Wednesday, April 30, 2008
This is a picture of a happy Will. Coach (AKA Randy) and Donna, his poor, suffering wife, came down to visit Will. Will passed his Barium (sp??) swallow test and he waited until Randy got here before he had a Pepsi. He did have water and a sprite before that. So Coach stay about 2 1/2 hours and then they drove back to Hagerman. Will didn't want them to leave. One of the most painful things Randy has had to do lately was to buy Will this hat and a Celtic shirt. It's the Celtics and Will and coach have been in this rivalry with the Lakers and Celtics for many years. This year might be the year that the rivalry be taken all the way. So when you double click on the picture you can see Will with his Pepsi and his Celtics hat. Donna brought us up a gift too. She made Tom two meatloaves and me a big container of chicken noodle soup. What good friends and it was so nice to visit.
The drs. started Will back on Lasix drip tonight to see if that will help get more fluid off. Will is sleeping more comfortably this evening. We need to keep him moving all the time. That will open Will's lungs up faster than any other thing.
This should stay pretty much the same.
Tuesday, April 29, 2008
Then he took a short nap and he woke up and wanted to try to walk a few steps. He walked the six-seven steps to the door. Touched the door and came back. He was hurting pretty good by then but it made him feel sooooooo good.
We still don't know about the swallow test. They want to do a different kind of test where they make you drink this dye and then follow it down your throat to make sure it's all going where it should. This is probably because last time Will aspirated into his lungs. But that wasn't the stuff he was drinking. It was from the feeding tube. But still they would rather be safe than sorry. He told them it would be okay but he really wanted it to happen today. So they were going to try. I will give you an update when I write this morning. I am going to sleep now for a few hours.
FUTURE ATTRACTIONS; You all need to come back and make sure you view the picture that I am posting in the morning. You don't want to miss it.
Take care and God bless
Okay this is the new Will. The bald head and the tubeless look. I will tell you how this happened.
Because of some of the anti-rejection medicine, Will's hair grows faster than normal. In the nine weeks he's been in the hospital his hair was longer than mine. He's had a bad, bad case of bed head. It's hard to find a barber to come to the hospital so one of the nurses offered to give Will a short haircut. We thought he would leave a few inches on his head. Nope, he shaved it bald. That was three days ago and look how much it has grown already. The big guy, Steve, in the picture is one of our older friends (respiratory therapist) from 2nd east (the cf wing). He also just had a bald cut to raise money for children's cancer and so I wanted to take a picture of the two bald friends. I am beginning to like the new look. Will still needs a shave but he's waiting again for his brother-in-law, Aaron to do that this weekend. What does everyone think of the new and improved look???
He's doing great and he didn't get the swallow test until this morning, they will take him down to xray and do that special test. The drs. just don't want to take any chances. So thanks for that. The Pepsi can wait for a few more hours. Everything is looking good and just gets better and better.
My mom went home today. It was sad she went home, not just because she was cooking for us, but because she's my mom and I love her. She's a good person and I'm glad she got to be here for when Will got off the vent. It made her day, maybe even her month. Thanks Mom
I hope everyone likes the picture of Will. I will have more later this week. Sarah, our friend that had the transplant before Will, is coming for a visit on Friday and I want to show everyone how well she's looking so I will get a picture of them. I also think his friend, Coach, (aka Randy) is also coming up tomorrow. He's stayed away a lot longer than I thought. He's only going to be here for a day but that's great.
Life is good, God is awesome
It's been so WONDERFUL hearing his voice again after almost three weeks. It's still a little, tiny croaking voice but it's wonderful anyway. He has spent the afternoon just sipping water, swirling and spitting. He can't swallow until he passes the swallow test probably set for later this afternoon. Will and I will be studying up for that. He already had me put a Pepsi in the fridge up here so it's good and cold when that happens.
Most of the nurses have come by and they have been so excited for Will's "big" step as I know all of you are too. Many of you have been sending emails for him through my email account.
Thank you for all the words of encouragement. If he passes the swallow test, I will blog and let everyone know. That way you all can run to the store and grab a Pepsi and have one with Will.
The weather should be beautiful today. Enjoy the sunshine, can't wait to get Will out in it.
Monday, April 28, 2008
Now we will work on his strength.
He's sitting up almost by himself and he doesn't shake too badly. They have quit most of the iv meds, just a few antibiotics. The lasix is done for now. That's the med that has been drawing the fluids off Will. Even though he still has about 3 liters that he needs to get off, he will do that after he can start moving. He looks so much better. But then I thought he looked pretty cute before. Just don't tell him I said that.
Your prayers will be appreciated for this day. If the doctors allow it, he probably won't get it out until later this afternoon. This is his schedule so far. He will have his treatment about 9:30 and they will set his numbers down to 7 over 5. Those are the numbers that we have been working to bring down. A few days ago we were 12 over 5. Then after a few hours on that setting we will try to put it down to 5 over 5. He needs to do that for an hour (He did that today for a practice and went 1 hour 20 minutes.) Then the drs. will order a peremiter test and if he passes that, then they get together and look at all the blood work, volumes and numbers and decide if he's strong enough. So you can see how long it will take. Just everyone think postive today. I really believe it's going to happen.
I will post a blog and let you know later this afternoon how it is going.
Thanks for the prayers and God bless.
Sunday, April 27, 2008
We are just going to do more of the same tomorrow--blowing those high numbers and trying to open all those little areas that haven't had much air through them.. Sitting up and maybe standing up again. He's getting better and better. It is so good to see.
My mom has been making me good food and tonight she made Tom his favorite chicken fried rice. It is so much better than hospital food. Mom will stay for a while longer. She wants to see Will off the vent. I haven't forgot about some more pictures but I haven't had the time, and sometimes when I get to the apt. I just feel like sitting and not doing anything. Then I fall asleep. But I will get them up real soon. Maybe tonight.
It was a little warmer in good old SLC today and I think maybe we will have some more tomorrow (or it might snow again) I hope everyone takes the day of rest and does something fun. Don't forget to tell someone you love them. That just makes the day perfect.
God bless and sing extra loud at church for us.
Saturday, April 26, 2008
Will stood up two times today. Just stood for about 20 seconds but it's progress in a big way. Dr. Cauhill was here to admire her guy. I think that's why he wanted to stand twice. She brings the best out of him. They got another liter and a half today. We are going to try for another liter in the next 24 hours. Pretty soon he will be back to normal weight. Can't wait. That and the moving is really getting his lungs stronger.
We are still waiting on the tests that they took yesterday. They should be back tomorrow or the next day. We will continue to do the same things over the next two days. Get fluid off and make him move around. He needs to expand those lungs. They are getting so much better. We are watching the kidneys very closely because of all the fluids coming off. They are working overtime but they are doing great.
It hasn't snowed in the last 24 hours, maybe spring is almost here. ha ha Salt Lake weather is almost as crazy as Hagerman's weather.
We were talking today about how we miss everyone back home. It seems a long time ago that we were there. A lot has happened since then. Wonderful miracles we have seen, not just in Will's life but in others also. We have seen patients get better that drs. didn't think they would. I feel so lucky to experience this. It makes me love our Lord that much more. I keep saying it but He really does have his hand upon Will. He's listening to our prayers and answering them in His time. Thank you for your continuing love and support. Have a great Saturday and do something fun in the sun.
Friday, April 25, 2008
So, sometimes when you have been in the hospital a long time you begin to feel a little frustrated. My dad has a saying that he heard somewhere, "The definition of insanity: Doing the same thing over and over again and expecting a different result." That's what we have been feeling like the last week or so. So frustration was pretty high in Will's room. We decided to tackle the drs. and let them know how we are all feeling. When they made their rounds today we talked to them. I think they saw our point and are going to do things a little different now. Dr. Cauhill came in and explained things a more fully and let us know she's not worried.
Drs. decided to put Will on some more antibiotics to cover some things that have been happening. They did take a mono test because Will has been sleeping a lot the last 48 hours. They also took some cultures and both those tests take a few days to get back to us.
Will sat up in the chair for 40 minutes today. That was very good for him. I think they are going to try to get physical therapy twice a day now. Then we had a couple of visitors from 2nd east and that made Will feel better. Also, he had one of his all-time favorite nurse today. She was the one that gave him a massage on his birthday, so of course she's one of his favorites.
Pray for the tests to come back negative and for Will to be able to handle physical therapy twice in a day. It would be so good for him. Pray for all of us not to let that frustration get to us. Any of you that has had to spend a long time in the hospital know where we are coming from.
Life is good and we feel very lucky, no not lucky, blessed to have been allowed to have Will's new lungs at this hospital. His nurses, drs. and respiratory therapists have all been working so hard on Will to try to get him over these little "bumps." We do feel that we are getting THE best care here.
My mom just came to visit today. She hasn't been able to get up here because she was in Reno the last 9 months taking care of her sister as she was fighting a battle with cancer. I was really glad to see her.She'll stay a few days with us. She was really happy to see her grandson.
Thank you for being a part of the 30,000 hits on this blog. God bless you all.
Thursday, April 24, 2008
I don't have much more to say this morning. I have still been working on Will's paper work that has been neglected.
Today marks the two month anniversary for Will's lungs. Yea!!! Happy anniversary for Will's lungs. We'll party later I think. While we pray for more strength today I would also like our praying friends to say a prayer for the donor's family. They are going through a hard day. I hope someday we can meet so they can see what a great gift of life they gave our son. Don't forget that April is Organ Donation Awareness Month. If you haven't already told your family your desire to become a donor, please do so before too much longer. It's amazing how much it can change some one's life. If anyone has any questions, please feel free to contact me at firstname.lastname@example.org or look up the national center for organ donation. Thank you.
Wednesday, April 23, 2008
His nurse just came in and said that they need to give him a couple of units of blood this morning because his count was too low. I know I explained this before but for anyone that hadn't read that blog, the reason they gave me was that he's not bleeding out anywhere but when you are critical for a long period of time and laying down, your body doesn't want to make as many cells as it needs to. That's why they do blood workups every morning. They stay on top of things like this. I should have known that he was getting low because he wanted blankets on him. He's never cold, in fact we usually have to bathe him in cold water or ice water all the time. This will help warm his blood right up. Probably give him a lot more energy too. I'm hoping he will stay awake for longer periods of time today.
He asked today if I had heard about his "girls" lately. (That's his basketball girls team) Keri Peterson has been keeping up informed about what's in the paper about their other sports. But if any of you know anything else, let us know so I can share with Will. Thanks.
My prayer request today is to help Will lower his vent settings and make his breathing muscles stronger. Also another request. Please thank our good Lord for putting Will's heart back to where it was needing to go. Again, all the praise goes to Him. I've said it before and I'll keep saying it, our God is an awesome God.
We'll keep working on his strengthening exercises and it won't be long before he is walking the halls again.
Tuesday, April 22, 2008
While this was happening they had to decide just to freeze everything where it was. He didn't have any exercises and no breathing treatments today or tonight. We went back up on the vent settings because they were worried that he was working too hard. When your heart beats that fast you get exhausted. Well, with him trying to get his breathing muscles working again, it taxes all your strength so they just put him back on support of the breathing machine instead of him trying to breathe on his own. So he's been asleep most of the day and night.
This morning was the morning they had planned to get him off the vent. The goal was just about there. His settings were showing that he was almost ready. So now I don't know if he has to go through all that slow weaning down again once they find what happened with his heart rate, or if he can just go right back to the settings he was on. We will find out when the drs. make their rounds this morning. This is just another little bump and his heart is already slowing way down to 120. So things are looking better.
I told him just now that he's done just laying around, he said okay. He's ready to run. So I heard it from him. Then I told God in my prayers today what Will said. So hopefully between them both we will be doing great things now. If we get any of the tests back today before I go home to sleep, I will post them for you. Pray for his heart to fix itself. Thank you
Monday, April 21, 2008
Angel and Aaron are back in Hagerman now and we miss them already. They did have some quality time with Will. Hopefully when they come back up here in a couple of weeks, Will will be so much better and able to talk to them.
I came across this quote, don't know who wrote it but it really fits Will, don't you think?
Tough times don't last.... Tough people do. I think I will put it on a t-shirt and he can wear it when he gets out of the hospital. That's going to be our new motto, besides Will's quote as "It's all going to be worth it."
I have some more pictures to put on the blog from yesteryear. Some of them are funny. But I need to upload them at home because the university guest Internet is way too slow, it just won't upload pictures. If any of you have any pictures of Will from a while ago, send them to my email email@example.com I will ask Will if we can put them on the blog.
This is the beginning of a whole new week with great possibilities and expectations. God has it all under control, but when I was talking to Him last night, I asked Him maybe this could be the week that things turn around for Will. I know it's His perfect timing, but it doesn't hurt to ask. God listens to all prayers.
I hope all of you have a great week also. Lots of prayers coming your way.
God bless you all.
Sunday, April 20, 2008
Will had a better day today. He stayed sitting up on his bed about 20 minutes with his sister egging him on the whole way. When we do the exercises with him, he's pushing against my hand a little bit harder. So his strength is returning. It won't be long now.
He got over two liters of fluid out of his system in the last 24 hours but the drs. said that might be a little too fast, so we are going to try just to get one liter a day. Dr. Cauhill said he has about 7 liters extra on his body. His kidneys are working overtime but they are still in good shape.
Willie's Uncle Dave came up on is way to Cancun (he's a Delta pilot) and he stopped and took Tom and me to dinner. It's been a while since we ate together. We had a good visit. It was a nice meal and Angel and Aaron stayed with Will. Their visits go by so fast. They will be leaving tomorrow earlier than normal because it's supposed to snow in the afternoon. ????? Where's spring?
We will just keep doing what we have been doing, trying to get his strength up. Will's working really hard and it shows. Thank you for the good thoughts and prayers.
Love to you all
Saturday, April 19, 2008
Angel and Aaron got here tonight. It sure is great to see them and I know they are good for Will too. He's got to be so tired of just seeing us all the time.
Will is doing a little bit better. Because of the medicine they gave him yesterday, they took over a liter of fluid off of him. They decided they needed to do that again and they already have another liter of fluid. This morning they will check the labs and make sure we aren't making the kidneys angry because we are making them work so hard. He did sit up at the edge of the bed twice today. It takes so much out of him but he does it. It also takes four people to get him up there and hold him up. But everybody is so nice to him and it makes him feel likes he's accomplished something--which he has. He's handling the pain better and he is sleeping better at night now. Yea!!! We are still going through all his birthday cards from all of you.
Will has a little cousin, Billie's daughter, Sadie Kay, who has sent us voice messages to our phone. They are old but we keep playing them over and over. (hint-Billie, we need more of them) When he is sitting up we let him hear those because it makes him smile. She is such a little goof ball and everyone knows little two year olds are cuter than cute. He also has another cousin, Jack, who is in Kindergarten, and his parents tell us some of the craziest stories about him. We get to repeat them to Will often. It just cracks us all up. Kids are the best people ever!!
The weekend is here again and we will see what it brings for Will. Hopefully we get him up three times tomorrow and it won't take so much out of him. The drs. say the best medicine to get the fluid out of his body is by him moving. So we want to promote that whenever we can. So right now I am teaching him the cha-cha. Naw, just kidding. Everybody has been sending him some great emails and blog comments. Thanks so much again. They mean everything to him. The words of encouragement are what he needs, and the funny jokes are helping also.
Thank you God for letting all these people come into our lives. Amen
Friday, April 18, 2008
Help me fight cystic fibrosis by asking your Member of Congress to recognize May 2008 as National Cystic Fibrosis Awareness Month. Check out this website at the Cystic Fibrosis Foundation to see how you can help. Get involved click here; http://capwiz.com/cff/issues/alert/?alertid=11220821&type=CO It gives you a way to contact your representative. My nephew, Randy, told me today how to get links on these things. I hope I did it right.
Will had to go back on more lasiks (sp???) today because his lungs are filled with fluid. That's the medicine that takes fluid off. I know it seems like we keep going over the same ground over and over again. But it is getting a little better. Will's pain is lessening and when we get this fluid off, we should then be able to concentrate on the vent coming out. Hopefully. He tried to sit up today but it didn't go too well. So we will try tomorrow. His tube feeds are now all the way up to where they should be so with enough nutrients, he should be getting stronger. Tom and I still exercise him several times a day so he doesn't get too stiff. Angel and Aaron will be up tonight, Friday, to spend the weekend with us. Then they can exercise him for a while.
I think his attitude has gotten a little better. It helps having those lines out of his legs and letting him move a little bit.
Thank you for the prayers and we will let you know how things are going. The doctors say his kidneys are doing better.
Thursday, April 17, 2008
Tuesday, April 15, 2008
I had some pictures with me here in Salt Lake, I thought I would share them with you. The first is Will when he was four days old. (the picture with the other kids are his two cousins, Christi and the new baby, Billie) The rest of them, he is wearing red, I must have liked him in red. Except for the picture of him playing basketball. See the guy in orange #11--that's not Will. Will is the one right behind Tommy. How funny is that picture, I don't know what his coach was thinking at the time. :) Wasn't he just so cute!!! Okay, that's the mother in me, couldn't help it.
Will's blood gasses were not where the drs. wanted them, so they weren't able to wean him off the vent. But they are going to try early this morning. Still can't have any more pain meds. He didn't have a good day yesterday because of his pain. He slept for just a couple of hours tonight. We are going to read him all his cards and emails that have come in. Other than that, I think we will put off his birthday celebration until later. I will go and get a cake to share with all his caregivers today. Maybe by the time Angel and Aaron come up this weekend, he will feel like celebrating. If things happen today, I will let you all know.
It's hard to believe that 34 yrs ago I met my amazing son. It seems like yesterday. What a ride it has been, and what a privilege it is to be a mom. I thank God all the time for allowing me this blessing. So Tom and I will celebrate even if Will doesn't feel like it today.
By the way, I drove back to our apt. late this afternoon and it was a blizzard. Snow is still on the ground. Yesterday it was 80 degrees. What is with that??? Well, I hope everyone has a great day, snowy or sunny. Thanks for the prayers to get off the vent today. This next year is going to be so AMAZING for Will. What a change it will be.
God bless all of our friends and family.
The stomach tube is working just fine. It's not just a normal tube, but it goes down into the second part of the small intestine. If Ryan (my nephew who is a nurse) was here, I'm sure he's got a name for it. Anyway this will guarantee no aspirating into the lungs. That's why the procedure was a little more painful because they had to take a wire and thread it down there and then take a tube down. That was done with just a little pain med. They put him back on the tube feeds within a few hours because he is very malnourished. He needs nutrients now.
Speaking of pain meds, Will is going to be taken off all pain meds today because his blood pressure is still unstable. They don't want to take any more chances. Then they want to take out the vent tube. This will be a very important day and I know he can use extra prayers because the pain is going to be a little intense. He can do it, but he's not going to like any of us. But hopefully, tomorrow, on his birthday, he will be vent free. I don't know then if they can get him back on some pain meds, because he will have to start moving as soon as possible. There is no other way to get the swelling down off his tissues. They are still watching his liver numbers but they haven't gotten any higher in the last few hours.
Like I said before, Dr. Cauhill is back and she is on a roll. Her main objective is getting Will moving and breathing with those new lungs. I will tell you now that Will is a little skeptical about the new lungs being able to breathe right, and who can blame him. He just needs to build confidence up and really be able to trust the lungs. Seriously, even with all the "hits" they have had, the lungs are strong--just like Will. God gave him a good match.
So today, please pray for the pain to be lessened and for Will to be strong. I will try to let you know later how it's going. Maybe say a prayer for Tom and I also. It's so hard to see your child. now matter what age, be in pain. We can do it because it's all going to be worth it.
Love to all and God bless
p.s. Juli-Thanks for the book, I love it, and all the comments. You know what to say because you've been there already, just what we need to hear.
One more day until his birthday. We are going to bring a big cake in here for the staff.
Monday, April 14, 2008
Well, hopefully they have the Internet fixed and I can get back on my schedule and say more profound things. Thanks to God and the good drs., Will is done with the feeding tube out of his nose. It will be nice, it's been 7 weeks with that in. Great staff at this hospital. The nurses are out of this world. He does have his favorites though. Nothing makes him happier than when he gets one of those nurses. It's the little things in life that are special.
My mom made it home from Reno tonight. She has had a rough 8 months. Now she will be able to rest and Angel and Aaron will take good care of her. She does need some TLC after what she's been through. Welcome back, Mom.
The weather here was gorgeous. The wind was terrible, but it was so nice to see the sun shine.
Everybody enjoy the sun. Two days until Will's birthday. Maybe he will have the tube out by then.
They have ran more tests today on his liver. We should get those back later tonight or tomorrow. Some of his blood has come back with odd numbers for his liver so they need to stay on top of it.
Dr Cauhill (his main Dr. and the one he loves the most) just came back from a week in Boston at a transplant convention. She wasn't too pleased to see Will back on the vent although she knew about it already because she calls and checks on him two or three times a day. Now that she's back, watch how fast Will gets off the vent.
They are getting ready to put in the stomach feeding tube. I will give you the details on that later. This is going to help everything. When the samples from Will's bronch last week came back it showed tube feedings had aspirated into his lungs. This could have been a terrible thing if infection had set in. Again, God had Will's hand and didn't allow that. But for the grace of God, right? He was spared that. So now we shouldn't have any problem with tube feedings.
Please keep Will in your prayers (I know you do already) and I will get away later and post more.
Sunday, April 13, 2008
Will's birthday is on the 16th. I can't wait. So many cards are coming in. Thanks again.
So if you don't hear from me by morning you know that the internet is still down. I will post asap
Everyone have a good night sleep.
He's doing okay. I will post more later when the internet comes up or when Tom gets here and I can leave to come back to the library. Enjoy your Sunday
Saturday, April 12, 2008
Thanks everyone for the prayers, I feel stronger already.
This is how they explained it to us in a nut shell. If they give him pain meds he gets weaker, his breathing is compromised then he's not strong enough to get off the vent, then he's prone to a bad vent infection, then he gets worse, he spends more time in the ICU and less time at home. This has also affected his kidneys and liver to an extent. Now when they explain it like that I can understand, but when Will is saying he is in too much pain none of it makes sense. I think right now I just have a bad attitude. We can handle most things except seeing him in so much pain. They did decide to compromise and give him some to let him sleep tonight. Hopefully that will help him tomorrow. Right now he's sleeping very comfortably.
Now tomorrow they are going to put in a feeding tube into his belly. This is done surgically and it will help put nutrients where they belong. Most of the samples that they took out of his lungs a couple days ago during the bronch has shown tube feeds. So what that is saying is that Will has coughed so hard or gagged so hard that he brought this tube feed up into his lungs. It's called aspirate. So the main dr. thinks this could have caused the last lung distress that put him back on the vent. They decided to put this other feeding tube in because it will have a port that will drain anything out of his stomach so he can't do this again. This is a good thing. They did do an ultrasound of his liver and I don't have the results yet. I think the dr. was too afraid to come into Will's room. Angel gets kind of hot when Will is feeling so much pain. She kind of jumped the dr. but he is doing what is best for Will. A bit of pain right now is better than weeks still in the hospital. So again we need to make an attitude adjustment. Pray for us, please.
I will try to post tomorrow. I am sure tomorrow will be a better day because of the sleep Will is getting tonight. We don't have the time that they are going to do that procedure. They just come up when they can. I am going to find passages in the Bible that will help me. Many of you have sent me great passages and I'm sure they are what I need right now. I can find comfort in His word. I just have to ask Him and then I have to listen to what He tells me. He can heal all. God is that awesome!
Thank you all for caring, loving, and praying for Will and his family. We appreciate it so much.
Will's birthday is in 4 days. I need to start warming up my singing voice.
Friday, April 11, 2008
His kidney functions are doing better. His heart didn't show any changes from last time, a few weeks ago. His lungs seem very "wet" but they are doing things to help that. They have already taken him off a few of the antibiotics because they have ruled out things with all their testings.
His blood gases are really good considering where they were yesterday. That means he's exchanging his oxygen better. They haven't had to give him anymore blood. They started him on some tube feedings again. I think that about covers everything that I know.
Things are just looking better for sure. When the drs. come around they will tell me more of what they are doing today. I will do a better job of posting this today. Angel spent the evening up here with her dad while I slept. She and I are going to hook up for lunch today in between her sessions. It was so good that she was here this week. It made it so much better for her not to be that far away when he had to be reintubated (spelling??) I just wish my sweet son-in-law was with her. But somebody in the family has to work.
The weather here is supposed to warm up considerably this weekend. I can't wait. It is always such a surprise when I go to get into my car and see snow. I keep thinking it's April and we should be having spring weather.
6 more days until Will's birthday. He has gotten a lot of cards so since we probably won't be having a party, I am going to save them all up and just read them to him that day. It will make things special.
So many of you are sending Will emails through me and I thank you for them. He will be enjoying them soon so don't quit. Keri-yours are so funny and upbeat.
God bless, hope everyone has a great Friday.
special note-Jester, that was just what I needed to hear. And you said it just right. Thanks
Thursday, April 10, 2008
PS I have lost Will's phone last week. I was hoping that I would be able to find it by now. I just don't know where it could be. So if any of you are texting or calling and leaving messages, don't-I haven't been able to pick them up. Now the tricky part. I haven't told Will yet because he's gonna be sooooo mad at me. If you need to get a hold of him, just email me at firstname.lastname@example.org
I have been saving up all the things you have been sending me. I read them to him when he's awake and then I read them to him again, because he still forgets a lot. It's the drugs. See kids, this is what happens to your mind on drugs :)
So, all in all it's been a quiet day in the ICU
Will post more later
There are a lot of reasons Will was getting worse so I won't go into them all. It just seems there are still so much fluid on board still and it looks like he has an infection starting.
He did have to go back on the vent to let the machine breathe for him for a while. His legs, which had gotten back to his skinny ol' self have swollen back up and his arms and face have gotten worse also.. I know everyone is asking why is there fluid still all over, well, they don't know. How about that?? His co2 was very high and it made him hallucinate, and he got very combative. I know, that just isn't Will, but he was sure the drs. were killing him. He wasn't very nice to them. Good thing they understood where that was coming from. Randy, you will enjoy this because Will told me to shut up and get out of his room. Sad thing was I wasn't saying anything at the time.
So today-well I guess it would have been yesterday, they put the tube back down his throat. Then they needed another central line, which is like a surgical procedure. They put it in the neck. After they put it in then they take a xray to see if it's positioned right. Well this wasn't, so they had to do another one. This time they put it high in his groin (Oh, Oh I used that word-groin-that Will doesn't like). That one worked. They needed a line where they could have more IV sites.
The drs. have since started all the antibiotics that he was on earlier. They think he might have an infection. His blood pressure has taken another drop so they started him on meds. to get that up. His sugars have been around 30 (hypoglycemic) so they probably will have to start a glucose drip. Tom would like that.
After they got the line in they wanted to do another bronch (a camera that looks down the lungs). This time they wanted to get some samples of the fluid and other things they find down there. They have been a little hesitant about that because of all the heparin he has been taken. The samples they took will take a little bit of time to get the results back.
Then they did an echo cardiogram to check to see if he has fluid around his heart. We should get the result from that this morning.
His kidneys are a little bit troubling but they already started the meds that helped last time so we should see positive results on that too.
They will have to start some more blood transfusions this morning also. So I will have to give more blood back to the bank some day.
His blood gas numbers are already looking so much better this morning than they did last night.
They have already lowered some of his numbers on the vent and he is doing just fine.
It's been a long day for everyone. They worked on him for about five hours, and out of those five hours, we spent three hours in the hall waiting. I'm sure there are things that I have forgotten about and if I remember I will put in our next blog.
Angel is up here for a math conference so she was here for the most of it then, she had to take off this evening for a meeting. She goes to the meetings from 8-4:30 then she will be up here.
Good news-he's back on the sedation and the amnesia medicine. He won't remember any of this.
I know after reading all of this, many of you are nervous. I will tell you that he is in good hands. Everything that has happened can be fixed.
This is where God makes sure that we can give it ALL over to Him. I love the poem "Footprints", I'm sure that all of you know it, but the end says when you only see one set of footprints, it's when God was carrying you. Well this is where God carries Will. He's with us all the way. Why he has to go through all this again, I don't know. I guess we aren't supposed to know. That's when the FAITH part comes in. Will is going to be just fine. As Will is always reminding us, "It will all be worth it." Please keep the faith and just continue with all your prayers.
This seems such a long blog. So sorry everyone. I will try to update you later this afternoon when we have some results back.
Wednesday, April 9, 2008
I know that some of you are upset that this is a major setback, but it isn't really a big deal. It just is a little bump in the road.
God said, "Not yet"
Remember how I said in an old blog-- God answers all prayers three ways:
2) Not Yet
3) I have something better in mind
So this is the "not yet." Will just wasn't ready for this floor. So we must be needing to go to the new floor for a very important reason. Every time a little bump in the road happens, we all get to experience God's love and mercy. His path for Will is, and has been, an amazing journey filled with God's love and miracles. What a testimony of the power of prayers also. I guess what I'm trying to do is to make all of you feel better, because I know you will be bummed about this. Don't be. We're not. Will won't let us. Besides I did all my dancing in this nice room yesterday so I don't need this big of room after all that. We will get back here real soon, I know.
Here's what has been happening. he's gained over 14 pounds of fluid in the last 24 hours. He has definitely gotten much weaker (he can no longer stand up) and he's needing more oxygen. I wish I had some answers as to why this keeps happening, but the drs. are scratching their heads also. He has been having a hard time staying awake for any length of time. Even last night when his cousin, Danny, came down to watch the game with him, he fell asleep before the overtime. He wasn't too happy about that because he knows he lost the chance to see one of the better games in a long time.
We were supposed to move over to our new home this afternoon (Tuesday) but there wasn't any rooms available. So we should be moving this morning, maybe. I will let you know when it happens. We got some beautiful flowers today from our home church to brighten up our new room. Thank you everybody. We won't be able to take them back to ICU but we will make sure someone here gets to enjoy them.
Our friend Tanya gets to go home from the hospital today. She is the other Cf person that needs to have a lung transplant. We have been praying for her everyday. It will happen soon, Tanya, hang in there.
My sweet Aunt Charlotte has finally been released from all her pain and suffering. My mom was able to be with her till the end and I appreciate all the prayers. There was a great sigh of relief when it was over. No one wanted her to suffer anymore. Her husband and son were with her also. God has a new loving angel with him now.
God is still working with Will and working with all of you that are praying so hard for us. He is an amazing God with great plans for Will. All the glory goes to Him.
I will update today sometime. God bless
Monday, April 7, 2008
Right now, he's getting another ultra sound done on his arms and neck, they just want to keep making sure the clot in his neck hasn't traveled or that he hasn't developed any more. His arms and face are still swollen and they are trying to figure out why.
We are trying to get his appetite started again, but so far nothing has sounded good to him. Maybe tomorrow. Uncle Al and Auntie are still here but they might be leaving tomorrow. They have helped Will so much. The game is still a go for tonight, if he can stay awake.
I will post more tonight. CELEBRATION TIME . Moving forward now.
If you have not talked to your family about becoming a donor, now is the time. Even if you don't have the back of your driver's license marked you can still become a donor. You just have to let your loved ones know of your wishes. Here are a few statistics:
Every year, approximately 28,000 lives are saved, 1,000,000 lives are improved and 46,000 gifts of sight are shared.
That's the power of organ and tissue donation.
More than 90,000 children and adults currently await lifesaving transplants
Every 12 minutes another name is added to the national transplant waiting list.
An average of 18 people die EVERY DAY due to a lack of available organs for transplant.
I have been composing a letter to Will's donor for a long time now. Still haven't got far. How can you thank someone for that gift. What words can describe how their gift of life has saved Will.
I need to remember every time we have a anniversary of getting new lungs, another family has to have a anniversary of death. I hope they someday they know of Will and their loved ones legacy. What other ways can we say thank you.
Will is doing better and better. He took another walk today around the nurses' desk. He still is eating pureed food, but that should change today after the drs. make their rounds. Also, he got the shave from Aaron. But I forgot my cord for my camera at home, I was going to put his picture on the blog. So I will try to get that up for you later today. I hated Angel and Aaron having to get back home. Angel does get to come back up on Wednesday because she is attending a math conference for her school up here in Salt Lake City. She will be here until Saturday afternoon. So we will see her in the evenings. I think Danny (Will's cousin) is coming over to watch the big game tonight with Will.
Hopefully we will have some news later today also. I might have an update when I put that picture on the blog.
God bless all of you that read this. I hope you recieve special blessings for a glorious Monday.
Sunday, April 6, 2008
THE VENT IS OUT
YEA, YEA, THE VENT IS OUT !!!
This is me doing a happy dance while I sing this little song. Now that is a picture for you all. Sorry.
So yesterday Will got the vent removed but he is still so skeptical that he didn't want me to blog it last night because he doesn't want to "disappoint" everyone if he had to go right back on it. But, now that time has gone by, he feels he is able to share the good news. I wanted to share it with you all last night, but after all, this is Will's blog. I go by what he says, :) (Most of the time)
These last few have been crazy. After two weeks on a vent, he's off and he took a walk in the hallway. This will amuse the people that know Will well. The dr. (resident) that doesn't know Will got to pull his vent out. He came right back in and lectured Will about not letting him down. Since he is off the vent, he needs to be working hard, not staying in bed. :) Seriously, that's what he said. Okay, enough laughter--then Dr. Cayhill (his long-time doctor) came in and lectured him about doing too much now that he's off the vent. He needs to let his body rest some. So the physical therapists came in this morning and asked Will is he wants to walk to the wall and back, he said no, he wants to take a walk in the hall, and he did. It was a long walk. It takes five people to walk him and the nurses would come out of their rooms and cheer him. It was like a victory lap. The nurses helping him walk kept telling him he could turn around any time--not Will. Then as they were getting him into bed, he wanted to know if they could come back in and walk him again in the afternoon. It sure feels great to have Will back again.
Some of you remember the goal that Will set last week, I posted it in the blog. Anyway, he said he wanted to be well enough to sit up and be drinking a Pepsi while watching the final four. I was out with Aaron this afternoon and when we got back, there was Will sitting up, drinking a Pepsi. While I was out, the lady that does the infamous "swallow test" came by and Will asked if he could try it. He passed on the first try!!!! He was sooooooooooooooooooo happy. Things have definitely turned the corner. OH, HAPPY DAY. Now that's me, singing another happy song. It won't be long until we are out of ICU.
Angel was telling me the night before she came down, she was having a hard time because she hadn't heard her brother's voice in so long and she missed him terribly. So when Aaron and she walked in, Will said in his croaky voice "hi". She didn't know he got off the vent. She cried for a long time (of course, happy tears). He likes to do these little surprises. It's his entertainment, I think. Today is the big shave and haircut day. Thank goodness.
What great changes we have seen this last week. Thank you, God. I feel the need to praise Him for all these wonderful improvements happening with Will. You all have prayed and prayed for this and He heard (in His time). All the glory goes to Him. God is awesome.
I have pictures of Will but he told me I can't put them up because of his long hair. Maybe later, a before and after.
HAVE A WONDERFUL SUNDAY, I KNOW WE WILL. Now I have to get back to my happy dance and my happy song. Love you all so much.
Saturday, April 5, 2008
We are really looking forward to this weekend with Aaron and Angel. They made it safely up here and they were both glad to see Will. Will was very glad to see them also. We expect good things this weekend. We will let everyone know.
I had another memory to share with all of you from one of Will's teachers. This was his favorite math teacher and on special days they played cards if they got their tests done early. I was always getting notes from Miss Gregg saying that Will was cheating at cards. He didn't get that from me. It became a running gag between the two. Thanks Miss Gregg for sharing this with everyone.
Here is her letter to Will:
Dear Willie (in my mind you will always be Willie as I will probably always be Miss Gregg to you),
The first thing I have thought about writing is, of course, humorous. It is probably not a good idea to try to make you laugh right now but I might not be able to contain myself. I will try to hold off until the end of this letter. So here is my teacher’s essay on “What Willie Means to Me.”
The very first day of school, on the very first day of my teaching career, we had an all school assembly in the gym where Mr. Ills introduced staff members, reviewed rules from the student handbook, and other things that I can’t remember. But during that assembly, some students (and maybe the yearbook advisor) got up in front of the school and officially announced the dedication of the previous year’s annual to Willie Harbison. They presented you with a copy and you came forward to accept it. That was my first sight of you, a frail-looking little boy. I had no idea who you were or what you did to cause them to dedicate that yearbook to you but in the days and months and years that followed, I discovered the answer.
That frail-looking little boy was not frail at all. I came to know that you had the strength of will and character that few people possess. Your willingness to keep moving forward and living life to the fullest, doing what you love to do is an inspiration to us all. My mother and I eagerly watched your high school sports career: from inspirational manager of our state champion football teams to your unfailing dedication on your basketball teams. It was fun to see you return to the sport and watch you coach in Hagerman after graduation as well. I kept up with your coaching career through Randy after I left Hagerman and am so proud of what you have accomplished. I look forward to the day I can continue to follow your coaching career because I know nothing will keep you away from your sport!
But the thing that I have always loved most about you, Will, is your sense of humor. From the first days I had you in class, I have vague memories of quips and smart remarks (nothing that required the principal’s office…). Also I have memories of you somehow winning in our classroom Nerts championship games (I’m not accusing you of cheating because we could never catch you with a short stack in your Nerts pile or with extra cards thrown under the table…). J I especially enjoyed seeing you a couple years ago when your team played at Filer and I was sorry I missed you the next time you came to Filer – the raid you and Keri arranged on my classroom had me freaked out for a while, wondering how you had gotten into my locked room! J Between you and Randy, I have had to keep on my toes over the years!
Do you want to know my clearest funny memory of you in class? Remember the free problem coupons I used to hand out? I was collecting Trig notebooks one day to correct assignments and your instructions were to staple the coupons to the assignment for the problems you wanted them to count for. I got your notebook and there on the assignment was this tiny piece of folded paper, stapled about a dozen times to keep it in place. You grinned and gave me some “reasonable” answer as to why so many staples were needed. J I think that started a host of other papers handed to me with a multitude of staples in them. So my first humorous thought after your surgery was to ask you how many staples the doctors put in you? (I told you I wouldn’t be able to contain myself….)
So what have I learned from you?
Never give up.
Life is precious.
Be grateful for each new day.
Be thankful for friends and family.
Enjoy your work.
Live life to the fullest.
This is what Willie Harbison means to me.
Thanks Miss Gregg, you touched all of us, and you have seen the real Will (cheating and all) :)
I know Will feels blessed to have you as a friend along with so many other. God gave Will so many, many friends so Will would have you all to suppport him on this journey of his. Thank you and thank God.
Friday, April 4, 2008
Will had a good day. He set his goal to sit up in the chair yesterday. The therapists had thought they would save that for another day. Nope, not Will. He wanted to reach his goal today. So he sat up in the chair for an hour. He was wiped out afterwards but it was so good to see him in the chair. He is getting stronger and it won't be long before he is off the vent. A dr. came in around midnight and said he could take out his last chest tube. Will is really excited when the holes heal up then he will be able to get off his back and lay on his side. It's the little things that makes life wonderful, right?
Angel and Aaron will be here tonight after work. That will be so good to see them. Aaron is going to shave Will again. This is the longest his hair has been. I was thinking I should braid it when he's asleep and then take a picture of it. No, I won't do that, but I know a few of his cousins would do it in an instant. It hope everyone is looking forward to their weekend as we are. This crazy weather, a few days ago we woke up to snow and today was a beautiful spring day.
Will is looking so much better. I love to be able to have something so positive to say. I have tried to let everyone know what's happening. It feels so good to be able to just say good things. He does feel so much more positive also.
I say prayers every night for all of you that say prayers for Will. God hears every one. He has really been working on Will. God has such good plans for Will. Thank you for your love.
Hopefully the drs. will let us know the time line that they are looking at for the next few days.
Thursday, April 3, 2008
He has sat up in bed three times today which was his goal and he has stood up twice. When he makes up his mind, watch out. It does exhaust him though. The drs. are pretty sure that he had a prednisone reaction. When he was put back on the vent on Easter Sunday, they had to give him a massive dose of prednisone. When you do that the muscles and nerves kind of go haywire and they like to shut down. It takes a few days after the last dose to come out of it. They are still giving him a lot of medicine to get the fluids off. They did try to wean him off a little of the vent but it still is a no go, but as he gets stronger, it will happen. So yesterday and today we are seeing improvements that should now continue to make his muscles and nerves stronger. Way to go, Will. Oh, and we got one drain tube taken out of the right side. What a day!!! He needed it.
This nessage was sent to Will via my email. I asked Kabina if I could share it with you. I was really touched with the love she has for her coach. Thanks sweetie. You're a special young lady.
Hey Coach this is Bean ;)
I just wanted to take a few minutes to tell you how much you mean to me because I don't do it enough. You are the biggest role model in my life and my inspiration for everything that I do. You have taught me to stay strong, reach out to others, and work hard to achieve my goals and dreams. You are the greatest person I have ever met. I am so glad that you decided to coach the JLT and that you let me be a part of what you do. I still remember you sitting me down and telling me I made varsity junior year. That was probably one of the happiest moments of my life, and even when I was on jv and you let me take stats and travel with varsity.
You have affected my life in so many ways and I am so grateful that I got the opportunity to meet you. This year was extremely hard not having you there in person, but as I stood on the sideline I could see you there coach...standing next to me and every time I looked, you had that smile on your face, and that got me through, I felt your spirit and your heart and as I sat the bench and cheered all season, I cheered twice as much and twice as loud just for you. ;)
Stay strong coach...keep fighting...you have the heart of a champion. I love you very much and not a day goes by, not even a second that I don't think of you. You are in my thoughts and prayers. I thank God everyday for sending you here to this Earth for all of us to meet and be touched by such an amazing and wonderful person.
Love Always and Forever
Kabina # 14
That's a special sentiment that I wanted to share with all of you. God has blessed Will with people that he has coached that cares for him soooooooo much.
Special prayers again needed for my Aunt Charlotte.
God answers all prayers. He knows what we need even before we do.
God is awesome.
I think sometime today we will hit 20,000 hits on the blog. Wow. We started it on Super Bowl Sunday. Unbelievable!
Wednesday, April 2, 2008
The courage to change the things I can
And the wisdom to know the difference.
Tuesday, April 1, 2008
Don't know what else to say except I will let everyone know when we do. Please take care on this Tuesday.
Love to all
Well, we waited for testing most of the day. I almost forgot what hospital time was all about. The tests that were coming didn't happen until after five when all the drs. went home. So now they will discuss the results this morning and then let us know. I will try to blog later today and tell you all what they decided.
Will was feeling better today. He sat on the side of the bed (with lots of help) for 12 minutes. Whoopee. It wore him out and he got a little touch of motion sickness. I guess that happens when you have been on your back so long and then try to move. So most of the afternoon he was kind of sick. But it was worth it. It felt good to get off his back. He still can't roll to his side because the tubes are still in. The drs. told him just to sit up for about five minutes, of course Will does it for 12 min.
A very nice man came and met me today. He has been on Will's blog, he's the one with the wife that has CF. Anyway, he wanted to give Will a basketball signed by a friend of his. I can't remember what his name is and it's too dark to look at it. Mike, thanks for that and the compassion you have shown. I hope to meet your wife this weekend.
Hope everyone has a great Tuesday, be careful for April Fool's Day pranks. If anyone has any great ones to share, please leave a comment. Will might get some good ideas like that.
Our God is a awesome God, he's working overtime for Will.