HELP The Walk To Defeat ALS - THIS SUNDAY

Very good friend Janelle has put together a team for this Sunday's Walk to Defeat ALS. She is looking for walking partners and/or donors. See her page here:

Fighting For Frances

In Janelle's own words:

Hello family and friends of The Adams!
We are trying to get a team together in honor of Frances for the 'Walk to defeat ALS' in Portland on Sunday September 26th. There is no fee to walk, you can just show up the day of the walk, or you can register and get a t-shirt (still free). For anyone interested please email me at Duckydelaney@ A OH LLLL.com (Yes, you know that should be "aol"). If you email me, please type in 'Walking for Frances' in the subject line, so the emails don't get sent to my spam folder. Also, for anyone interested if you have a catchy team name idea...we don't have one yet! Use your creativity! :) Thanks much!! Jenelle Delaney

Home

Our family is all back together again. Things are stressful and a huge mess. But we are home.

A Life Lost

The life of another PALS (Person w ALS) was taken from him last night.

Steve was a great inspiration to us even though we never knew him personally. His perserverence as well as his dedication to making things work have given Frances and I (and many others) the ability/will/example to make things happen.

Please pray for his family as they process his loss.

To remember Steve, here is the Oregonian article from 2009.
Oregonian article about Steve Sall -
http://www.oregonlive.com/education/index.ssf/2009/04/with_math_tutor_steve_sall_dis.html

Oregonian video about Steve Sall –
http://videos.oregonlive.com/oregonian/2009/04/with_math_tutor_discovers_mean.html

Monday Update

Wow, where to begin?

Saturday morning daddy came into the room to a scene that we didn't want to see. From his facebook that day:

"Not a good morning. Came into Frances' room to the crowd and bussle of working a code. Took 45 minutes and major interventions to get her "back.". More later...

They had moved her and a mucous plug lodged/dislodged in exactly the wrong place. Her oxygen saturations were in the 20s (75%+ is necessary for life.). She was off the ventilator and being bagged by hand. All the suctioning in the world couldn't improve things. Had to bring in a camera to guide the suctioning into her lungs. Once they finally found the blockage and got it out we tried putting her back on the vent and it wouldn't work. We had to go find a new vent.

Had she been at home this could have been disasterous. For the first time in a while i thought we might be close to a "no more" decision."

From that point on things have steadily improved but mommy (and daddy) have been a bit more scared for everything little thing.

Saturday night mommy had improved enough that daddy was comfortable leaving her in the hands of Grandma M to come take the girls to church. Grandma A had taken the girls out shopping for school clothes and daddy and Jenny picked them up and went to church for the first time in a while. It was difficult for daddy being there without mommy. Instead of absorbing the worship and praising back out loud, all daddy could do is just sit and absorb. When he tried to sing praises all that came out was tears.

Sunday and then today have seen even more improvement and the ventilator that mommy is to go home on has been delivered to the hospital and set up. Tomorrow (Tuesday) morning she will go onto that vent to try it out. Because the home vent doesn't have wireless alarms to the nurses' desk somebody is going to have to be in mommy's room 100% of the time in case an alarm goes off. Likewise, somebody will have to be at home with her 100% of the time when we do go home. As long as mommy can get to her alarm they won't have to be in the room with her but do need to be close.

Assuming all goes well over the next 36 hours, we could be going home on Wednesday. This is a little longer than we wanted to be at the hospital but even with the problems mommy has been having is still a bit faster than normal.

Please pray for continued stabilization and the strength to go home. Please pray for knowledge and expertise on the part of the medical staff. Finally, please pray for support at home when we get there - it doesn't take much knowledge nor any medical training and anyone who has said they want to help can come spend a day or a night with mommy.

Watch Out...

...Mommy is on the net with her speech device. Can't type much but can browse. Leave her a message here if you would like to.

Wednesday Update

Not exactly sure what to write here. Although a lot has happened we are still in much the same situation as we have been. Mommy is resting on and off, much of the time with the help of drugs. She is in a fair amount of pain most of the time but a combination of pain killers helps to keep the pain tolerable as long as we are not moving her too much.

She has been having a lot of mucous in her lungs and has required the doc going into her lungs with a camera and suction tube to find the little mucous spots and suck them out. Once we do that her breathing is pretty good until they build up again. As time goes on the time between these "cleanings" is getting more and more. Right now she is still on a fair amount of oxygen supplementing her ventilator. We would like her to be off oxygen all together and just on "room air." Today she was weened down from 45% oxygen to 25%. At 25% she is just barely holding on where she needs to be right now.

Through the help of a lot of wonderful people (and a bit of encouragement from daddy) it sounds like mommy's own ventilator will be here tomorrow. Once she gets transferred over to that we accomplished one more hurdle on going home. There are going to be lots more, mostly relating to her ability to keep her lungs clean and to a slightly lesser extent our ability to prove to the doctors that we can take care of her in her condition once she goes home. But at least we are knocking out the things that ARE in our control. We could be looking at 4-5 days more (at a minimum) to a week to 10 days or more.

It's very hard for daddy to split his time between the girls at home/going to school and his number 1 girl here in the hospital. Luckily Uncle Chuck is coming to the hospital tonight so that daddy can get home to at least help the girls get off to the bus one more time this week.

A HUGE thank you to those of you that have sent financial contributions. There are no words that we can say that can truly express how wonderful that makes us feel and what a burden that helps to relieve. No words except "Thank You." They seem so small but come with so much emotion.

PS - Hospital food ain't so grand after a while :)

Reflections on Breathing

"It's like a breath of fresh air..." How many times have you said that? How many times in the last 24 hours have your breathed air in? Breathed air out? Now how many times have you thought about it? In EMS when it comes down to basics there are only three Airway, Breathing and Circulation; and 2 of those 3 relate to breathing. Without it we are dead. Breathing is at our core yet we don't think about it too often. And even less do we give God thanks for it.

Here we sit at the hospital with so much going on around us trying to keep mommy alive. A huge number of people (and an even larger number of dollars) focused on her medical treatment and it still all comes down to breathing. At this point we have been forced to go above and beyond what nature (and God?) had planned for mommy and put her on a machine to do what she can't do naturally. There is a suitcase size machine with a lot of numbers on it and a lot of tubes coming out of it right next to her bed. It's sole purpose is to breathe for her Without it she will be dead. When we choose to no longer participate in this artificial existence and remove that simple three prong plug from the wall she will be dead.

A "simple" thing like breathing that we all take for granted will be the difference between mommy being here and playing with her children, loving with her husband and sharing her beautiful smile and personality with the rest of the world. It will be breathing that takes her home to be in the waiting arms of her loving Father and will reunite her with her earthly father who was taken oh so cruelly in the same way.

How is your breathing today? Are you appreciating every breath you take in? Hopefully you will be uplifted like we have, rising to the place where taking in "a breath of fresh air" has new meaning to you. Hopefully you can take the time like we now do to breathe your next breath and say "Thank You God for that last breath." How fitting is it that as I end this post I am hearing these beautiful words played in our room:

This is the air I breathe.
This is the air I breathe.
Your Holy presence, living in me.

This is my daily breath.
This is my daily breath.
Your very word, spoken to me.

I..., I'm desperate for You...

Almost Back To "Normal"

Normal is taking on a new meaning for us. We are back in the "standard" respiratory wing. 2R29 at Providence Portland for those that are taking notes. Like when Rebekah was in the hospital, there always seems to be one room that you get more often than not - for us this is it.

Mommy got out of ICU yesterday about 5:00. We had a bit of a problem that delayed our move and has put one of the greatest nurses we have had in a bit of a scare. Please pray for her for peace goodness.

Once back in our regular room the set up began. Mommy is on a ventilator that does all of her breathing for her and continuously sends her vital statistics to the nurses desk via wireless - pretty cool. Daddy even helped get their modem working right when it was not sending one of the data streams correctly.

Last night Uncle Chuck came and "slept" in the room with mommy. Slept is obviously a euphamism for sat up next to her overnight. Although this morning when daddy came into the room Uncle Chuck was laying down asleep on top of the air conditioner - the same type that hotel rooms often have. That had to not be comfortable. Daddy slept in the van with the air mattress blown up this time. The air mattress combined with no early morning encounters with security made for a pretty good night.

This morning we set up a talking computer loaned to us by the ALS Society. Mommy is busy building phrases that she wants to be able to say to us. She can build them with letters or words just by clicking on a mouse. When her hand can't do a mouse anymore she can control the cursor and click just by moving her head - it's pretty cool. It's a Dynavox V Max for anyone who wants to look it up.

Haven't heard anything since yesterday afternoon about the girls so camp must be going okay.

Pray for a good recovery period and for strength for mommy and those taking care of her. Especially pray for our nurse friend please.

Post Surgery

Lots of stuff over the last 24 hours.

Right about noon on Friday mommy went into surgery for a tracheotomy (tube in her throat to breathe through) and to be connected to a ventilator. Surgery was short at about an hour. She did great. Right after surgery she came back to the Intensive Care Unit where we still are today. She is in a lot of pain and we are trying to keep her heavily sedated although she has been able to answer questions and is not quite "out of it."

Last night Grandma M came and stayed in the room with mommy so that daddy could go get some sleep in the van. The area that he had slept in the van in the past was an out of the way parking deck but this time he decided to move to the main parking deck to be closer to the Emergency Department entrance which is the only one that you can come into during the night. Big mistake. More traffic and more light. Solved the later by putting some jackets blocking the front windows but that drew too much attention apparently as he found himself being woken up by radios outside the van at 3:00am and then having to explain to security what he was doing there. There is some talk that there may be some room somewhere here in the hospita that daddy can get some real sleep and maybe do a little work while we are here - we have a nurse and a respiratory therapist right now that is pushing for us.

The girls are on their way to Candlelighter's Family Camp. A year ago Sarah "married" Alex and they took their honeymoon on a golf cart to Sacramento. This year Alex's family was gracious enough to come pick up our van and take our girls and their two kids all to camp. We will miss being there with the girls (and seeing how the camp turns out as mommy and daddy were both on the comittee who put the camp together) but we are glad that the girls get to go.

Where we go from here today is up in the air. We may stay in ICU or we may go back to her main room on the respiratory ward. We will be in the hospital 7-10 days so that the tube can heal enough to be taken care of at home. When she comes home she will have to be on a ventilator 24/7. There is a chance that she will be able to talk a little bit by moving some air around the tube over her vocal cords but that is not for sure yet. We were not counting on this at all so it is a pleasant surprise that there is at least a chance.

Having someone with mommy at the hospital (days and nights) so that Daddy can be home for some work and to get the girls off for their first week of school is our biggest need right now. Please pray for that and if you may be in a position to be able to help with that please give Nancy (our Volunteer Coordinator) a call or email: 5o3-648-34 Seven Six, or njbmiller AT GEEEEMail.com

Emails are great as are comments here (or on daddy's facebook: search for adamsesq @ that yah... place.com) but visitors are not so much right now.

Surgery Today - Probably

We have not spoken with any doctors yet but the messages from the doctors through the nurses is that surgery is going to happen "some time today."

We still need to wait and talk with the ENT who will actually do the surgery until we know any details. But what we do know generally is that the girls will definitely be going to school all next week without mommy home. There are people at the house with them but we will also be needing some additional help there and/or to stay with mommy in the hospital. Please call Nancy, our volunteer coordinator at 5o3-648-34 Seven Six, or email her at njbmiller AT GEEEEMail.com

Please pray for peace and a good surgery. Mommy is really having a hard time knowing that she only has a matter of hours to be able to breath/speak normally ever again.

At the hospital - again.

Ok, here we are again. We are trying to get mommy's tracheotomy put in and have her put on a ventilator. You would think that, given that every doc/nurse we have dealt with in the last 7 days has insisted on a vent, that this would be easy. No chance.

Over 24 hours of trying to get a confirmation that we could get this done before the holiday weekend and finally we headed to the hospital after being told "everything is ready for you but we don't know if it will get done...." What the heck?

We got here around noon and got admitted. They did all the tests they needed to do to determine that mommy was okay to have the surgery - she was. But oh no, no surgeon can do it. Actually the surgeon could but won't because she is too tired having been up for 3 days and this isn't "an emergency." And we can't find out about tomorrow's schedule until tomorrow. This system sucks.

We will spend the night in the hospital tonight but if they can't get us on the schedule tomorrow it won't be until Tuesday so we'll be going home. There are lots of frustrations going on here and we won't hit you with all of them, but be praying for us. Apparently you should be praying that it doesn't become an emergency and we end up with a tired surgeon... Did we mention that this system sucks?

Short Post

with a lot behind it.


Mommy is afraid to continue trying to breathe on her own and can't do it anymore. I'm working as I type to try and arrange an admission to the hospital as early as tomorrow morning to put her on a ventilator. In many ways I'm afraid she won't come home...

Family, friends or whoever - please don't call me right now as I'm trying to pull this all together plus organize the girls and work. I'll call you when I get a chance.

Please DO pray for mommy.