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I have been trying to get this update out for the past 2 weeks…needless to say things have been very busy. Ken is doing great and his surgery went very good. The procedure took right at 3 hours and during that time they also removed 9 teeth which had been causing him a lot of pain. The first night they kept him sedated and on the vent for comfort, and by the next morning they took him off and he was breathing just fine on his own. He has only had to use the Trilogy (a new to the market ventilator) at night and in bipap mode. He has adjusted to it very well and I am extremely proud of him. The only real glitch we have encountered is that he has not healed up inside yet, meaning that his throat is leaking into his neck. This is the reason he had to stay 10 days at the hospital. The surgeon opened the incision in his neck for drainage and I have to pack it 3 times a day. While the drainage has lessened a great deal, we are still uncertain if it has closed up yet. He is anxiously awaiting his visit to Mayo this Tuesday for what we hope will be good news that he can begin eating. We are very glad to be home, even though we are faced with other challenges we know soon we will adjust to the new normal. We currently have a home health agency sending a nurse and CNA, however we are pursuing other options. We have a call buzzer that he is able to operate with his head so he can alert me that he needs something and we have worked out a letter system so when his computer is not in front of him he can communicate. Lots of adjustments but God is good. Ken is still experiencing some pain associated with the rather long incision across his neck. His spirits are good and determination is higher than ever. I thank you all for your continued prayers for Ken and our family…I am glad to say God is answering. We feel extremely blessed to have such a loving and supportive family, they are the BEST. We still have a challenging road in front of us but know that God is faithful and will be with us all the way.
Currently, Ken is doing very good…with the exception of ALS. He has not been online or able to use his computer since last August. He has just started using an Eye Gaze device so he should be back at it soon. He can barely speak, but still has lots to say. Most of his nutrition is via feeding tube, although he can still eat a little by mouth. He can just barely move his legs and he can move the thumb on his right hand a little. His diaphragms are getting weaker, however he is still only having to use his bipap at night. He is having some problems with secretions causing him to choke. Because of the increase in choking and since we know in the not so distant future he will be needing a ventilator to continue breathing he decided now is the time to move forward to the next step. Tuesday, April 6th Ken will be going to the Mayo Clinic in Jacksonville for surgery. He will be having a Total Laryngectomy, which is not the standard procedure for ALS patients, however we feel this is the best option and should be considered by more pALS (person with ALS). Currently there are only a handful of ALS patients who have undergone this procedure, and we hope Ken’s experience with this will help others to consider this option. Typically when a pALS needs ventilator support they get a tracheotomy, however there is still the problem of secretions getting into the lungs which often times causes aspiration pneumonia. The Laryngectomy will eliminate that risk by removing the voice box and sealing the larynx, which will protect the airway from secretions and food. This means that after the surgery he will not be able to speak at all…since his speech is already compromised a great deal, we feel that it will be a very short time until that is no longer an issue anyway. Very soon after the surgery he will be able to start eating again, and this time without the risk of compromising his airway. Anyone who knows Ken, knows what a trail blazing, trend setter he is. He is excited to get busy again raising awareness for ALS and hopefully inspiring others to keep fighting. We will post updates as I am sure there will be good and bad days. Our faith is strong and we know God has a plan. If you are in the Jacksonville area and would like to visit while we are there, please let me know and we will try to make it happen. Until Ken is back on his email, you can email me at Glenda@kensjourney.com and I will be sure he gets the message. Prayers and encouragement are always welcome and greatly appreciated. Thank you all for your love and support, Ken & Glenda |
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