"It's all going to be worth it!" Will wrote that on his paper before he fell back to sleep. He wanted me to let everyone on the blog to know that. "Everything that's worth a lot usually takes a lot of work." He also said to share that. He seems to want to reasure his friends and family that he still feels positive even though he had this little set back.
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
God bless
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16 comments:
Terri, you were great on the news. And you looked good!! I was expecting to see something like I see in the mirror after I haven't had enough sleep, but it wasn't even close. Will can be very proud of you. Our Father in Heaven had a plan when he sent Will to you and Tom. He must have known how many lives your family would touch for good. You are all a shining example to all of us.
Terri, you did a great job for the interview! Good pictures all the way around, too. Don't they always cut some of the stuff you think should be used?
It was really nice to see you - the next best thing to in person. You are all STARS****.
We are praying for progress today with the vent and thank you again for the updates. Love, Susan and Roger
I just have to say, as the niece that is about to give birth, that I'm not a bit surprised that you are both still focused on other people and their well-being.
Will, I don't know anyone else that could go through what you have been going through and still find the strength to care about whether someone else has had their baby, or how someone else might be affected by your progress. Again, I'm not surprised. That goes for you too, Aunt Terri. I’ve seen you both find your strength in each other, and you deserve as much credit for your selflessness and spirit.
I do have to add, however, that you’ve placed a bit of pressure on me. After watching you weather all these painful procedures and processes, I’m going to feel pretty wimpy getting that epidural for a silly little thing called childbirth. (Especially since I’ve already requested that it be available upon my arrival at the hospital.) So thanks a lot, Will!
Good morning Harbison family! I just finished watching the link with the news segment! How awesome that they did a story on you wonderful people! Mom, you looked great and it was so, so refreshing to hear your voice! Your friend Somer was great too. I can tell she has amazing energy. All of this is so incredible, I can hardly wrap my head around it! Will, you are truly an inspiration. I feel so lucky to know you. I think about you everyday (even more so now that April fools is around the corner)! I am sending you all my positive thoughts, energy and prayers! I can't believe it's been a month since your new lungs! I am trying to be patient but I can't wait to see you again! take care, love you all very much. ~Bina
p.s. Will, I'll do some extra pranking in your honor this year and I'll be sure to give you a full report later. Oh and for the record, if by chance you get a hallmark card in the mail that's super glued shut just know that I had absolutely nothing to do with it! :)
Teri, you did an amazing job in the interview. And I think you look FABULOUS! I hope you have a great day today Will, it just feels like a good one! Here's to getting off the vent (I agree, pray big) and getting the swelling to subside. Scott, Jen, Traj, Ryk, and Dax
WOW, Terri, that video was great! I thought you looked wonderful! And the pictures of Will and of Angel were awesome. Terri, you always think so much of everyone else that I just don't think you know (even though you can read it in all the blogs every day) how wonderful you are and what an inspiration you are to everyone who ever comes into contact with you. Of course, Will, you are beyond amazing. Every time I read your blog, I wonder how the rest of us can be so cavalier about how we live our lives and how we can be so unaware of just how fortunate we really are. I can't wait to see you walk down that road. The problem is, you are going to have to start walking from the freeway, because with all the people who are wanting to watch you make that walk, the road will be lined up from the freeway to your house!
Terri, you did a great job on that video and even though they didn't say everything you wanted them to say about organ donation, it was the last thing on the video, and that makes it something people will remember. I love you all and can't wait until you are all back in Hagerman and we can see you all.
Hi Will!
I'm wishing and praying for a great day for you today. And for your rest and comfort along the way.
You should know I'll be one of those people lined up along the dirt road when you begin walking home.
Great job, Terri! Thank you for bringing awareness to the world about CF and about organ donation.They may not have spoken the exact words you wanted to hear, but I believe the message got out by example.
Many hugs to Will, Terri and Tom!
Love,
Katie
Hi Terri and Will,
We have been watching you from a far. And Karen has been keeping me in the news. The Stout and Lancaster family are sending their prayers daily. God had a plan when he blessed you with little baby Will. He knew you would be a strong, amazing mother who would give everything she has to help Will through life. He is blessed to have you and you are doubly blessed to have him. We send our love.
Hey Mom!!!
I think you totally rock... Thank you for doing this for Will...
I think all CF Moms are special -- I have one of my very own... I have trouble imagining what it's like to watch your child struggle -- but I do know what it's like to feel loved... By my Mom and by all of the people around me... It's pretty obvious your Will feels that too...
I hope Will gets over these bumps quickly -- I hope that very soon he knows what I know -- and feels how I feel... In a little over a week, I'll celebrate the eight anniversary of receiving two beautiful, new lungs... It's been eight years for me, Mom, and this still blows my mind every freakin' day... I still wake up, and walk around in amazement at how this feels, and what I can do... Will will be in my shoes soon -- and I hope he stays in them for a very, very long time...
I loved the story -- I loved hearing about Somer and how she follows Will... I know he inspires her -- she may be following in his footsteps some day -- she needs to know that there is a strong potential for good in the future... And I hope Somer lives a good, long time before she deals with all of this... But if and when she does -- I hope the lungs she needs are available quickly...
And I'm so very looking forward to hearing about Will getting out at that stop sign, and walking his way home through all of the people who have been supporting him...
I have some of my story, and a little tribute to my donor at www.ClimbingForKari.org I also blog about organ donation at www.ReviveHope.com And one of my blogging partners was actually a close friend of the beautiful girl whose lungs I breathe with...
You take care of that Will -- it's so special what you're doing for him, and for all of the people who love him... Thank you so very much... Sometimes when you're going through this, even with our Mom there, it gets scary and lonely -- it sounds like you've helped an awful lot with the lonely part...
Love,
Steve
Steve Ferkau
Chicago, IL
BreathinSteven@gmail.com
Terri, don't let everyone telling you how great you looked go to your head. If you want to know how you really looked just ask me or Tom. At least we'll be truthful. You did do a great job with the message. Next time they ask you to go on TV have Julia Roberts play you. Ask Will what he thinks ?
Terri how I wish I was one of those White kids living next door so that I could be playing some pranks on Coach! i don't think I did enough of that as a kid. LOL
Though I think you looked GREAT don't listen to Randy because it's what is on the INSIDE that counts. I think everyone else knows that but him. He's a little slow... I bet Will wouldn't like him talking about his mom like that! (especially after all you've done for him lately, right Will?) lol
So the kids and I just watched the segment for the second time. Jesalyn recognized all of you and Mason kept saying "that's Will! that's Will!" He even said "hi" to you once!
Jesalyn said that Angel was the silly girl that thought she was Builder the Bob! I said you mean Bob the Builder and she said "oh yeah!" So see how much you impact the little ones Angel. Now all she is talking about is coming back to see you. My mom and Kim have their work cut out for them, I'm not sure they can be better than Bob the Builder. They better get creative!
Many, many, many prayers coming your way!
Love you all lots!
Jess
Terri, I am a Mother of a cfer as well. My son is six years old. Thank you, for bringing awareness to this horrendous disease. Know that, you and your son our in our prayers. I will continue to read your blog!
Carey from Michigan
How COOL is that...?!!!? SO MANY people from ALL OVER pulling for you Will!! AWESOME, just like YOU!!! Your "cheerleading squad" grows!! Isn't it neat that they are leaving blogs, and letting you know where they are from...!!?!! The prayer chain grows and grows...HURRAY!! Way to go Terri and Tom, Angel and Aaron...sharing YOUR story, and Love for Will has opened the flood-gates of good wishes!! YOU are ALL SO SPECIAL!!!
Will, Terri, and Family,
I started reading this blog once I heard about it. Even though I did not interact with Will on the sport side I still have thought about him often over the years. Something about his smile was so contagious. He would come into Movieland when I worked there always smiling and happy. I always enjoyed the small chats we shared. I will keep you all in my thoughts and prayers. Will, you are going to have many many people waving you down that dirt road when you get home! You have touched so many people in so many different ways.
By the way Terri, you did a great job in the interview and you looked great too!
Congratulations to Angel on her marriage! It sounds as though she has found a wonderful and supportive man.
All my love and well wishes,
Melissa (Kruse) Thayer
Welcome Carey and Steve,
Thank you for sharing! You've tapped into a very special family and Terri is definitely an awesome resource for you. I will definitely read more on your story Steve. And Carey I teach kindergarten and have a five year old of my own, so hearing that your child is only 6 definitely hits home to me.
Our family will pray for yours as well!
Jessica
Will it's 10 p.m. here and we just got home from a walk on the beach. Spent a lot of time recalling old times and sharing stories with Martin, how I wish he would have lived closer to get to know you too. Plenty of time now I know, maybe your trip here will convince him to move there. LOL Sleep tight, hope they leave you alone tonight!
Jess
Jesalyn says "I hope you get well! And I'm sorry that you got sick. "
Hi Terri, Will, and Tom,
You looked wonderfull Terri on tv. Thank you for the web site on how to look at the news segment. Janene and I watched at work last night.
I can't wait for the day that Will comes home to Hagerman and walks from the stop sign. I will make sure I have that day off and am there.
I hope you start taking the right steps forward and no more steps backward Will. Everyone on Peds is rooting for you.
Thank you for keeping us up to date Terri. It gives my good reading for the nights I'm working Peds. Reading about our favorite jokester patient.
Take care. Were fighting for you Will.
Love,
Dixie and James
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