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

HOMEWARD BOUND...

The McCain Boys

Gene's Girls + Oliver!

Whew; what a crazy few days! With many snafus, what seemed impossible this morning is finally coming together. What usually takes 2 weeks to pull together has taken us less than a week; not without alot of drama, I might add. We are coming home tomorrow and we will have quite the entourage with us; nursing, respiratory therapy, and the home ventilator company will be coming with us!

Gene is progressing nicely. I have learned alot this week; though it all still makes me very nervous. It feels something like when you take your first baby home from the hospital--I feel like I am going to break him and do something wrong.

This has been a difficult day (seems like we have had many of those lately). Getting things into place has not been easy, but I think everything is moving along now. I thought I would completely lose it today and when I was hunting for a certain business card in my purse, I pulled out this card out instead; it said: Patient endurance is what you need now, so you will continue to do God's will. Then you will receive all that He has promised. Hebrews 10:36

Ahhh, the exact words I needed at just the right time. I was able to calm down and reminded myself that God is for us and not against us, that He is our present help in times of trouble. Shortly thereafter, things started to happen; things began to be organized for tomorrow's homecoming.

This past weekend our kids were here and we had such a nice visit; they even brought Oliver! Gene was so encouraged to see his little grandson. Oliver was not intimidated at all by the hospital stuff and looked with curiosity at Gene's new apparatus. It made us all the more anxious to be home before Christmas!

Gene continues to gain strength everyday. He is eating well; getting into his wheelchair for several hours a day, and getting very tired of hospitals and being in bed for hours upon hours. He has lost strength in his arms since he was first hospitalized, but our hope is that once we get home and back to our normal routine of exercises, he will regain the strength he has lost. He is also tired of having people hovering over him at all hours.

These pictures are from our lovely visit with our kids. If we don't give an update to you before Christmas, we want to wish you Merry Christmas. This is a very different Christmas season for us this year. While others are out shopping and going to parties, we are being reminded that for some Christmas is lonely. Some people actually spend Christmas in the hospital or have no loved ones to spend such a special day with. We are also reminded that the importance of Christmas is not in all the things we have a tendency to get caught up with.

Who, being in very nature God,

did not consider equality with God something to be grasped,

but made Himself nothing,

taking the very nature of a servant,

being made in human likeness.

And being found in appearance as a man,

He humbled Himself

and became obedient to death--

even death on a cross!

Therefore God exalted Him to the highest place

and gave Him the name that is above every name,

that at the name of Jesus

every knee should bow,

in heaven and on earth and under the earth,

and every tongue confess that Jesus Christ is Lord,

to the glory of God the Father.

Philippians 2:6-11

Merry Christmas,

Michele and Gene

THE JOURNEY TOWARDS HOME...

Look how handsome!

Making a face for his daughter-in-law; right Meredith?

Gene trying to freak me out; he is always doing that! His way of making light of the situation.

Hi Everyone,

Well, now I know why they call it rehab! We have been pretty much full speed ahead ever since we arrived here on Tuesday about noon. We had hoped to leave Scripps Encinitas on Monday afternoon, but it got to be too late in the day. Secretly, I was relieved; the ICU felt like a safe cocoon where Gene was very well cared for and watched like a hawk. I knew things would change. Saying goodbye to all of the ICU staff was like leaving a family--we all hugged, and cried, as we needed to continue on in our journey. We are so grateful for the loving and aggressive care that Gene received in ICU.

They loaded Gene up in the critical care ambulance and I went ahead in my car--I cried all the way there. The first day at Continental was a little disconcerting and left me feeling that I had made the wrong choice. It was kind of a fiasco getting Gene settled; he was extremely uncomfortable and a little anxious with all that was going on. Things did not get any better right away, in fact went from chaotic to just down right frustrating. The first bed they had him in was too uncomfortable for someone that is unable to turn themselves, so they were kind enough to bring in a special air mattress bed--the only problem was that the controls did not work and in fact when we were all adjusting him, collapsed and fell to the floor with Gene in it! Everyone in the room about jumped out of their skin, including Gene. After we finally got that straightened out his new doctor walked in. I am embarrassed to tell you my first impression of her! She looks like a woman wrestler, or a rough and tumble soccer mom! I could not believe she would be Gene's doctor--she has actually turned out to be wonderful!

The funniest thing happened in the middle of the first night. Gene woke up to find 4 large women surrounding his bed--he was so disoriented from the sleeping medication he had taken that he thought it was a gang of thugs coming to get him. What they really wanted was to reposition him in bed. I am still laughing as I am writing this! I don't think Gene will ever forget it--I slept through it. Our son brought a nice twin bed from home and set it up for me in Gene's room so that I could sleep close by, but I slept through the gang encounter--what a great caregiver I am!

Wednesday was spent trying to get Gene settled and our trying to let the staff know how motivated we are to get Gene home. When we met with the doctor she began a fast paced process of making everything happen. Thursday was a literal whirlwind of activity. One of the things they did was to put a tube that had a camera on it down Gene's nose so that they could actually see how well he swallows. Being able to eat with a trache in place is a little different than normal eating. Gene did well and he was cleared to start on regular food after not having solid food for over a week! He had his first lunch and then dinner; he had all 3 meals today!

Our doctor is working with us to try to get Gene released on Tuesday--much faster than we first expected, but very welcome so that we could spend Christmas at home instead of a rehab hospital! However, there is so much to do in order to make that happen.

Gene is on the hospital's ventilator, but our new home ventilator was delivered yesterday and Gene was able to try it out with it on the back of his wheelchair and got to travel around the hospital for a short time; it isn't much bigger than a laptop computer--and weighs only 13.5 pounds! They supply a backup ventilator and all the other equipment that you need when you are on a vent.

We need to have home health and tube feedings set up, so we met with the home health agency that will be providing our home nurses. We also met with a company called Dynovox, which makes special computer communicative devices. Gene is not able to talk all of the time--I can explain that a different time, but the communicative device is an amazing computer. Gene can speak by either looking with his eye or a special sensing device that is on his forehead. All he has to do is point his head or look with his eye at the letters, words or phrases that he wants to say and the computer will be able to speak for him.

When we go home on Tuesday, we need to have all of these things in place. Going with us will be the home health agency and the ventilator company. I am a little nervous about how this will all work. It will be a little scary to care for him, but we want to go home. I will not miss the drama, the lights, and all the alarms going off in every direction.

I keep telling Gene how proud I am of him--he is working so hard to get better; he is amazing. He is fast asleep right now and that is where I hope to be in a few minutes. I just wanted to let all of you know that we appreciate your kindnesses, your prayers, and the fact that you care about what is happening to us; thank you.

I thought we would be able to entertain visitors here, but the activity is just too crazy. This weekend will be spent learning all the details of trache care and the care of Gene on the vent and visiting our kids.

Good night,

Michele writing for Gene

MOVING FORWARD...

Monday afternoon--speaking valve in and smiling at the girls in his room! Even with a Passey-Muir valve, Gene's sense of humor is intact. He was cracking jokes with all of us and thanking all the "girls" for taking such good care for him.

Sunday--Even after a bad couple of days Gene was ready for a challenge. With all kinds of tubes everywhere he enjoyed sitting in his own wheelchair to watch some TV! It's not as bad as it looks.

Good news; problems are resolving, the path is smoothing out! Gene is doing better! His heart rate has returned to normal and after even more testing, it was determined that his heart is absolutely fine. His tummy issues are resolving and they have started to increase his nutritional flow into his g-j tube. The tube in his nose is scheduled to be removed in a few hours, if things continue to get better. His stitches in his trache were removed this morning. In fact, the least of Gene's problems have had to do with his actual trache surgery. All of this progress is very good news.

The very good news is that everything started to improve yesterday. His brother came to visit him and they watched a little football together--always a good thing! We were also able to transfer Gene out of his bed and into his wheelchair where he sat for 2 hours. It was quite a production getting him moved, but totally worth it. I took a picture of him, as you can see.

Also, we are making plans to move Gene. We have chosen a hospital called Continental Rehabilitation Hospital. It is in Hillcrest and my daughter and I liked it very much. I have heard conflicting reports about when we will be moved. They have told us that the move will either take place this afternoon or sometime tomorrow. I will let everyone know.

I know that perhaps you may think Gene looks terrible in these pictures, especially if you are used to seeing him at his most handsome best. To be honest, I doubt I would want my picture taken if I were in the same situation, especially if my hair wasn't done and I had no makeup on! But, we somehow believe it is important that others see what is happening to Gene up close and in doing so, perhaps, they may find encouragement in the midst of their own suffering. These pictures actually represent a good thing--progress and hope; if you could have seen him Friday and Saturday, you would know what I mean. God has been gracious to us.

We want so much to thank you for your prayers, love, encouragement, and concern for us.

Please be encouraged...

I will lead the blind by ways they have not known,

along unfamiliar paths I will guide them;

I will turn the darkness into light before them

and make the rough places smooth.

These are the things I will do;

I will not forsake them.

Isaiah 42:16

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

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

UPDATE...

Oliver bringing Grandpa flowers!

Hi Everyone,



We are taking a break from our usual format of blogging because we want to post a quick update and to let all of you know what is happening in our lives. The past few weeks have been very busy and challenging for us. Gene's breathing capacity has diminished significantly and to make a long story short, we have decided to have a tracheotomy. We have chosen a surgeon and the surgery is scheduled for tomorrow, December 9th. The trache will allow Gene to be completely supported by the ventilator; he will no longer have to labor for each breath. This will be a good thing, because Gene expends a great amount of energy with every breath, even though he is using non-invasive ventilation 24/7. He will be in the hospital for a few days so that he can be observed and so that I can learn how to care for his trache and vent. We will also be lining up nursing care that will begin helping us in our home. Please pray for us; pray especially that Gene recovers quickly and that he will be protected from infection. Pray that we learn to adjust to this big change in our lives. Gene and I strongly believe in the sovereignty and providence of a loving God and we rejoice in Him, even in the midst of our affliction.



On another note, Gene has been seeing a physical therapist that comes to our home and works with Gene. This has been very beneficial and is helping Gene to maintain what strength he has and to actually see some improvement in the muscles that still function.

This is the day the LORD has made;

let us rejoice and be glad in it!

Psalm 118:22

We will keep you posted!

Gene and Michele