a quick update on surgery tomorrow

Just sitting here feeding Eric his last meal he is sneaking in before midnight (Kraft Mac n' cheese and peaches). We wanted to send a quick update to let you know that we are feeling at peace about the feeding tube surgery tomorrow and plan on leaving the house at 9 am to go to St Mary's hospital to get prepped for the surgery at 11. We have consulted with the best surgeon for this through our ALS doctor and they feel confident that they can do the surgery and are aware of our wishes. Eric has been tolerating the bipap well at night and will wear it during the procedure. We have also "consulted" our Great Physician in prayer and feel his peace and protection guarding our hearts and minds. Please be in prayer for continued peace, no anxiety as Eric will not be under heavy anesthesia and have more local, no breathing difficulties and a skillful, quick surgery with a speedy recovery.
We appreciate and feel your prayers already. Thanks for the e-mails, phone calls, meals, taking the kids, help with Christmas decorations, visits, prayers and all the love we feel from you all. We are so blessed!
We will try to post as soon as we are home tomorrow to give you an update.
Love,
Lori and Eric
P.S. We had a great time staying at the Amway Grand overnight with the kids!

God gives peace in the tough times

Again, we have had a week of some surprising news about Eric's ALS. 9 days ago, we got the results of our testing we did at the hospital after our clinic visit. We were getting ready to have Eric's family here for our Thanksgiving and Christmas dinner when we got the call. They told us that the ultrasound on Eric's legs came back showing no blood clots which is good. Then they went on to tell us that there is a bit of fluid in his lungs which is not good but he was given an antibiotic to treat any potential infections, but the greatest concern they had was his blood gas test results which measures the levels in his arterial blood coming away from his heart. These tests measured his CO2 levels at 52. They said that 35-45 is normal so he is retaining more CO2 than he should be. They said that he would have to wear his bipap 24/7 that weekend and then check back with them. Wow! We were about to have family over for the weekend and he had to keep his bipap that he had not been able to tolerate on all the time and not be able to communicate with anyone? We sensed the urgency in this so we asked to have Airway Oxygen come out again to help Eric tolerate the bipap. They were out that afternoon and brought another mask and adjusted the levels again and here we go. It was actually good timing to have his family, (mom, dad, sister, brother, sister in law and nieces) here to explain this to and they were able to help that weekend with sitting by Eric and suctioning when he needed it. Because of the foreign object on his face, he was producing excess saliva at least every half hour or so. I didn't think we could do it and 24/7 is just impossible, but Eric was able to get used to it and tolerate it except for at night and while eating and bathing, etc. We had a nice time with his family and I know that this is hard for them to see these changes happening, but they don't regret the time we are able to spend with eachother. Eric has actually been doing much better since implementing all of the treatments ordered. On Tuesday, the hospital bed that we have had for over a month from the VA was finally fixed so that he could sleep on the mattress. He has finally been sleeping in a bed! Praise the Lord! He has been sleeping in his wheelchair for at least six months now and his feet and calfs have been so swollen. After one day in the bed, the swelling has gone down and continues to go down. He actually tolerates the bipap all night since he has been in the bed with little to no secretions and we have been sleeping better than we have in such a long time. These new routines have been very demanding on our time and we are weighing the cost/benefit when it comes to family, friends and being used by God. The Doctors are recommending that Eric get a feeding tube put in as soon as possible, but we have been faced with the reality because of his breathing capacity at this point that doing this procedure could mean he would be sent to ICU and trached during this procedure and be put on a ventilator. We have been spending a lot of time last week getting educated on what these procedures mean and finding out what care is available to us. Eric has decided he does not wish to be on a ventilator for life support and I agreed through many tears that this would not be the way Eric would want to live his life. You can't possibly make this decision until you are faced with the reality of it. Every situation is different whether ALS or any other life threatening situation. We would never judge anyone's decision, nor use other's decisions to make our own. We feel like Eric has a lot of good life left in him and will continue to do these breathing treatments and have opted to schedule the surgery for the feeding tube for Eric on December 1st so that he can get optimal nutrition safely, simply and he will not be spending so much of his day trying to chew his meals. We are trusting God to get Eric through this surgery without a trache. He can use the bipap during the procedure and we will consult more with the Doctors to discuss our wishes and can cancel up until that date if we decide it would become too risky. Please pray with us for this surgery on December 1st! Your prayers are so powerful!
We have just shared with our kids tonight about the surgery and have talked to the kids about eternity and heaven and we all prayed for daddy to be healed and that God would continue to take care of him. We continue to pray for healing for Eric and know that our mighty God is powerful and capable of healing Eric in a moment and we also know that God is sovereign and in His will is where we want to be. We know no matter what, Eric will be delivered from ALS either here on this earth, or God will see him through every step of this disease right until He takes him home into His arms. As hard as this reality is to face, we both know that eternity in heaven is far better than anything we can experience or imagine here on this earth. The hardest thing to face is me and the kids and the loss of a daddy and husband who we love very much. The fact that those who know the Lord and have accepted him as their Savior will see Eric again is such a gift that we can treasure. We pray that Madison will accept this gift as we continue to teach her about Jesus and his sacrifice for our sins. Our purpose has not changed. We want to bring glory to God in the life that we live here on this earth. Thanks for reading as this was a long post with a heavy message, but we desire your prayers and feel so much love and support.
I know some of you will read this and say I don't know how I can help them or I need to spend time with them. God has taken care of so many of our needs and has continually brought people into our lives at the times we need them and we are so blessed. We do want to spend time with family and friends and also want to keep our time with our kids special too so the best thing to do is to send us an e-mail (lorifox@sbcglobal.net) or comment on the blog to encourage us. Our phone sometimes rings all day long and I am not always able to answer it when I am helping Eric or we are setting aside family time. Please leave a message and know that we will try to get back to you as soon as we can and we will try to reply to e-mails as much as we can too. We actually decided to take a small vacation this week over Thanksgiving break. We actually were considering taking a Disney cruise until we researched the cost and cost of flights over the holiday. Yikes! We decided that what we really need is time away with our kids and plan to stay at the Amway Grand in GR and live it up for a few days and relax.
We hope you all have a wonderful Thanksgiving and enjoy time with family and give thanks for all that we have!
Lori and Eric
“Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.”- Colossians 3:15

Difficult changes as ALS is progressing

We have been adjusting to our schedules with school and sports and life this fall. However, over the last month or so, Eric has been having problems with coughing and once and a while choking on food or excess saliva. I have been concerned about this and asked Airway Oxygen to come out to the house and check Eric's breathing. They came out last Monday and measured his forced vital capacity (FVC) and it was at 16% which is very low. His NIF measured -13. They explained that a hospital would use this measurement to see if he could be weaned off of a ventilator if he was placed on one in an emergency situation. He would need to be at least -20 to be weaned. I want to be clear that this doesn't mean he needs to go right on a ventilator at this point as he is still breathing on his own. This was hard news for us to hear and last week we had some very emotional times taking about the fact that the disease is progressing in an area we do not want to see happen. Airway gave us a lot of equipment to put into our daily routine which would be like "push-ups" for his lungs. We are now using a nebulizor with duoneb medicine and a cough assist maching twice daily and are trying to incorporate a bipap into our day and eventually throughout the night. We are doing well with the first two, but struggling with getting the bipap to be tolerable right now. We have had some serious conversations the last two weeks about a feeding tube, a trache with ventilator and even funeral arrangements at 2:00 in the morning when Eric couldn't sleep. We really haven't discussed his wishes in these areas before and as much as I didn't want to talk about it, I realized that I don't want to be faced with it if he should pass away and not know where to start. We believe this is something every couple should discuss before it is time as well as having a will and trust in place, guardians for your kids, etc. because none of us know when it will be our last day on this earth. More importantly, do you know Jesus as your Savior? It brings our whole family so much peace to know where Eric is going when he dies and that he will have a new heavenly body without ALS. We recently read about this in 2 Corinthians 5: 1-9:
Our Heavenly Dwelling
1Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 2Meanwhile we groan, longing to be clothed with our heavenly dwelling, 3because when we are clothed, we will not be found naked. 4For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. 5Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come. 6Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. 7We live by faith, not by sight. 8We are confident, I say, and would prefer to be away from the body and at home with the Lord. 9So we make it our goal to please him, whether we are at home in the body or away from it. 10For we must all appear before the judgment seat of Christ, that each one may receive what is due him for the things done while in the body, whether good or bad.

This is so encouraging to us and our goal is to please Him while we are here on this earth. We had already committed to speaking at Celebrate Recovery group at KCC the night we got this news and we knew we had to testify to what God has done in our lives in so many powerful ways. We have decided to change some of our priorities in our week too. Eric has quit some weekly appointments we have been trying since the risk and time away from family outweighed the potential benefits. We want to spend our time with family and friends and be obedient to God when he asks us to do something in his name. We want to keep being in his Word and continue to grow.

We have told Zach about the changes that are happening and not as much with Maddie as Zach is so much more aware of what is going on. Eric was talking to Zach before bed the other night last week and Zach prayed for God to send him a good friend. Zach is doing so well at school, he was named Student of the Month in October and also made the basketball team. We decided to have a bunch of 7th graders over last Friday for a party and they had a blast. There were 14 boys here and they ate pizza, played video games and went through the woods behind our house on a "scare walk" that Eric asked some people to help throw together. It was a fun night!
This week we went to the ALS Clinic at Mary Freebed and were there for 4 hours meeting with all of the disciplines there (ALS Dr, Respiratory, Dietician, social worker, Physical therapy, and a pulmonologist) We retested his breathing and it actually improved to 18% this week so the treatments may be helping. The doctor also said Eric may not have the capacity to take the tests to get an accurate read and may be breathing better the tests show. At the clinic we talked more about a feeding tube and how to go about putting one in since his breathing is lower than they like to do it at. We have to be prepared that they may need to put a trache in during that procedure if his breathing becomes compromised. We really need to be prepared to have more care in place in case this is done. We had an X-ray taken of Eric's lungs to be sure there is no infection or bronchial problems, an ultrasound on his legs for the extreme swelling, CO2 level and other bloodwork done the next day at St Mary's and are waiting for the results. Lots of big decisions to be made so we need your prayers.
We are having Eric's family over tomorrow to celebrate Thanksgiving and Christmas (yes, Christmas) together and they are spending the night so we are really looking forward to that. Maddie and Grandma put the tree up together tonight. I love decorating for Christmas so I am excited to have the decorations out early.
My family received some more bad news today. My Grandpa just discovered he has colon cancer and my sister's CA125 number went up again to 74 I believe. They are both also in process of deciding what to do from here. I keep thinking about our eternal perspective in a world that is full of sickness. Fix our eyes not on what is seen, but what is unseen, for what is seen is temporary and what is unseen is ETERNAL!! Thanks for reading our very long update, it has been a while again and so much has been happening in the last few weeks. Despite the tough changes, we are really still doing remarkably well. Thanks so much for your prayers!!
We love you all,
Lori and Eric