Rob Fouts

Rob passed away peacefully last night (Friday, March 4th, 2011) just after 10pm.  He is finally at rest and will have no more suffering, and we are thankful for that.  His funeral will be Monday at 11am at Cool Spring Baptist Church with interment in the church cemetery afterwards.  There will be a luncheon provided afterwards if you have time to stay.  We will have a time of visitation with the family Sunday afternoon from 2 – 4pm at Bliley’s funeral home on Augusta and Cutshaw Avenues in Richmond.  It is near 195 (downtown expressway) and Broad Street.

Laurie

Precious in the sight of the LORD is the death of his saints.
Psalm 116:15

Rob is resting well tonight at Stratford Hall in Lakeside, room 710.  They are keeping him comfortable on the meds and doing a good job of that so far.  He can have visitors but it should be brief.  He can hear but cannot follow you with his eyes anymore.  We’re pretty tired and it was weird to come home to an empty house tonight for the first time in a couple years.

Laurie

Hello, I wanted to let you all know that we have yet another change.  Rob will be going to a local nursing home sometime tomorrow.  He will be in the Lakeside area, only a few blocks from our old house.  He couldn’t go there before because he was still on the vent, but they will take him with only the trach.  At least he will be able to have visits most any time.  I’ll let you know the exact location and room # once we get him settled.

We’re all trying to deal with this and of course Rob’s not too thrilled with the idea.  We had hoped we could care for him here at home, but there are just too many problems that we can’t tackle here.  Please pray for us all with another transition that is going to be hard to get used to.  We have been grateful to have more time with Rob, but we wish it were all simpler.  Please pray for our parents and also our kids.

Laurie

Can’t believe it’s Saturday afternoon already. Just got up and had lunch.  Rob is still resting and responsive.  Thanks so much for all the messages and prayers; we still have a (relatively) long road to travel….  He has enjoyed hearing from you and is very touched by the memories.  Rob’s dad is helping by printing them off to keep in a folder for the kids and me for the future.  Please keep praying; we can feel them!

Laurie

Hello again, I have a message that Rob painstakingly typed out with his mom’s help over several days:

Dear Family and Friends,
This is Rob and this will be the last time you will hear from me.  Well, let’s take a look at what ALS has done to my body.  I cannot move my arms, legs, or head.  I cannot move anything but I feel everything.  I cannot use my communication device (with my eyes).  Well, there is the real truth of what ALS does to your life.  This is no way to live.  I will not be with you but for a few more days.  I want to sincerely thank you for your time, treasure, and talent.  God has shown his glory to me through you.  I cannot describe how much I appreciate all your help for my family.

(Rob also asked me to include his favorite quote from as far back as I’ve known him.  It is from the letter found on a soldier who perished in the Battle of Cold Harbor, which follows below):

I asked God for strength, that I might achieve.
I was made weak, that I might learn humbly to obey.
I asked for health, that I might do great things.
I was given infirmity, that I might do better things.
I asked for riches, that I might be happy.
I was given poverty, that I might be wise.
I asked for power, that I might have the praise of men.
I was given weakness, that I might feel the need of God.
I asked for things, that I might enjoy life.
I was given life, that I might enjoy all things.
I got nothing I asked for, but everything I had hoped for.
Almost despite myself, my unspoken prayers were answered.
I am, among all men, most richly blessed.

Hello, as many of you asked, we wanted to let you know that Rob went off the vent this morning and is on comfort meds to help relax his body and breathing.  All of our families are here to be a support and we ask for your prayers.  We just got the kids home from school and they have been able to see him, too.  We will keep you posted as best we can.

Laurie

Good evening, we wanted to let you know Rob has not had an emergency but is at the hospital for a planned short stay.  We had discussed having him go for a respite at a nursing/convalescent center, but there isn’t one in Richmond any more.  So hospice worked it out where Henrico Doctors hospital has a unit that can take people who need vent care.  We have 2 other goals while he is there:  he hasn’t been sleeping worth anything for a quite a long time and he is carrying too much fluid like I mentioned last time.  They were able to weigh him on the bed, and we were very surprised to find that he’s up 30 pounds from the last time he was weighed, so it’s all fluid.  I had no idea it was that much, making this hospital visit right on time.

I’ll keep you posted on whatever progress they make and how he’s doing.  He’s definitely not happy to be there, but he was mildly happy to find that his room has a VCR!  This is the end of a long day for us; it started at 3am when his vent malfunctioned (even though it was just sent off and returned from servicing a couple weeks back), and we had to pull the backup vent and get him on that.  Then this morning I called the respiratory company to have them come out.  They come out, drop off another and take ours away, then the nurse goes to use it, and it is making the same funny noise as the other one!  We call them to come back again, the respiratory therapist checks it all over and then finds that the machine had sucked up his vinyl glove through one of the intake tubes after he took it off!  We all got a good laugh out of that!  What are the odds????

Anyway, for those of you who live close by, I had planned to let you know about the ambulance transfer, but we thought it was going to be tomorrow.  We got a phone call and then had 3 hours to get him and everything all ready.  So, sorry to worry you seeing the ambulance coming.

Laurie

Good evening!  We’ve had a full but fun weekend.  Rob had visitors Friday afternoon, and 3 separate times on Saturday, so that was a lot of fun.  I went to Jacob’s Court of Honor with the Scouts this evening and saw him get about 6 merit badges, so that’s cool.  This week I am the parent helper with Savannah’s troop and their cooking badge, so we’ll have another potluck to go to on Wednesday.  The kids’ birthdays are on Friday: Jacob turns 12 and Savannah turns 10!  I only hope that we have no more weather problems to mess with their school schedules; that has been a huge juggling act with all the missed days and early release days.

We had a family meeting last week with hospice to discuss some late stage issues and things to think about with Rob’s care.  We’re adding in a few more precautions to try to keep him free from infection.  Everybody is using gloves more, even when his dad comes over to shave him, he’s wearing gloves now since he’s close to the trach site.  We are using a new process with the water we use to clear the suction tube and are pouring a little at a time and then throwing it out before the next use.  Otherwise it’s like recontaminating with the same gunk.  He just can’t fight off infections like before, and he is developing a resistance to the antibiotics, so that’s not good.

Also, his body has reached the point where he can’t handle as much nutrition and fluid, so the doc has cut back his diet by 1 can of Osmolite per day.  Even though we were always fighting the battle of getting more calories in him, we have reached the tipping point where more calories and bulk is more than his body can handle, so it has to be cut back.  They told us that too much fluid is down in his feet to the point that he has ‘pitting’ in his feet (if you push down, your finger dent remains longer than normal).  The fluid can also back up into his lungs and also is taking up too much space in his abdomen so that it puts increased pressure on his heart and can cause congestive heart failure if not addressed.  Of course Rob still is trying to come up with a plan to have coffee, Mountain Dew, and Gatorade throughout the day, so I had to be bad cop and tell him the goal is fluid REDUCED, not just substituted for something else!    I’m sure you know how well that’s going to go over!

There are some other signs we’re noticing of the continual slide.  He’s pretty much on the vent all the time except for when he’s transferred to another spot or bathing.  He sleeps more during the day than before and can sleep through the racket of afterschool stuff and dinner prep with all the hollering and clanking that goes with it!  His eyes are less reliable with looking left and right for yes and no.  Sometimes it appears he wants to move them and can’t, and sometimes there’s a few seconds of delay before they move.  Based on all that, the Erica is practically impossible to use.  He has a little more droop of one eyelid, but sometimes neither one cooperates.  He’ll try and try, but there are days when he can’t calibrate all day.  And if he gets a successful calibration, he can’t do a whole lot with it, even on the pre-typed phrases page.  Every now and then he’ll have a good day and can do a little more, but it’s very frustrating on the whole.

As for prayers, please keep us all in your prayers, from Rob’s parents and my parents who constantly step in to help us with A to Z, and they really don’t get the time they need to recuperate.  For the kids who are really at loose ends right now.  Our separation from Rob is more pronounced and they are suffering with the strain of that.  Anybody can take stuff for a short period of time, but for the kids to see him like this for 2 1/2 years is painful.  They understand, but don’t understand why he can’t communicate with us.  Day after day of ‘what if’ is taking a heavy toll.  Its gotten worse now that he can’t track them with his eyes and he can’t move his head from side to side. And also pray that their birthdays can be held uneventful.   And for me, who is just tired beyond belief.  I did get my respite last weekend and slept for 14 hours overnight, read for 2 hours, and then slept again for 2 more.  Please pray for me as I continue to try to adjust to this fragmented life with so many details always waiting to be taken care of, and there’s really not enough of me to go around at this point.

Finally, thank you all for your support and your well wishes and encouragement.  Without this army that you all compose, we could not have gotten nearly this far.  A lot of our providers say how amazed they are at the care Rob has gotten and how we take care of everything at home, and I tell them every time, “you wouldn’t believe the HUGE amount of people, here, across the state, and even in other states who are aware of us and our struggles and have pitched in in so many ways for over 2 years and are always praying!”  Have a good week,

Laurie

Good morning, just a somewhat short note to catch up.  I will be having a respite weekend but will be staying in town.  It helps a lot to catch up on my sleep and step away from all the responsibilities of home.  Rob is still holding his own.  No infections right now and his lungs sound more clear than usual.  He’s been sleeping pretty well the last few nights; it helps that his lungs are needing less suctioning so he can sleep.

The kids are doing as well as can be expected, but they are really hurting.  Please pray for them to somehow understand that Rob still loves them even though he can’t express it.  They miss his playfulness and involvement terribly.

Well, time to start my day.  Please also pray for our nursing situation to improve.  We only have one nurse from the medicaid agency and everything else is out of pocket.  We’re thankful that the hospice situation seems to have settled down and we have enough supplies for Rob.  Please pray for me to have the stamina and the concentration to do what needs to be done, and to recharge myself this weekend so I can do what is needed here and find some things to give me a good laugh, too!

I am planning to have 2 mini cooking days in February, one on Sunday afternoon on the 13th, and one on Saturday the 26th.  Both will be 2 – 4pm unless some other time works better for people.  I’ll try to pull 5 recipes for each day.  Let me know if you want to do this.

Thanks,

Laurie

A few updates – Rob finally appears to be getting over this last trach infection that lasted and lasted.  We were getting very worried because he seems to be building up a resistance to some of the antibiotics.  He did have his monthly trach change yesterday, and that went well.  Rob also did well on the trip last week to UVA for the clinical trial.  He stayed on the vent for the drive up and back, and it really helped him not get so worn out.  We had one of our nurses leave at the end of December, and her replacement has already gotten the boot by Rob.  I think the kicker was when the nurse fell asleep for the 2nd time during the shift…..

Anyway, we had a good New Year’s.  We weren’t going to stay up to watch the ball drop, but we were engrossed in a good movie and had fun with that.  Rob was all but thrilled with the Tech game at the Orange Bowl, very disappointing.  We’ve been keeping him in a lot lately due to the extreme cold.  The dry cold air is really hard on him.  Overall he’s in pretty good spirits, but again, each chunk of time that this goes on takes a toll on his quality of life.  He still enjoys visitors and watching movies though, so let us know if you want to stop by.  The Erica does not work very well for him at all these days, and he mostly relies on the phrase buttons that are pre-typed to get his point across.

As for me and the kids, we are trying to hold the fort.  I am going to the chiropractor regularly to get a jump on the damage to my back from the lifting and the stress.  Jacob has had a lot of things to go to between Scouts and different meetings to get ready for middle school next year.  Savannah will be doing a lot this winter with the Girl Scouts, and her cookie sales will start this week.  She and I have 3 more weeks on the 3 x per day ear piercing cleaning and will be glad to be done with that.  They are both excited about planning what they want to do for their birthdays next month.  They’ll be 12 (J) and 10 (S).  Hard to believe.

One other note – I’ve lost a lot of email addresses when my info was moved from my old pc to the new laptop.  If you and I email each other, please shoot me a test email now so I can add you back to my contact list.  And for future planning, I am looking at the possibility of doing 3 or 4 small cooking days.  Maybe having 3 or 4 people in at a time to do 4 recipes and then repeat that process again about a month later.  That would be easier for me to manage.  I just don’t have the stamina to even help out over several hours.  I’ll try to plot out some possible dates, and then if you’re interested, let me know and I’ll sign you up.

And thanks again to everybody for your help and support.  I am never sure if I have sent a note to thank people for different things, so please know how much it means to us.  Please keep us in your prayers for me to have enough time one on one with each kid and with Rob, along with time for my own respite.  Please pray for comfort for Rob in daily living, repair for my back, and stamina for our parents who are constantly helping.  Please pray for the kids to have some fun times living in the moment when they can forget the complexities we call normal.

Laurie