BUMPS ALONG THE WAY

The Spirit of God has made me; the breath of the Almighty gives me life. Job 33:4

Well, I don't even know where to begin; it has been a very busy 72 hours. We have encountered a few rough patches along the way. I wanted to write last night, but everything was too overwhelming yesterday. Gene has had a few various obstacles in the journey to go back home; some have been minor and annoying and others more serious--

First, we were told and we planned that Gene would only be in the hospital a few days before going home. We were informed on the second day that home ventilator companies require a 2 week stay in an acute rehabilitation hospital. This was quite a blow and it was really upsetting to Gene, who thought he would be home by the weekend. The purpose of the rehab hospital is to get Gene and everyone involved in his care comfortable and familiar with his home ventilator and to train us in using the equipment and for caring for Gene. He will also be working with a speech therapist who will train him in effective use of his speaking valve, a respiratory therapist who will instruct us in the use of our new portable home ventilator, and physical/occupational therapy will be helping us make the transition back home with confidence--traches and vents can be a little intimidating for most of us.

The second setback was a complication from Gene's feeding tube surgery. His digestive tract quit working and he was in excruciating pain. I'll spare you the details, but we are back in business again. Because it caused a setback, they need to rest his tummy before trying to feed him through his new tube, which is called a g-j tube. He hasn't had any nutrition since Monday.

Third, Gene also developed more mucous secretions that caused some breathing obstructions, which leads to a sense of panic and fear. Because of this and because of his tummy problems, it was decided to put off using the Passey Muir valve for a day, so that Gene could rest.

Friday morning Gene felt he just had about all he could take and he felt very discouraged. He has been put through a tremendous amount physically since Tuesday. The one bright spot of the day came when the chaplain of the hospital, who happens to be one of our pastors at church and a good friend of Gene's, came for a visit. He read to us from Mattie Stepanek's book "Heartsongs". I have heard some of these poems before, but was newly touched by the insights of this little boy that suffered greatly in his very short life. We received encouragement through the depth of wisdom as we listened with fresh ears to the words of Mattie, who was also afflicted with one of the Muscular Dystrophies.

We also had a plan to use the Passey Muir valve, but unfortunately our second experience was not very successful. The respiratory therapist was not as adept at setting the correct settings on the ventilator as our first therapist was and as a result, Gene had a very uncomfortable forceful flow of air every time he exhaled. This force of air is very uncomfortable and caused Gene to feel like he was not getting enough air to breathe. After a couple of hours, he was overly exhausted and it was decided to remove the valve and let him rest.

Today is Saturday. We had hopes of trying the Passey Muir valve today, but Gene was unable to clear enough secretions that would allow enough air to pass around the valve for effective speech. The vocal cords must have a flow of air over them or sound cannot be made.

I also had a plan to drive down to San Diego today with my daughter to visit 2 different rehab hospitals, to see which one would be best suited for Gene. While we were at the first facility, I received a call informing me that Gene was having a rapid heart beat and that he had a low grade fever. The first thing the doctors fear is a possible blood clot, due to his immobility. Gene had an ultrasound on both legs, which was negative. Because it was negative, they had to do a CAT scan to make sure he did not have a pulmonary embolism--he doesn't. He also had an EKG which showed some form of tachycardia, so they performed many tests to make sure it wasn't a heart attack or heart failure--it was not. They did find some concerns with his lungs, which leads them to believe he might possibly have an infection. They have started him on 2 antibiotics, just in case. His fever is down and he is now resting comfortably.

Because of all the setbacks, they have put off trying to feed him through his feeding tube until things settle down. We pray that will be tomorrow.

As of right now, we think that on Monday or Tuesday he will be transported to one of the rehab hospitals for one-two weeks. I will keep you posted.

Why do you complain to Him that He answers none of man's words? For God does speak--now one way, now another--though man may not perceive it.

Job 33:13-14