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