PIP and PEEP!

Finally home!

Hi Everyone,

Happy New Year! After two long weeks, Gene came home from the hospital on December 23rd. Sorry to take so long with an update, but there has not been a free moment since coming home. Living with a trach and vent is an extreme measure and a very time consuming venture; but how wonderful to be home! Gene is doing well.

Our days are filled with all the many aspects of Gene's care and the steady flow of health agencies that are working with us. We are learning to adjust to the intricacies of home ventilation. A few weeks ago we would have assumed that PIP and PEEP were the names of little feathered characters in a children's book, but PIP and PEEP are settings that tell us if all is well with Gene's ventilator. I am learning to monitor all of the settings on Gene's vent that tell me if his breathing is normal and comfortable.

There is a lot of effort that goes into taking care of someone on a ventilator. I am sort of glad that I was somewhat naive to the amount of care that goes into taking care of Gene; I would have been freaked out. We had a nurse stay with us the first night, but now we have a nurse with us 6 days a week for 8 hours during the day. Even with that, taking care of Gene is a two person job. When someone is on a vent, they cannot be left alone and even with the nurse, we are consumed by all of the activities that are required to get through a day. I am told that things will get easier as we establish our routine and as I get more comfortable with the ventilator.

Okay, if you are squeamish you might want to skip this next part. For those that want to really know how Gene is doing and are curious about life with a trach and vent, here is a short version of what is involved:

Taking care of someone on a vent is not for the faint hearted. Someone with a trach is unable to cough or clear their own secretions; they must be removed by suctioning.--this is done several times a day. There is also a dressing that is always around the neck to absorb any secretions that accumulate around the stoma (the hole in the neck) and it must be changed at least twice during the day--I change Gene's three times a day because I am a neat freak. There is an inner cannula in Gene's neck that fits inside of his trach; this is changed every two days--this is still hard for me, but I am learning. We have 2 ventilators; one by his bed, the other on his wheelchair. All of the tubing and filters on both vents needs to be changed every week. We have lithium batteries and backup batteries, 3 ambu bags for emergencies, and replacement supplies that fill our bedroom. Gene is also receiving supplemental tube feedings through his stomach throughout the night while he is sleeping. Transferring between the bed and wheelchair with the vent is a little tricky, but we are getting the hang of it.

We are told that there is life after receiving a trach, though it takes time to adjust. We actually were able to attend church on Sunday. It was awesome to see friends in a normal setting.

Respiratory failure and infection are the leading causes of death for ALS patients. Many ALS sufferers choose not to have invasive ventilation because they believe the quality of life is too poor. For us, choosing invasive ventilation was a scary prospect but an easy decision; we believe Gene has much to live for.

Now choose life, so that you and your children may live and that you may love the LORD your God, listen to His voice, and hold fast to Him. For the LORD is your life...For to me, to live is Christ and to die is gain.

Deuteronomy 30:19,20 and Philippians 1:21

Choosing life,
Gene and Michele