Monday, March 31, 2008
Tonight he slept so hard, I really think this will help him so much. He had a wonderful nurse, she was just so peaceful and made him relax. Auntie and Uncle Al were here for most of the evening. Every night (or early morning) when xray is done, he and I always set a goal for the day. Sometimes it's something as easy as staying awake for a whole hour. Well, he just set his goal for next week. He wants to be strong enough to watch NCAA championship game with a BIG Pepsi.
How's that for a goal?? He actually wrote that for the drs. to see.
We have been a little worried about him being depressed, well---he's back. He just needed some attitude adjustment time. This helped too, his cousin called and told him that she named her new baby after him. She said that if he would grow up to be half the man Will was, she would be so happy. Brought tears to my eyes and finally a smile to Will's face. Thanks Billie and Matt.
By the way, he wants to bring this nurse, Sumer, home with us when we leave. Maybe we can tempt her.
I told you that I had a special memory of Will's that one of his high school friends shared with us.
This was absolutely his best moment of all when he was in school. This came in a form of an email for Will but I convinced Jason to share it with you. Most of you will remember this.
I don't even have to tell you to keep battling or fighting, I know you don't know any other way. When I read what other people say about you, I nod in agreement and think the same thing. My first year up at Ricks, I wrote a paper for my English class. You used to have to write it in those blue books and on the back the sticker still shows it cost me 15 cents. Man this makes me sound old. It is about the only sign of higher education that I have kept other than my diplomas. But I didn't keep it because of the paper, but rather that it was about Will. I think I told Randy about the paper, but other than Mary I don't know if anyone knows that I wrote it. Every time I get of the blog, I think about Willie and this paper. It only got me an 85%, but that was because he probably gave me a 110% on the topic and a 50% on the writing. I don't think I even broke it into paragraphs. That was that crazy English teacher Fran Widners fault. I think it was around Thanksgiving and the assignment was to write about "the spirit of giving". So here it is: As the spirit of giving rises at this time of year, I think back to a time when giving was truly the best thing in life. Willie Harbison was a friend that had cystic fibrosis. He was a true friend to all and could have been thought of as a brother. Willie was like any other kid, but struggled with Cystic Fibrosis. He spend days and weeks in a hospital bed. But one thing about Willie was that he was never a quitter. He would keep you going at anything you did. He was certainly a true friend. Will was also the manger of our football team. He would have played if his health would have permitted. But as manager he was a great inspiration to have. He was one who you could sit down and talk and you knew he was listening. He was a key to our success and his giving made us a team give back more. In the middle of the season, Willie went into the hospital with a high fever. When we visited him he coughed and looked terrible. We knew it was serious and things did not look good. We saw the importance of the season dwindle and concentrated more on Willie. His health was more important and it showed as we dropped our second to last game of the season. We had given up as a team but Willie would never give up. The next week we played our rival Castleford and there was no way that Willie was going to be there. We had a terrible week of practice and we were sure the top rated team would blow us away. Before kickoff, we sat in the locker room, and in walks Willie. Still pale, but with a smile on his face. He just asked us to play hard as we could and he'd be proud. He walked out and the locker room broke out into havoc. We ripped up towels and wrote Willie on them. Before we went out, we got in a circle and prayed. No one prayed that we would play good and win, they just said thanks for giving us back Willie. We went out and instead of yelling Win, we yelled Willie. It's basically the same thing. We went on and beat Castleford and eventually the state championship. As we received the trophy, we gave it to Willie and told him it was his. We hoisted him on our shoulder and tears came to our eyes. Not that we had won, but that we had Willie. Willie is still in high school and has well lived out his expected life span. He hasn't made many trips to the hospital, and is playing varsity basketball. We gave him that state championship trophy, but he gave us love. Will, I want you to know that I do consider you as one that has had the great influence on my life. Your perseverance and courage is second to none and last night when Mindy called and said that you were not doing well, I was worried but I had the comfort in my heart. That comfort that reminds me what you are about and how you will always battle. You are in our prayers every night. I also need an address so I can send you down the inaugural Rocky Mountain Football coaches shirt. I have medium with your name on it, or if you are still retaining a little water, I can send down a XXL for the time being.
See you soon,Jason Jason Warr
Meridian High School
There is probably many people out there that remember that time. If you do, and want to add more to this by commenting, please do so. (Sue-do you remember what we did?) I was very touched by Jason's sentiment. If you know Jason, you know he isn't normally that kind of guy. Well, Jason, your secrets out. You are a good guy. Thanks for taking us back to a wonderful time (I think it was l988). If I were home I would put a picture of that on this blog but I don't have them with me.
So we need prayers for the tests to come back negative. God knows which ones. Prayers for Will to gain strength back and God's blessings on Will's friends that keep him motivated even when he doesn't want to be. We love you all.
Sunday, March 30, 2008
"Will, I remember reading this phrase once that friends are like stars, you can’t always see them, but you know they're always there. I know you have always been one of my stars, but I hope you realize that I am one of yours too. " Isn't that a beautiful way to describe friendship.
I want you all to know that you're Will's stars. He is such a blessed man to have so many friends like the ones standing behind him on this journey.
Will's day started out a little rough but got better later on. He won't be getting off the vent for a little bit yet. His lungs are still weak. His energy has gone down hill the last few days also. So the drs. are a little bit nervous about trying to let him breathe on his own yet. They are going to let him rest for a few days and we will continue to work his joints so he doesn't get too stiff when it's time to get up and move around again. He will be having tests run on Monday and Tuesday so it's good that he gets to rest this weekend.
He tried to stay up for the Louisville game last night but didn't make it. I think he's sleeping through the whole March Madness. He's going to be so mad when he finally wakes up and realizes this. :(
His Auntie and Uncle Albert came down to spend a few days with us to give us a little break. Will kind of likes his Auntie to be here. Tom was really excited to see his little brother also. I love the company. It will be good to have them here with us.
Our niece and her husband, Billie and Matt, named their new baby Coby William (notice it's named after Will) They are going to call Will later today and let him know, It's going to make him very happy.
When we look toward God, we see perfection, when we see people we see God's love. Isn't that great the way things work out.
Thank you all for your comments and emails. I am going to print them all out and make a little book for Will to be able to keep for always.
Saturday, March 29, 2008
Our good friend and now relative, Kim White, came up and surprised us. She has stayed all the time in the hospital with Will. She's our comic relief. Also, Will thinks she gives the best neck rub of all time. He was telling her how much his chest was hurting and she asked if there was anything she could do and he said "Nothing, well, maybe a neck rub." That's so funny, one doesn't have anything to do with the other. He might be milking it a little. He wasn't awake long enough to watch any of the games last night so he will have to catch up on sport center or something like that.
We feel really blessed that Will is trying so hard and I know a lot of the fight is coming from inside of him but it's also coming from your prayers and encouraging comments. Thank you (I know I say that a lot, but I don't know what else to say.)
PS Breathinsteven --I want to tell you that many people have got a hold of me and said how much they liked the words you wrote. You're very inspirational and so is your blog. Thanks for sharing so much of yourself. I can't wait to share with Will, but for now he wouldn't remember much so I will wait.
Everybody have a great, fun-filled Saturday. Play games and laugh a lot. Good days are ahead.
On Monday I am going to share an email that came my way, you don't want to miss it.
Friday, March 28, 2008
Will is doing a little better today. It's amazing what a few hours sleep can do for a body. They are still trying to get him down to ct scan on his lungs but don't feel good about moving him yet.
They kept him pretty sedated today to try to keep the pain away and to give him some more sleep. Dr. Cahill came in and said to do that for one more night and then we need to start weaning him off the vent. So it looks good that maybe tonight or tomorrow he can get off the vent and start clearing out his new lungs again. His blood gasses looked good.
We had some visitors today. Will's pediatrician, Dr. Geist, and his respiratory therapist, Jo Hawkins and her husband, Jim and daughter, Megan came up and spent an hour visiting. They knew it might be a long shot that Will would be awake to see them but he did spend some time with them. He felt bad because while they were here his vent tube slipped and needed to be put back farther in the throat. That does hurt and so he needed some more pain meds, which made him very sleepy. They came down all this way to make sure everybody was treating us well and that Will was okay.
I am going to publish a story written by a good friend of his but I will do it later. I think it speaks volumes on the love Will is getting from all over.
Steven from Chicago, thanks for the uplifting words. When Will gets more lucid, I will read it to him. It will be so good to hear from someone who has had this done.
Grandma Cherie-what you wrote was beautiful. Thank you so much.
so we are having a good night. Love to all
and hope God's blessings are upon you,
Thursday, March 27, 2008
Tom did some of his moving exercises with Will. Tom stays pretty much all his waking time up here also. We feel better when we are watching everything. It keeps the drs. on their toes also. Not that they aren't already. They are really, really good here. Will is very lucky to have a dad like Tom, not many dads could spend so much time in this little room.
We have had a lot more hits on this blog after the news show. There was one that sent me an email instead of a comment. He said something I want to share. He said, "I am amazed at the spirit of people with CF. They all teach us how life is supposed to be lived." He is married to a woman with Cf who is turning 45 in July. Doesn't that sound about right?
Then another man who has had a transplant eight years ago. He gave us such words of encouragement. I can't wait to share them with Will when he really wakes up.
God is really touching our lives in so many wonderful ways. I can't say it enough, the support we get from all of you is how we all keep going. You make us stronger with your prayers and your motivational comments. God is working overtime here. He is an awesome God.
I don't know what today will bring, I think the drs. will round this morning and decided if they just need to let him rest some more.
Oh, and our niece is having her baby boy today. What a wonderful day to have a baby. Will can't wait. Good luck Billie and Matt. We love you and can't wait to hear from you.
God Bless all of you wonderful people.
Wednesday, March 26, 2008
He had a few tests today and the results should be back this morning. I know all of you that are reading this are asking the same questions as we have. Why does this keep happening with all the fluid built up?? The drs. all ask that too. They can't seem to figure it all out. But they do keep trying. He had a little "blip" (that's not really a medical term) with his kidneys. So they did a whole battery of tests on that today. They did order a another ultra sound of his arms and legs because the swelling hasn't really come down yet. They must have been busy because they didn't come up. I'm sure they will be here this morning. His blood pressure went down again today so they had to back off his sleep medicine. He wasn't happy about that. He does have pain medicine that he takes. He would just rather sleep his time away while he's on the vent.
They have gotten his O2 needs down. He's now on 70%. We are working his joints and muscles so he's not going to be too stiff when he can start moving again. So things are moving here in the right direction.
Randy, I know this will shock you but he asks me to talk to him when he wakes up. Seriously, I had a nurse verify it so you know it was the truth. I tell him things that you share with us and anything I see out in the hallway but I usually just tell him sports stuff that I read on the internet. Our niece is expecting her baby any day now, so Will asks about that every time his eyes open. We can't wait.
Today we will pray that the vent numbers will go down or take the vent all the way off. Why not pray for it?? It could happen. The swelling needs to come down and his lungs work at their full potential.
I forgot, the news story aired today. They did a ok job. I talked a lot more about being organ donor and the good care that we are receiving here at the "U" but they didn't put it on. The cutie that was on the segment with me is Somer Love, she has CF and we have gotten to know and love her lots. She calls Will her Superhero. What a doll. Anyway she said they interviewed her and she put a lot more stuff in the segment that didn't get aired. That's too bad. She wanted to plug CF research. But for those of you that want to, you can go to this site and click on Will's picture on the right. That was him and his sister right before his surgery. Jerome Lady Tigers--you were on the news in Salt Lake City (good picture). www.kutv.com/mostpopular I don't know how long it is on that page. Hopefully you can get it. Don't look too closely at me, remember I have aged a lot these last days and I hadn't had any sleep for about 30 hours. I have already heard from other people in the Salt Lake area who has CF and thought it was a good segment. They said they will now read the blog everyday. That puts a lot of pressure on this old lady. I have a neice that teaches high school english, I want to hire her to write these for me from now on :)
Our God is with us at all times, (even at 4:30 in the morning). We feel His plan for Will is a good one. We should be turning the corner today, I bet. Your prayers are powerful. Thanks you again and again. Love to all
Tuesday, March 25, 2008
I just wanted to tell you what all the comments and emails have done for us as parents and for Will. We read them to him but he ones that have been sent today and yesterday will have to wait until he comes off of the meds. There is one particular that was sent to my email (email@example.com) today that meant so much. I know this person doesn't want to share it with everyone but JW you're pretty special. It's going to mean a lot to Will to hear what you had to say. This was way back when Will was in high school. WOW. Will is still giving people inspiration. Again, we feel very privileged to be able to call him our son.
I forgot to mention that yesterday was the one month anniversary of Will's new lungs. They are going to be so good when we get everything working the right way. I will keep everyone updated when we know anything today. Praying is the most powerful way to help right now, so thank you all for your prayers. (And the comments help us to keep Will motivated)
I hope God pours out His blessings on all of you like He has done for us.
Monday, March 24, 2008
We really feel the prayers from all over and we do get our strength from them. Thank you.
Hopefully tonight will be a pain free night and a quiet night also. He just needs to rest more. Will let you know how it goes.
Love to all, can't wait to see everyone again.
PS Andy and Curt, I can't tell you what your comments meant to all of us. Andy you are a writer because you said what was in your heart. Thank you so much. I can't wait to share with Will when he gets better. (You both made me cry, but then I seem to be a cry baby these last couple of days.) I enjoy everyones comments so much, just knowing how Will has affected everyone. Keep them coming, they inspire us. Some of the ones that are coming to my personal email are very, very touching. I wish I could share them with you all. Remember if you don't want to post them here, email them to me at firstname.lastname@example.org and I will see that I read them to Will as soon as he wakes up.
Our day wasn't that great. Will is now back on the vent (the machine that breathes through a tube down his throat) It all started in the night when he was having to work too hard to breathe so they put him on the bi-pap machine (the machine that forces air down to help you breathe). He still couldn't get his sats (saturation of oxygen) up over 85% (acceptable is over 90%). He was working too hard and then he started going down hill fast. They decided to put the vent in rather quickly and I was amazed how well Will took the news. He must have been tired. Once the vent was in, he still wasn't able to get his sats up. The drs. worked most of the afternoon on him but finally they got them (the sats) up. They had to put all the tubes that they had before back in him. they put two new IV lines in and one just to take blood out of (arterial line). His blood pressure started to drop (68/29) and so they needed new medication to get that back up to acceptable numbers. That took a few hours to get that up. So all in all, it was a long, long day.
Will is holding his own now and they are keeping him sedated . They want to run a bunch of tests, including a ct scan to see what happened but they can't do it now because he is still unstable. Hopefully they will be able to do it later this morning. This is just another bump in the road. Will reminded me right before they had to put in the vent that it's all going to be worth it.
As I sat here tonight saying my prayers for His blessings on Will, I can't forget that there is a love more powerful than a parent's love and that is God's love for Will. He must have great things in the making for Will. The trials and little "bumps" that we are going through are all in God's great plan. The hard part is being able to give it ALL over to Him. I know how hard it is to read that Will has had a set back. I said a prayer for all of you to find some peace knowing God has his hand upon Will. I hope everyone will say a prayer for Will's speedy healing and finding out what caused this. Also if you could say a prayer for Angel, she is having such a tough time being so far away while all this is happening to him. My heart hurts for her too. I will post more as we know what's happening.
God bless you all
Sunday, March 23, 2008
I am the resurrection and life. He who believeth in me, though he were dead, yet shall he live. And whosoever liveth and believeth in me, shall never die. John 11:25-26
May you always feel His love shining brightly in your life.
Have a blessed Easter.
Saturday, March 22, 2008
Anyway they wanted to do a human interest story on that but I told them I needed to plug organ donation also and they said it would be okay. So I was able to do that and the producers wanted to have Will a part of it. The cameras wanted to shoot him but they aren't allowed in ICU. So they just shot me. I know you all think that I'm not shy, but I really was. I hadn't had any good sleep the last 30 hours and I was tired. I told them they had better take anything out that made me seem like a babbling idiot. I don't know what all they put in the segment. I will see when it comes on the TV. Will's friend told us they could get a tape of it so when I get home I will share with you all, or if there is a website I can tell you what link it is.
One of the hardest questions they asked me was what made my son so special that hundreds of people checked up on him every day? I told them they didn't have enough tape on their machine for me to list all of the qualities. They said they might want to do a follow-up on Will later when he gets out of ICU and see if people are still blogging to check up on him
Will is having another quiet day. The drs. said that it must have worked something right because his lungs are a little better today. They want to keep doing that for a few more days. Just letting Will walk as much as he is able and start eating. He needs to eat about 3200 calories a day. They give him 1500 in the feeding tubes and they want him to eat the rest. He gets in about 300 calories right now. So he has a way to go. It just boggles my mind that people "have to" put on calories. I don't seem to have any trouble at all. :(
He's taken two walks today and he will take one more when I get back up to the hospital.
Tomorrow's Easter!!!!! YEA
I have some news for later, I hope. For all of you back home that are going Easter egg hunting today, have fun!!!!! The weather should be great.
Friday, March 21, 2008
As we go into the most holy of times, as I watch my son sleep and feel so bad for what he has to go through, how much harder was it for God to send his only son, knowing ahead of time the suffering that Jesus was facing. I am in awe of the love that God has for us. So enjoy your Good Friday and stop to remember that we all are loved by God and there is no greater love than that.
I will update you on what's happening with Will today. God bless
Thursday, March 20, 2008
He was really struggling by that time and the drs said there might be a possibility that he would have to go back on the vent. The respiratory dept. here at this hospital is terrific. They have become our new best friends. We had four of his favorites come up to ICU to see if they could help Will breath better. Whit, one of Will's favorites, worked on him most of the day trying to get him more comfortable. As I said before, they really care here almost as much as our old hospital does in Twin Falls.
They did the procedure and they got some plugs up but they only could open up the upper lobes. The bottom lobes on the left side were closed solid. They took an xray right after the bronch was done and it showed the lower lobes not working. So now what??? The drs are having a little meeting and seeing what they need to do. They might send him down to the cat scan place again.
They came back into the room about 6:30 and they had decided to stick a needle into the lung cavity to see if they can draw off some fluid. They did that right then but they didn't get much. The drs. were dissappointed that there wasn't more that they could get out. Then they said he could go ahead and eat. Well, needless to say, he was too tired by that time but Angel bullied him into eating some pudding. Maybe later after some rest.
I will let you all know how he does through the night.
Some added prayers are needed tonight. Thanks for all the support. God is surely working in all our lives.
God bless and I pray that He keeps smiling down upon us all.
One of our friends was telling me how he would like to leave Will a message and something fun but he felt wierd doing it where everyone can read it. It didn't even dawn on me that might be the case with a few of our friends. So what I thought I would do is publish my email account so any of you the feel that way may leave Will a message. I can read it to him. Just put on the subject line "For Will" I will read them all. That's a real big help, when we have something to read to him.
Send them to email@example.com If you have been sending him any phone messages, texts, or emails, he hasn't been looking at any of them at this time. So that will explain why he hasn't got back to you all.
Today maybe we can get a chest tube out. We have been looking forward to that for a few days now. He did take xrays this morning to see if what they have been trying to do, has helped him clear his left lung.
Angel has helped a lot with Will and his attitude. She just doesn't allow him to get down, even though he wanted out of ICU yesterday. He's back to listening to ocean sounds again. Boy, am I sleepy, it really works on me. Will's going to have a lot better day today. I think he was just trying to get Angel all worried about him, that's all.
Wednesday, March 19, 2008
Will's xray was showing some fluid built up and the drs. didn't know if it was enough to stick a needle in and draw it out or just let the body take care of it. They did an ultra sound and it didn't look too bad so they decided not to do it. Will was relieved. Then they took him down to the cat scan machine. You would not believe all the stuff it takes to move him, but they got it done. It just showed that the left lung is still a little collapsed and hasn't inflated far enough so they are going to work on that today. Maybe a chest tube will be taken out this morning.
The ICU dr. came in about midnight and said we were needed to move because they had multiple beds needed in the ICU and they "kick" the people out in order of care needed. I got all the stuff packed up. We were looking forward to going to another floor but then they came in and said they moved three other people out but Will needed to stay here for a while. We are still hoping that maybe today they will move us. It's not a bad place, everyone is so nice but they just have to check you every hour so Will doesn't get too much uninterrupted sleep. Sometimes I think he would just start really turning the corner if they give him 6 hours of sleep.
Then Angel came this afternoon. This causes a whole other set of problems for Will. She loves to bug him. He's just not finding it as humorous as he usually does. But let me tell you, it did a mom's heart good when I turned around and saw Angel rubbing Will's head because he was in so much pain. I wish I had my camera because they will both deny it later. I think they love each other. :) Angel gets to stay until Friday and she will spell Tom and I a little bit. Her new husband is such a sweetheart to give her up for a few days. They still like having each other around. Thanks, Aaron.
So today we are going to work on opening that left lung up and maybe moving onto another floor. He did stand up three times today but he is so shaky that he really isn't holding himself up yet. He needs a lot of help, but it felt good to get out of bed, even though he needs lots of pain meds afterwards. So we will work on that also.
Well, I hope all of our friends that are going through Spring Vacation are having a wonderful time. Enjoy and relax. God is working so hard to give us such great people to help take care of Will, and He has blessed us with such wonderful friends and family that continue the prayers that Will needs. Thank you and I say prayers for all of you also.
Tuesday, March 18, 2008
This is going to be a great day. Will had fun yesterday drinking and eating soft food. The herd of drs. came in about 10:30 am and was congratulating him on passing his swallow test. Then they said they only wanted him to drink 5 of those water bottles (the little ones) in 24 hours because he still has so fluid in his body. Well, he had already had 4 by then. Whoops. That didn't even count his Pepsi. He did enjoy his pudding also. So it's now all about getting the fluid off and getting his strength back. I really think Will is his own worse coach. He thinks he should be doing all this and more and then the drs. come and and tell him to slow it down and rest. He doesn't like just resting. He even tries to do leg circles in bed when he is supposed to be resting.
Speaking of coaching, Will's friend and high school coach, is coming up to see him today. Yes, he can still drive, they don't have an age limit yet. They will probably spend the time discussing Will's picks for March madness and then I will let all of you know. Will is excited.
The drs. will make their rounds and decide if Will can get one of his chest tubes out. We will see.
Today he should be able to eat more solid food. I think I need to go find an artichoke. Angel might be coming up to spend a couple of days. She's on spring break.
Hope the warm weather is coming soon. It snowed here yesterday and put about 5 inches down. It did melt by the time I left last night.
We miss all of you and love to hear from you.
Talk care and God bless
Monday, March 17, 2008
They were able to put Will on 1 1/2 liters of oxygen on a canula (the nose thing) That's a big step, people. I think we should just come on home now. The worst is over. He still can't sit up without help but the strength will come back soon now that he has pepsi running through his veins again.
I will update later.
God bless you all
Thanks for the comments. Sometimes in the middle of the night, he wakes up and he has me read them over and over again. It gives us something to talk about.
Will's day was busy on our new floor. First he had to get a pic line in. I watched that and it was fascinating. They take a ultrasound and then just find a big vein to stick it in. It's all sterile and it's like a surgery, but it's not. Anyway, they went through all the fluid that is still on him and found a good vein. They put in a couple of ports for the IVS. Then they got to take out the two ports that were in his upper thigh. They really want him to get sitting up and moving. The drs. know that will drain the fluid off the chest cavity.
So they got that done and then they tried to take out one of his chest tubes on his left side but somehow it had gotten kinked with all the other lines running around on his side. When they unkinked it, it started to drain again so they decided to keep that one in for a little while.
Then the herd of drs. made their rounds and all fit into this tiny little room. The head one, Dr. Harris, asks a bunch of questions. It reminds me of that show "Scrubs" so when they all left, Will and I laughed at some of the guys' questions. We tried to put some names from the show and match them with those drs. This family is easily entertained.
Then came the swallow test. You have to pass this test in able for them to clear you so you can start drinking and eating. Willie flunked. If it wasn't so sad for him, I would have laughed at some of the questions he asked the dr about giving him a "redo" He said he would study more for it. I guess when you have been on a vent a long time you muscles get lazy and don't want to work. Will is so thirsty and he begged her just to stay there and let him drink while she was watching. He did everything he could but get down on his knees and beg, he probably would have done that if he could have gotten out of bed. But this was one dr. that was more stubborn than Will. They don't make very many of those. So this morning he should have another test and then he will be able to start drinking.
While I was sleeping, Tom got Will up and sat in the chair. He is weaker this week than last. So they had to pick him up and put him in the chair. He got to stay there for about 45 minutes. It felt good for him to be off him back. They also took one of his feeding tubes out. He is still on 30 % oxygen and that's good. We hope to move him around more today and get him drinking. His lungs are still "wet" so he needs to cough more. I never would have thought that we would have to remind Will to cough. What a difference.
So this was a good day, positive moves forward. In a couple more days, we will be back to where we were before Will had his "setback"
Thanks everyone for your help in getting Will ready for his March Madness picks. I will let you know when we get them going. Your page was a good one Susan and Roger, thanks.
Hope all of you wear green today and just thank God of all your good luck that He has been giving you. I know I do. The luck of the Irish and all that. I think we have found a pot at the end of the rainbow. I will let you know if he gets his Pepsi today or not. I think even if he doesn't pass, he's still going to drink some.
Take care and God bless you all
Sunday, March 16, 2008
Hope you all enjoyed church and thanked God for your blessings. I think I thank Him every hour lately. We are blessed.
Saturday, March 15, 2008
Hey good news, HE'S OFF THE VENT. YEA!!!!!!!! Will feels good even though he's tired, so tired. It came out pretty easy and then there was this great smile on Will's face. The drs. that were watching were amazed that he could smile after all that pain. But he has pepsi on his mind.
So we moved up to fourth floor tonight and we were put into our new room #7, Lucky seven, right Randy. They are a lot older and smaller rooms but that's okay. They are more strict than surgical intensive care unit. They don't let people stay the night-you have to leave by 10:30 pm and can't come back until 8:30 am. So after Tom and I set them straight, one of us will be staying with Will until he's not so critical. Silly rules! We waited all day to move, they didn't have any beds. But once we were here they started the tests and then tonight-out came the vent. Thank our good Lord, I don't think Will could have stood it one more day. Now his real workout will start.
Tomorrow, they will do a swallow test and try to put in a picline so Will can get the other two iv ports out of his upper thigh area (I was going to say groin area, but I don't think Will wants me to say that on this blog :) Then he will be able to get up and walk and he's ready to do that soon.
So things are on the upswing again. While he was getting ready to get the vent out, I read him some of the blog comments. He loves them so keep them coming when you can. We miss all of you and hope we will see you soon.
This was an exhausting move on all of us, we hated to leave our wonderful friends down on second floor. They literally saved Will's life more than once. I want to do something special for them and when I was saying to them my heartfelt thanks, all they said they needed was to have us bring Will by when he gets out of the hospital. We will do that for sure and they will be surprised how he looks normally. I know this new floor will bring us new friends as well.
Will's grandma and grandpa from Boise came up to spend some time with Will. Grandma spent many hours rubbing Will's feet and head. He is going to come out of this oweing so many massages.
I will write tomorrow and let you know about our new digs.
God's blessing on all of you.
Will update later when we get moved.
He is now getting very thirsty and so we swab his mouth out with these little tiny sponges that we dip in water. Will is getting so ready to have the tube out so he can drink. He asked me to dip the sponge in pepsi and swab his mouth. Now doesn't that sound like something he would ask. I told him if he got permission I would do so, but I don't think that's going to happen.
He also has been asking about March madness. If any of you know some web sites that I can go on and read to him what team is doing what, I would appreciate it. He has his picks to fill out and he's been out of game watching for a while. I don't know where to go to get some information for him.
You don't know how your comments are lifting him up during the day. I really appreciate them and so does Will. If you don't know what to write and you feel funny about having other people read them, just write an amusing story or memory or just hi.
We will see what today brings. Thanks for all your concern.
God bless all of you and hope you have a great Saturday. Do something fun with someone you love.
Friday, March 14, 2008
Will's holding his own. All last night he worked out and exercised (all he can really move is his arms, hands and feet) but he wanted to be ready to get off the vent. He tried all day but he couldn't get his numbers up. His body was still too tired to breathe without help. Still for the rest of the day he worked and still he couldn't get off the vent. So tonight he just rested, and he thinks maybe that will work.
He was angry at himself and I reminded him that he only had surgery the day before and that sets your body back. All he told me was that he had a goal for the day and he didn't reach it. So he was dissapointed. I told him to cut himself some slack. He just wants off that vent. He hates having to tell us stuff by writing it out on a pillow. And he's ready for another pepsi. It seems like a long time ago when he had that one last week. His blood gases (that's how they check to see if he's oxygenating his blood-I think that's how they say it) are not where they should be to get off the vent today either but I'm not going to tell him. I'll let the drs. be the bad guys. Who knows, he might be able to do it later today.
The drs. did another bronchioscope to check to make sure they didn't damage the lungs yesterday during sugery and all looks well. They are going to work just fine when we get all this other stuff figured out. His new feeding tube that they placed in his intenstines yesterday clogged up so they had to put another one in today. That's not a very comfortable procedure.
He is waking up more and wanting to have us read the comments. That's the first thing he asks us for. He loves hearing from all of you. Yesterday, Molly wrote to us. She's from his basketball team. He loved hearing from her. Hopefully the other girls will start leaving messages too.
Right now he went back to sleep and he's listening to relaxation music with birds and ocean waves. It's pretty hypnotic, I keep finding myself drifting off to sleep too. I also get very reflective. I am just amazed that God made my son into the man he is. I keep learning and growing because of what Will has taught me. Parents are supposed to teach their children. Not in this case, I have learned so much about strength, perserverence and the willingness to do what you have to do to achieve your goal. His goal is to breathe. Pretty simple for you and I but he sure has to go through a lot to get that happening. He has never gotten depressed or discouraged. Just ticked off because he had to go back on the vent for a while.
God says He goes before us and makes a path to follow. Will's path might not be the one that we want for him, but it's the path that God wants for him.
Someone sent me an email today and it was a good one, I'll share--
God only gives three answers to prayers:
2) not yet
3) I have something better in mind
How true is that. So keep sending prayers and see what answer we get. They are so powerful.
Hopefully I will be able to have some good news later. Will just told me he has a good, good feeling about today.
Thursday, March 13, 2008
He's been up three times tonight doing his workout. The nurses are amazed how much he can do already. He can't stand or sit because he's got two iv's in his legs because he's so swollen they can't find another place to put them. But the way he's going to start going up hill, they probably won't be in there long. They can't put it back in his neck because he still has quite a big clot there. We don't want to mess with that.
I know everyone is wondering how Will is bleeding into his chest. The drs aren't too sure-6 drs. and 6 different ideas. But the one that makes the most sense is that when they found the blood clot in his neck they started the heparin drip to dissolve it. Standard protocol. But even though Will was ten days out from his operation, he must have still been bleeding in his chest where they had to take his old lungs out. When they introduced the heparin, he started to bleed into his chest cavity. They could drain most of it out with the big tubes they had in, but some pooled up between his ribs and lungs and became too big of clots to come out with the drain. That's why they had to go back in and suction them out. Another idea was maybe Will is allergic to heparin. They sent some of his blood out to check that idea out.
Either way, he needs to go back on the heparin (I know, crazy huh) because of the blood clot in his neck. It's not something they are willing to ignore. They are waiting until later today to start. I will keep you updated.
Good news though, He doesn't have to go on dialysis. (spelling again??) The big renal drs. came in and feel that even though there is more swelling that the past week, the kidneys should handle it. Yea
So today we are hoping for a continuing uphill day. Remember, yesterday Will said that it was the turning point. So I am holding him to it. Even though all this has been happening, his new lungs are still in great shape. If we can get the fluids off him and stop the bleeding into his chest, we will be sitting pretty.
Your prayers are being heard by our mighty God. I still am in awe that all of you out there are praying so hard. God has been so merciful and the miracles he's been allowing will be Will's testimony when he gets all better and gets back home. There was over 800 hits on this blog site yesterday. I can't believe it and neither can Will. Thank you, thank you, thank you
Wednesday, March 12, 2008
The surgeon said that he is going to have a long road to recovery. I just told him that Will can handle anything they want to throw at him.
Before Will went into surgery, he told us that he feels this day will be the turning point. So when we went into surgery, Tom and I felt very calm. This should make all of you calm too, right? He will probably sleep all day, except for the tests they need to run. He needs to because he didn't get any sleep last night again. Thanks for the extra prayers during surgery. Again, God is blessing us every day.
I'll update more later.
Angel and Aaron-We love you and we know it's hard to be up there but you're with us in spirit.
Mom and Dad
Will's night went okay. They were doing tests on his kidneys and blood gases. So it seemed like someone was here all night long.
They are going to take him down to surgery about 8 this morning and it should take about two hours. So some extra prayers will help this morning. I will keep everyone updated on his operation. We want to pray for the drs ability to take out that clot that is between Will's ribs and lungs. It's very delicate but his surgeon is the best.
God bless this day for all of you
Tuesday, March 11, 2008
I'm feeling better about his prognosis so I am going to get a hotel room next to the hospital and go to sleep for a few hours. Tom will stay with him and I can get back here in less than five minutes if I need to.
I hope I haven't been scaring people with these blogs, I just want to keep all of Will's support group in the loop. The prayers that we get are unbelievable from all over. We can't thank you enough. Hang with us and together with God we will pull him through this. Ok?
I will update after I get back here tonight. Love to you all
FYI This is Tom and my anniversary. 36 years today. I feel very lucky that he has hung onto this old lady that long. Time flies by when you're having fun.
I won't write a lot, and some stuff doesn't need to be out there. But I will try to put it simply, mainly because I'm fried (I think that's a technical term????)
Will had to go down to xray for a special xray on his chest. He was still feeling tired and having difficulty breathing. On the way back up to his room, he crashed. Let's just say it was so scary for a while. But, I really thank God that Will was here on this floor. Within minutes all his doctors and a few that wasn't his were in his room bringing him back. They had to vent him again so now a machine is breathing for him. They have been working on him for hours and now he's stable again. They need to do more tomorrow because he has lost a lot of blood, don't know where or how. They have given him four units of blood and two of platelets. They want him to rest now so they won't be doing anything else tonight but monitoring everything closely.
Will is sedated so he won't remember, thank God. When they can get the blood and fluid from around his lungs, he will be coming back to where he was, They had to put another tube in his side, and they might have to do another tomorrow morning. We wll see. Dr. Cahill said again just how tough Will is. We all know that. He has just as many tubes, machines, and IV's running as when he first came out of surgery. His main doctor, Dr. Cahill, a saint, I might add, is feeling better about his condition and will pick up tomorrow on more tests and stuff.
Will needs prayers again. For some reason God has a plan for Will and it requires him to go through this. And God has a plan for everyone that loves Will, too. This is when our faith is tested and becomes the strongest. Let go and let God. Right???? I know God has His hand on my son. There are so many passages in the bible that I could put out there but I don't have my bible up here with me. But if you read the comments from yesterday, our good friend quotes a great one that I needed to hear. Thanks Meagan. God brought him through this and will continue getting him through this until we can bring him home. Thanks for the prayers, they are soooooooo powerful. God is again working his miracles.
I will let everyone know as the day progresses what is happening. I really feel this is just a bump in the road.
Monday, March 10, 2008
This wasn't as good as day as Saturday was. He was in more pain so he took more pills so he didn't walk or exercise as much because he slept the day away. Dr. Cahill, his main doc, said to expect days like this. Speaking of sleeping, once Angel and Aaron left this afternoon, I decided I needed some good sleep. Tom took over and I went back to the apt and slept, didn't wake up until midnight. Wow, can't remember when I slept 7 hours. I usually only need about 5 hours normally. It's so nice to be able to do that, knowing that Will will be taken care of while I slept. His dad is a good man, I'm blessed that I picked a good one there.
Will's xray showed more junk. Now they are calling it pneumonia (again spelling doesn't count) so they are really working on the left lung a lot to get that junk out of there. His body is still not getting rid of the excess fluid because the kidneys are tired. He still is quite swollen in his arms and legs although I can see some improvement there. He only had one walk today but he went twice as far (with his sister goading him on, she can be mean). Aaron shaved him before he left and he said it made him feel five pounds lighter. And in his spare time he's listening to his ipod a lot and Iread his comments from here. We haven't heard yet if he gets to move out of this unit today or not.
Will isn't getting his nutrition that he needs, so Aaron suggested that I make him some protein milkshakes, so today I will go buy a blender and try that. I bet that will make all the difference. We don't really want to put another feeding tube in if we can help it.
I hope everybody's Monday is a good one. Ours will be, I'm sure. Thanks again for all your concern and prayers.
Sunday, March 9, 2008
Saturday was a good day for Will. He took three walks with each one being farther than the last. His lungs seem to be doing better but we need to see the xrays to see if they are still plugged. His surgeon came in and said if he's doing as well today then maybe we can move off this acute care and go to the other intensive care. That would be nice, then he wouldn't need a nurse one-on-one. His arms and legs are still swollen but they aren't as bad.
Angel and Aaron spent the day with us. Angel took Will for one of his walks. The nurses were pretty impressed the way she kept pushing him for one more step. When Will gets to feeling better, she will probably pay for that. Will's excited that Aaron is going to shave him today. He's beginning to look a little like the other Willie (Nelson, that is) While Tom stayed with Will, we went to Red Lobster. I haven't been there before. It was good, and it was good not to eat hospital food. For those of you that are feeling sorry for Tom, I did bring him a doggy bag. :) The day went real fast. We did have a visit from Kim and Richard and the kids as they were travelling back from Arizona. Their dog, Macy, had 9 puppies while on the trip so they couldn't stay long. They needed to get those babies home. But it was good to see them.
Everybody have good day and while you're at church, say a special prayer for hospital workers. They deserve it for what they go through. They lost a few patients in the last couple of days and they took it pretty hard. Tough job
Today is going to be a good day. Thanks for the continued prayers and your comments. Now that Will is awake more, he likes to read them.
Saturday, March 8, 2008
Will's right lung is so strong now, it's fully inflated. His left lower and middle lobes are still plugged but hopefully today they will open. He had to go to a small surgery Friday to place some more chest tubes in. He still has so much excess fluid and it's starting to put too much pressure on his lungs. So they went in and drained a bunch off and then put a tiny tube in so it will keep draining. It's called a pig tail. He had a cat scan too. Busy day. His renal test showed some damage trying to get all this fluid off but it doesn't look like it will be long term. That's good news. The blood clot in his neck is quite large and the drs. think that maybe some small ones "showered" off and went to the lungs. This is being taken care of with the heparin drip.
We were hoping that by the time that Angel and Aaron got here we would be able to have moved to the other intensive care unit where it's not so strict. They are very strict here on only having two visitors at a time. This makes it hard when Angel and Aaron come up because we don't get to be all together, but maybe next time. He is where he needs to be and they know their stuff.
He's still very weak and swollen. He says that when he takes a walk, he feels like he's walking on water balloons. Now that's a picture. This morning when I was helping him stand up I told him he was doing good and he said he was looking good too. (His sense of humor is slowly coming back) I probably should have told him then that the back of his gown was open. Tooooo funny. (My sense of humor is back too).
Today our goal is to get that left lung opened up and take a few more steps in his walk. We will work on that and then visit with Angel and Aaron.
A few days ago our good friends, the Drapers, had triplets. They are all doing well and everyone is happy they are here finally. Our prayers will continue for them as they get stronger. God's blessing on you all.
Friday, March 7, 2008
Here are a few pictures from the wedding. They look so happy together. The little girl in the picture is Candace, Aaron's daughter. Angel loves her and she kind of likes Angel too. Everything turned out so nice. Great day! It was so nice of everybody to come all the way up to Salt Lake to the wedding so Will could be there. It didn't work out that way but we are all glad about that turn of events also.
We'll have more later.
They did find a blood clot in his neck and they started him on a heparin drip which will thin the blood and get rid of that. The drs also think maybe Will might have had blood clots in his lungs instead of plugs so maybe that was the problem. They could be right because yesterday Will took a big step forward. He was on 100% oxygen at the beginning of the day and when he went to sleep he was only on 3 liters. What a difference a day makes. His extremities (that's legs and arms for us normal speaking folks) are swelling up so they are checking into kidney trouble today. They will do a scan and let us know. He's starting to be more lucid and can understand things for longer periods of time. He also slept more tonight with less difficulty. Good day all in all. Tom and I are doing a tag team thing. He comes up and we hang together for a while and then I go to the apt. to sleep for a few hours in the early evening. Then I pull an all nighter which is working well for us. Will is so lucky to have a dad like that. Most men couldn't handle the hospital stays like Tom can. Angel and Aaron (aka Mr. and Mrs. Beutler) are coming up tonight after work. That will be nice. They should see a big change in Will.
As I leave the hospital everyday, I look around and see the suffering and the terrible times people are going through. I can't imagine going through something like this without God in my life. How do people survive that don't believe? I know I couldn't because knowing God is the only way. I know He is working in our lives and never leaves us alone. Will is so blessed to be surrounded by people who also believe in our merciful and loving God. The prayers that go up for Will just puts me in awe. You all have been praying for us and we have seen your prayers in a very powerful way over and over again. And I pray that someday I can take these miracles that I have seen the last two weeks and bless others. God is working in Will's life and ours and I pray that you feel the absolute truth of His love also.
Thursday, March 6, 2008
He ate some mac and cheese and had another pepsi. He's eating a lot of pudding which is ok
He did get one of his chest tubes out and now he's able to move a little bit more. I got to stay in and watch that. YUCK! They are drawing blood gases right now, which is painful, and Will apologizes to them for making them come out at 4:30 a.m. to do this. I just shake my head.
Don has turned out to be Will's favorite nurse. He's an older man but he is just so caring. I don't know what we would have done if we didn't have him taking care of Will in the evenings. If we don't understand what's happening, Don explains it so even I understand. Well he's taking a few days off, which he deserves after putting up with us 12 hours a day for several days now. (Will still needs one-on-one nursing care). Before Don left tonight he came in and gave me a hug and told me Will was the most amazing patient he's ever had. That was very touching to me. Later I told Will what he said and he came right back with "He hasn't been a nurse very long, has he?"
Will's medicine still keeps him in the fog sometimes. One time today he woke up and wanted to know why he was there. I explained he was in the hospital. He said he wasn't, that he was in the Bliss school parking lot. How sad is that? Of all the places that his mind could have taken him and he goes to Bliss.
People have asked me to let them know specifically what to pray for so I try to let them know.
today we need prayers to get those two lobes unplugged so he can get those lungs working as well as they can. After that we should be able to move forward quickly. Prayers are a mighty tool and God listens to everyone. Thank you for keeping our family in your prayers and I hope I can do the same. We miss everyone back home and it won't be too long before we get back there. Our God is an awesome God.
Keep the comments coming, please. They're our form of entertainment.
Wednesday, March 5, 2008
Right now he is sitting up and drinking some milk. It's almost five in the morning. He says the last time he was up this early was when he was coaching jv. Long time ago. I said that was a lot more fun than this and then he said that this could end up many time more fun. How's that for attitude. Some times he's very lucid and sometimes he isn't. He is starting to "wake" up more and understand things. Quite a few times in the day, I still have to tell him that he's in the hospital and that he's had his transplant. They are cutting down his medicines every day so it won't be long where he will remember everything. Boy, he's going to get mad when he finds out I sold his car and took all his money--just kidding.
I still can't believe how many people are checking this blog spot out. I have told the nurses here and everyday they ask many how many "hits" now. What amazes me even more is the prayers that are going up for Will's healing. Everyone is heard by Him and then He sends it back to us with love. We really do feel the love from all of you. Thanks just doesn't say enough. Will is very blessed to have all of you pulling for him. God bless you all.
He loves the comments and thanks for those too. I will let you know how the day goes. We are hoping the lobe of the lung that has collapsed will inflate after moving that plug. That's what we are praying for today.
Tuesday, March 4, 2008
The doctors had to put him back on 100% oxygen which made Will upset. He doesn't like taking backward steps. He still has a way to go before he is back to where he was but at least we have him going in the right direction.
By the way----the big news------drum roll, please. He got a pepsi today!
There now you have it. bad news, good news.
He's working hard, a lot harder than anyone I know could. He amazes me still after all these years. God sure made one tough guy when he was making Will. I only wish I was half as tough.
Continue prayers as he works his way through this set back.
He is now staying awake longer periods of time. So for entertainment, I am reading him your comments. So if you have something to say, please do so.
Thanks for all the words of encourgement.
Monday, March 3, 2008
It seems the days go by really fast. Because this is a teaching hospital, there are always people in and out. Yesterday the physical therapists got Will up and sat him in a chair. He wasn't able to do that today because his heart was going too fast. This doesn't concern anyone. The drs. say it happens and then tomorrow his heart will tolerate moving around just fine. Will is hoping today that he will be eating pizza. Nothing wrong with hoping, but I think they are going to try for broth first.
The first thing he asked for when they said he could have liquids was PEPSI. What else??? His voice is still raspy from the vent but it is stronger. He still rests a lot and he is off all but six iv's. He's moving along.
Well, better get back to doing what I do best, watching his lungs breathe. Still amazes me. God is great.
Sunday, March 2, 2008
I feel bad that you all have been waiting to hear and it happened almost twelve hours ago.
That's too bad that you didn't get to read what I wrote either time. It was really good. Now I am tired and I just will give you the bare facts. My typing skills are going down fast
They ran the tests and Will got good numbers. Tom was here because I had just got home to change out of my wedding clothes from the night before. Ladies--can you imagine having to be in nylons the whole night. I hope you feel my pain. I told Will to quit complaining because I am in nylons. He just doesn't understand how that could be worse than what he's going through. Men!!! So Tom called me to tell me that they were taking it out and by the time I got back up to the hospital it was already taken out. Just like that, without much fanfare.
So I walked in and there he was laying there and his lungs were breathing all on their own. That was a great experience.
Later that day, I was just sitting here with Will and the nurse came in. She asked me how I can sit so still. I tried to explain how I was feeling. The closest I could come up with it's like I was watching my baby when they learn how to walk. You may have seen it before but you just love to watch. Well, that's how it is with me. I love to sit here and watch his chest rise and fall with those new lungs.
He has been in lots of pain today but tonight it is better. He will get on top of it eventually. The pain isn't from taking the vent out, it's just because his poor body has had so much done to it.
I will write more on that later. Just wanted to invite you all when you go to church today, send up special prayers to thank God for the miracles that has been happening this past week with Will. Our God is an Awesome God. Everyday there is something that is showing us God's power and love. I can't even type now, I am taking more time correcting my typing than typing.. I will write more later- God bless you
P.S. I forgot the cord to my camera so I will post some wedding pictures as soon as I can. Thanks
Saturday, March 1, 2008
Will didn't get off the vent yet. He still has too much liquid around his lungs and it makes it hard to work them.. There is nothing wrong with the lungs. They couldn't be better but Will is waiting until they are so ready to breath on their own. He continues to hold his own no matter what anybody is throwing at him.
If you don't know anyone that has had a transplant, most are afraid that the new organs won't work. Last night Will asked (remember that he has to spell everything into my palm) if he can have his old lungs back. He was serious. He knew how to breathe with the old ones but he doesn't know how to breathe with the new ones. He has to learn how to breathe all over again with a full, clean set of lungs. You wouldn't think that would be the case. He did do very well on some trial runs today so maybe soon he will be off the vent. They don't set a date anymore. So maybe soon
Well, I just wanted to tell you what's going on with Will. The bride and groom, Angel and Aaron, came up after the reception and Will got to see them in their wedding attire. He was glad. Well, you have a good one.
God bless and I will catch you up with wedding stuff.