's case his respiratory decline is not significant yet so if he decided to decline a feeding tube he would likely die due to dehydration or starvation.
The other issue with a feeding tube is the question of timing, when do you have the surgery completed. Insertion of a feeding tube is not major surgery, but with respiratory decline there can be issues with the use of general anesthesia. Often doctors will encourage patients to get the feeding tube put in before the respiratory decline becomes too significant. This reduces the risks of respiratory problems during surgery.
The feeding tube has been one of the most difficult decisions for Patrick. In July, we were told at clinic to get the process moving, now. We've learned that you don't want to let things go until you need them, because if you need it NOW then you've waited too long. Things like ordering medical equipment, having surgeries and making home modifications require time, planning and preparation. So, delaying the surgery was not a good option. This is the first time I've really seen Patrick drag his feet during this journey, he says he's not excited about "a hole and tube in my stomach." Frankly, this is a significant milestone in the ALS journey, the primary causes of death are with challenges to the bulbar region, so it's a reminder of how far he's progressed.
I should point out here that getting a feeding tube does not negate the ability to eat food by mouth. It simply provides another means of getting fluids, food and medications into the body. Over time he will completely lose the ability to orally digest but that isn't the case yet.
Medical Directives
The surgery brought up the discussion of medical directives. In the event of a problem during surgery what did Patrick want to have happen. In addition to advanced medical directives we completed a POLST (Physician Orders for Life-Sustaining Treatment) for the hospital so it was clear what decisions were to be made or not made.
I believe in direct communication although its not fun or comfortable. I want to be sure that I'm doing what Patrick wants and decisions are not made at stressful moments. My recommendation, tell your family what you want, what you don't want and do the appropriate paperwork - it makes life easier for your loved ones and you won't find yourself on the receiving end of decisions you did not approve.
Surgery
The ALS Clinic referred us to Dr. Feinstat here in Roseville and if you're looking for a gastroenterologist I would highly recommend him. We met with him and went over the procedure and the various considerations. There were two different procedures available to Patrick for feeding tube insertion: "the radiologically inserted gastrostomy (RIG), and the percutaneous endoscopic gastrostomy (PEG). Both RIG and PEG tubes are inserted directly into the stomach through the abdomen and held in place internally, however, the procedure for inserting them is different." (Massachusetts General Hospital, Neurology)
We decided to go the PEG route to have the feeding tube inserted and we scheduled surgery for this past week at Sutter Roseville Hospital.
We got to the hospital two hours prior to the scheduled surgery, filled out paperwork and got prepped by the nurses. With Patrick's limited mobility and a hoyer lift being required to move him to the gurney his prep time is a bit more involved. I was impressed with the nursing staff at Sutter Roseville Hospital, while they were transferring Patrick in the hoyer they asked me for the best methods of transferring and were not defensive when I changed the way they were using the hoyer. At one point one of the nurses said its always important to ask family members advice, after all they work with the patient every day. Which I thought was a nice acknowledgment of a caregiver's knowledge and experience.
After his prep time I headed out to the waiting room. Sutter Roseville Hospital is a new facility and its quite open and friendly. While we were waiting, Marley, a hospital service dog, even stopped by for a visit. Now you know Patrick and I love the dogs. So, I settled in while Patrick had his surgery. It's kind of weird sitting in the waiting room with an empty power wheelchair, but that's what I did. It didn't take long before Dr. Feinstat appeared and told me Patrick was fine, but that there was a problem in finding Patrick's stomach and he was unable to insert the feeding tube. With all the concerns we had about the surgery, this was not even on my radar screen. Dr. Feinstat said its not very common and certainly not something he thought was going to be a problem.
So, it's on to plan B, which is having the surgery done through radiology (the other method for inserting a feeding tube). The surgery is scheduled for next week at Sutter General Hospital in Sacramento. Send your prayers and good wishes on Thursday!
On a Fun Note...
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| Moon Tree - Sacramento Capital Building Taken By Uncle Burton |
During the ALS Walk weekend in October some of my mother's family came out from Arizona and they all went sight seeing. Patrick and I have always been fascinated by the "moon trees" that traveled on Apollo 14 as seeds and are planted around the world. During their sight seeing, Patrick asked them to find the moon tree at our California State Capital Building. They found it and took some wonderful photos. They are now seeking them out and taking photos of the ones they find. Here is a link to the video where we first learned about the moon trees, Huell Howser's California's Gold
So, while we were waiting at the hospital we were gifted by photos of the moon tree in Fort Smith, Arkansas taken by Aunt Sherrie while she was on vacation! I'll leave you with some moon tree pictures...
We would love to have you join us in finding the moon trees! Here is a link to where they are located, they are all over the United States and abroad!
Moon Tree Locations: http://nssdc.gsfc.nasa.gov/planetary/lunar/moon_tree.html
Take pictures and post them to our Walk to Defeat ALS -Team Timmons Facebook page https://www.facebook.com/teamtimmons1/, our individual Facebook pages or email them to Patrick at pjtimmons@hotmail.com!
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| Sebastian County Courthouse in Fort Smith, AR Taken by Aunt Sherrie |
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| Moon Tree Plaque at Fort Smith, AR |
