How is Gene?

"For I know the plans I have for you", says the Lord. "They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11

Hi Everyone,

I know that many people are wondering how Gene is and I have received too many emails to be able to answer each one individually; please forgive the impersonal nature with which I am giving information. We are so appreciative of your emails, prayers, cards, encouragement and your sincere concern. This is the first time I have been able to get on the Internet since Gene's surgery. I now have Internet access in Gene's ICU room and while he is resting quietly, I thought I should write a quick entry to let everyone know how he is doing.

Day #1: Tuesday morning we arrived early at the hospital and of course Gene was joking with his nurses as we waited for his surgery. The anticipation was overwhelming and stressful. Our daughter accompanied us and a couple of fantastic friends were here waiting here for us. We were also greeted in the hall by a couple of our pastors and it was such an encouragement to see them and to have them pray for Gene.

Gene came through the surgery well. When Katy and I were escorted into the ICU to see Gene minutes after the surgery, he had a huge grin on his face and we all shed a few tears. He was very peaceful and the ventilator was doing its job. They said he would sleep alot the first day; he was wide awake the whole day! The first day wasn't so bad.

Day #2: Learning to adjust to a tube in your neck that is attached to your source of breath is a very big adjustment for someone to make. I will never look at anyone that has a trache the same. The second day was a bit rougher than the first. I am sure that you do not want to hear all the details about secretions and suctioning and stuff like that, but it is a different experience to say the least.

On the second morning Gene was scheduled for what is called a PEG tube. A PEG tube is feeding tube that is inserted through an endoscopic procedure, however, they were unable to visualize the correct position and could not continue. So they had to put it off until the next day and use a different procedure. Most ALS patients end up needing a feeding tube because they are no longer able to swallow safely or, as is the case with Gene, his arms are too weak to bring food up to his mouth and he doesn't eat enough to maintain adequate nutrition. He will still be able to eat food with the trache, but he needs an additional nutritional source.

A very bright spot in the day was when the Speech Pathologist came to test Gene's ability to swallow and to teach him how to use a Passey-Muir valve, a special valve attached to his trache so that he could still talk. It worked and in fact the quality of his voice was much better than everyone anticipated! It was fun to have our kids come to visit and for Gene to be able to actually talk to them--they were amazed! He sounds a little bit like Christopher Reeve, but it is still Gene's wonderful voice!

Day #3 Last night wasn't such a great night. We haven't slept much and Gene was bothered by the increase in secretions and had a couple of bouts of difficulty--feeling like he was choking and not able to breathe. Of course, you can imagine the sense of anxiety and panic that it must feel like to depend on a machine for your breathing. They also had put a tube into his nose that travels down into his stomach to prepare him for the next feeding tube procedure. Not only does Gene have a trache tube in his throat, but a naso-gastric tube as well; not much fun. But, the feeding tube procedure was successful today! Gene has had moderate pain from the feeding tube site and hardly any pain from the trache. They have moved him onto a special bed that rotates the pressure on his body because he is unable to change positions--this has been helpful today.

Gene will be in the ICU for a few more days and we are making the plans for what will happen when he is discharged, when I have more information I will write again. Unfortunately, in the ICU visitors are limited to immediate family and pastors, however, it is such an encouragement to Gene when I tell him about everyone that has sent their love and prayers.

Until next time...

All our love,

Michele and Gene