Thursday, July 31, 2008

Thursday July 31, 2008 12:10 am

Will slept the day away and I don't really know why. He's just not feeling well today. He did get up and walk this morning and stayed off the vent for about five hours but then he's been asleep. They will do some blood work to see what's happening with him and see if it's anything to worry about. Usually the day after dialysis is a real good day for Will. His stomach has been hurting him also, so maybe he's got a bug or something.

Today is dialysis day and Brent is coming down this afternoon. Will is looking forward to that. Also Angel and Aaron are coming down tonight. They are going to stay until Saturday. They are bringing Aaron's daughter to meet her new Uncle Will. When Candace was here for the wedding, they wouldn't let her come and see Will. I will have pictures from this weekend because Tom is taking everyone to the zoo and then I will take them somewhere the next day.

Saturday Coach is coming to visit and he's bringing Ty Jones, the athletic director at Jerome High School (Will's boss). That should be a very good visit for Will. They have a lot to talk about. I think it is so great that these two brothers take time out every week to come and see their friend. It's the highlight of Will's week.

So there will be pictures on the blog soon.
God bless

Wednesday, July 30, 2008

Wednesday July 30, 2008 2:30 am

This was a typical dialysis day. He felt terrible because his toxins in his body are building up. That's why dialysis is so important. He felt sick all over until after dialysis and then he feels tired. He slept for about 9 hours after the dialysis was completed. Then he walked to the door and we put him in the wheelchair and took him around the unit for a ride, just to get him out of the room.
Tomorrow should be his good day and he'll feel like walking more and getting off the vent. Today he was off for only 2 hours but he just wasn't feeling like doing more.

We did have some visitors from the ICU unit that wanted just to come up and say hi to Will. He was asleep but it was nice of them to take time off to come up and see us. We still miss them lots but there is a good bunch of people up here also, we just aren't getting close to them like we did the other floor. The young man, Moreno, that we have been praying for is still up here also. We saw him up in the halls earlier today. He's looking better.

Tanya, our good friend that has CF and is awaiting a transplant, is back in the hospital again. I know, she just got out but I think it's the lousy air quality that we have right now. Anyway, she needs your prayers and pray that they find donor lungs real soon. She's a tough cookie with the sweetest smile and beautiful heart.

God bless and thanks for the continuous praying for us. Our God is an awesome God.

Tuesday, July 29, 2008

July 29, 2008 Tuesday 1:40 am

It was a good Monday. No dialysis so Will got up and walked two times, both time to the double doors which is about 92 steps. That's so much farther than he has been able to get. The occupational therapist, Lindsay, had Will stand at the sink and brush his teeth. He did all right with that. He was tired-isn't it amazing the things we take for granted. We don't have trouble brushing our teeth several times a day and when Will does it-the task makes the blog. But it is big news, anything that is more like his normal days is so good for him. He did 10 hours off the vent today also. So it was a good day.

Dialysis day is today. We will see what the day brings.

I'm not going to write a book today. I hear the applause clear up here.

God bless

Monday, July 28, 2008

July 28, 2008 Monday 12:50 AM

This is a great day for Will. He took two walks and the last one was farther than any other time up on this floor. He also stayed off the vent for 11 hours!!! It’s been a long, long time since he was able to go that long. The docs are still trying to find an antibiotic to work on that infection, the last one doesn’t seem to be working. But, he is really doing better. Whoopee!

I’m sorry that this blog is going to turn out to be almost a book. Everyone knows how I can make a short story long. SORRY.

This is a little explanation what has been going on this weekend. I snuck home for a couple of days and worked in my classroom. There was so much I needed to do. I know some of you didn’t know but I am going back to teaching this year. This was not a decision that was made lightly. I was making myself sick trying to decide what to do. I knew that I couldn’t ask the school district to hold my job more than they already have. It’s not all about the paycheck although that was some of it. So it was time to either go back or let them hire some one else, and time was running out because they would have had to find another teacher and that’s not easy. As any one of you know that Tom and I and his whole family would do anything to get Will better and get him home. With that said, we needed to know what to do.

So of course I did what everyone should do when they come to such a hard place. I prayed and then I prayed some more. I just wanted God to send a sign to make it clear what we should be doing. The next day I received a book in the mail signed by all the employees of the school district saying that they wanted me back. I got a call from my boss saying that he was coming up to see us and Will was getting ready to be transferred up to the intermediate intensive floor, which meant that he was doing better. We felt that that was the way God was sending us but then Will clinched it when he told me that he wanted me to go back and teach. He said everything would be all right. Well, with all those “signs” God was sending our way, the decision was made.

Okay now comes the true test. Jump off the cliff. No, not for real-that’s just what it feels like. We have no idea what’s going to happen to Will in the next few weeks or months. All we know is that God will provide everything we need to take care of Will. Are we nervous???? You betcha, but our faith in our Heavenly Father is great and when He gives us these trials, He also gives us solutions. We trust Him and I hope that all of you that are reading this understands when we really do say we have no idea how we are gong to work this. One day at a time, I guess. LET GO AND LET GOD

I know you all read this blog for information on Will and a lot of this is about me but I wanted everyone to know that we didn’t come by this decision lightly. I will started teaching in about three weeks and it makes me very nervous just saying that. But and this is a big BUT, Will will have everything he needs.

It was nice to be home for a couple of days, it almost felt unreal. I feel bad that I couldn’t see all my friends but I needed to get all my stuff done. I feel bad that we had to “sneak” around but I hope you all understand. And while I was gone, our good friend Kim did my “shift” and she was great even though the nights had to be so long for her. Tom did his normal days so we had Will covered. Richard and the kids stayed at the apartment and just hung out. How wonderful it is to have friends like that. THANKS WHITE FAMILY.

God bless everyone and thanks for reading this all the way through.

Sunday, July 27, 2008

July 27, 2008 Sunday 12:40 am

Sunday is the best day of the week. I wish all of you "bloggers" are enjoying yourself. Do something special just for you.

Will's Saturday was good. He had the best visit from Coach and Will's good friend from high school, Jason Warr. They came up to Salt Lake together and stayed for about three hours. They talked and had a great time. Will even stayed awake through it even having just had dialysis. He was looking forward to it all week.

They took two liters off today in dialysis. They keep track of his blood pressure during dialysis and when it starts dropping too low then they know that his body can't take any more fluid off without compromising his heart. Isn't that interesting? Bet you all didn't know that and it could be on the "end of hospital test" so take note.

I guess I should have said most of the day was good for Will. Those antibiotics that he started taking day before yesterday for the blood infections turned out that he is allergic to. So he itched all over all night long and most of the morning. They can't give him something like benedryl because that impedes the breathing process. So they searched to find something to use. The great doctors found something but I can't pronounce it so I definitely can't spell it. It does seem to be working though. He's finally able to sleep. He should sleep all night long now.

Kim and Richard White and the two great kids are still down today in Salt Lake and will go home tomorrow. They have been such fantastic friends to us through this all. How blessed we are that God allowed us to build our house right next to them. Little did the White family know when they sold us that land what they were in for. Friends are everything---well, no, family is everything----but right after family--friends are everything. Thank God for both, friends and family.

God bless

Friday, July 25, 2008

July 26, 2008 Saturday 12:15 am

The weekend is here. I can hear the celebrating, I think everybody was ready for the time off.
Will did pretty good today. He walked twice and stayed on the trach mask for 7 1/2 hours. That's so much better than what he has been doing. The only thing growing out of the blood culture is that strep b. They have already started treating him for that. They also found another bug and it could have been causing him to swell even though the dialysis is working. They have started him on another antibiotic for that bug. Dr. Cahill, the sweet, patient, caring doctor she is said that within 24-48 hours he should be feeling better---then she told Will that's all the "bumps" so maybe Will will listen to Dr. Cahill since he won't listen to me.

Tom came back this morning and Angel left this afternoon. Revolving door around here. Just kidding. It's 104 here in Salt Lake today. HOT!

Kim and Richard came up for the weekend and are spending it visiting the Harbison family. That's so nice. We had a good visit today with Carrie and Judy. Tomorrow(or today however you look at it) will bring Coach and he's bringing a high school buddy, Jason Warr to see Will. They will sit around the bed and talk basketball or some other sport until they all run out of breath. Will's so ready for that. So tomorrow will be a great day even with the dialysis.

I hope everyone is spending time with their family on this wonderful weekend. Have fun and laugh a lot.

God bless

July 25, 2008 Friday 12:45 am

Well, I survived our first Days of 47. I don't think Angel did though. She came up the wrong street this morning to get to the hospital and couldn't get through the parade so she turned to go around and she couldn't find a street to get through. Then she turned to go the other way and it took her 20 minutes to find a road that let her through. She was so mad, and it was sooooo funny because all she would do is call me and yell. Like I was supposed to do something about it. So when she called all I could do was laugh. That might be the reason she was mad, I don't know. When she got up here she started seeing how funny it was.

Will walked this morning before dialysis and then he did the dialysis and rested. But he stayed awake a lot more today than he has been. Angel and her brother had a good time. We had a great RT that came and took up for a wheelchair ride to see the fireworks out of a window on the other side of the hospital. They were beautiful but we didn't get to stay because Will was having a little bit of trouble breathing so we needed to get back to our room, but we got to stay for about 30 minutes. It was nice to get him out of the room. We still haven't heard from the last blood culture. We should know tomorrow.

Friday should be a great day, and he is getting stronger. Thank you for the prayers for my niece yesterday. She is doing better. Judy Osborne and Carrie Chisum are coming up today to visit. That will be lots of fun to catch up with them. Coach and Jason Warr are coming up on Saturday for a visit. Good times.
Tom will be coming back today. Yippee. Angel will leave today, so sad.

God bless

Thursday, July 24, 2008

Thursday July 24, 2008 1:48 am

Today is the Days of '47 here in Salt Lake City. I don't quite know what will happen but I do know they have fireworks tonight all over. Lagoon has them and so does Sugar House. Our youth from our home church are coming up to Lagoon tomorrow for two days so they will be able to experience the festivities. Then all the nurses are telling me that it isn't a good idea to be on the roads because there are so many parades going on. I guess the safe place is to stay in the hospital. Maybe we can escape from the room and find a good window to view the fireworks. That would be fun.

Some of Will's tests aren't back yet but they should be tomorrow. It did grow out some strep in blood but that's not the same kind as we get in our throat (maybe the same family of bug??) He will have dialysis today and they want to take another 4 liters off. Today he did walk out in the hall once but then he's been asleep most of the rest of the day. Angel is kind of disappointed because he's not in the "visiting" mood. They did watch the Mets game tonight and then while he slept, Angel and I watched a "chick flick." It's so much fun for us when she comes up. Will gets so bored with just us. She'll go home on Friday and then on Saturday Coach will come up.

Some of you remember my niece, Missy, needing surgery to fix the one remaining kidney she has left. They did that today and I feel real bad because I thought it was tomorrow and I was going to ask for prayers for her. Well, she made it through surgery just fine and now she will be in the hospital a few days then home. They think they found all the kidney stones and got them out of there. It was a weird surgery because they went through her back to get to them and it was a four hour surgery. So she could use some healing prayers. Thank you for those.

Well, pray for those blood tests to come back negative so after dialysis Will can just rest and then he can get up and running. Maybe not know what I mean. Tom called me tonight from home and I asked what he was doing. He said he was just sitting on his horse enjoying the peace and quiet. He really needs to get home more often. He went to a church picnic and saw quite a few friends (especially the ones with babies). Lots of fun there.

God bless

Wednesday, July 23, 2008

July 23, 2008 Wednesday 12:09 am

Tom mainly came home to put up the hay that was cut this week. This is Tom with his hay crew. They are just starting out. The kids are really excited because they get to drive the truck in the field. Riley and Hayley are the best workers you could ask for. THEN:

This is what Tom looked like after they got all the hay stacked. Big change huh? Riley still looks happy because he got to ride inside the truck. The White family helped Tom and they got it all stacked before the rain came. What good, good friends we have been blessed with. Thanks Whites.

Well, today is our five month anniversary for Will's new lungs. I don't know if we say happy anniversary or has it been that long???? I really thought it was much longer than five months. Please remember the donors family in your prayers tonight as I do every night. Thanks

Today they did dialysis and they took off 4.5 liters. That's just about 10 pounds of fluid. It helped but not enough so they will take off some more either Wednesday or Thurs. He still is very puffy. This will definitely help his breathing. So today should be a better day. Tuesday he slept. I think he slept almost 30 hours with just a few minutes waking up. I did talk him into standing but it just lasted for two minutes. He just couldn't do it. But today we will see a huge difference I hope

Will's blood cultures are starting to grow something so they gave him a bolus (new word here) of antibiotics. We should know this morning what is growing and how to treat it.
A bolus is another word for a big amount to start with. A lot of times they give a bolus of antibiotics and then level off with a smaller amount. Sometimes they do a bolus of pain meds just to get on top of the pain and then level off. So there's another medical term all you bloggers just learned. Don't forget there will be a test at the end of the hospital stay. (just kidding coach). They did a few other tests also so they all should be back this morning, but remember kids, this is hospital time so maybe by midnight tomorrow night I will have answers-hee hee.

So please pray that what ever is growing won't be too serious. Thank you
God bless

Tuesday, July 22, 2008

Tuesday July 22, 2008 2:20 am

Angel is coming up this morning and Tom went home for a couple of days. He had to put the hay up and a few other things that needed to be done around the place. It will be good to see Angel and Tom is really excited about being home. The first thing he did when he got home was go "talk" to his horse. Sometimes I think this man needs help.

Will's day wasn't as good as it should have been. He was more tired today and they have been taking a lot of tests. His white blood count is elevated which means they need to check for infection. So they did blood gases and blood cultures, xrays, and other checks. We should be getting some answers today. Today is dialysis also so the doctors usually don't make it by until after that.

I will let you know how things are going. Please say a prayer that he doesn't have any infections now. God hears us, every little prayer, and he delivers in his own time. Thanks for all your support.

God bless

Monday, July 21, 2008

Monday July 21, 2008 1:40 am

Around Salt Lake City they get really excited about the "days of 47". I guess it's a three or four day event. They have rodeos, parades, and even fireworks. That will be all this week the nurses told me. So I will have to try to experience some of this.

Will did some good walking today. He walked 34 steps in the morning and then more than doubled that in the afternoon. It took so much out of him, I can't wait until he's able to get around like the good old days. He just has to work to get his muscles and nerves back to where they were. He did get to listen to the Mets game on the xm radio. He enjoys that satellite radio so much. That was a good investment and we want to thank Coach again for that.

We are slowly getting to know the nurses here. They seem to be very nice and have fun personalities. It's still not anything like our "home" on ICU. We miss those people a lot. I told Will that we don't have too much more time until the end of the month--his goal for getting out of the hospital. We better get a move on. He doesn't have dialysis until Tuesday so tomorrow will be another good "movement" day.

God bless

Sunday, July 20, 2008

Sunday July 20, 2008 3:05 am

Happy Sunday to you all

Dialysis started Will's day very, very early. They did take two liters off though. That means the rest of the day is spent sleeping. So that was our day. Very quiet. The doctors all came in and said he was doing well. So I don't know what else to say. One of those times I just don't have much news.

Today we will get him up several times for a walk. He should stay off the vent for quite a while today also. Hope everyone has a great day before the work week starts.

God bless

Saturday, July 19, 2008

Saturday July 19, 2008 12:05 am

I thought I would start this blog out with a funny. Our good, good friend Keri Peterson sends Will a letter a day. She puts a lot of thought into each one and sometimes when I read them late at night I laugh so loud that the nurse will come in and want me to share with her what is so funny. Well, she thought this was very, very funny and I thought I would give a laugh out there. Laughter is, after all, the very best medicine.

Why ask Why?

Why do they lock gas station bathrooms? Are they afraid someone will clean them?
When it rains, why don't sheep shrink?
Why is the word abbreviation so long?
Why do people who know the least know it the loudest?
If a turtle doesn't have a shell, is he homeless or naked?
Should vegetarians eat animal crackers?
If the cops arrest a mime, do they tell him he has the right to remain silent

I hope you all are laughing so hard right now. You're welcome :)

Today was a better day. Will had his treatment very early this morning. Then about 10:00 am Randy and Brent Clark walked in. Under normal circumstances they would be taking their own lives in their hands. But Will was already awake. whew. He had a really good visit and it was so good to see a smile on his face. Those two keep Will laughing, well at least smiling. Sometimes we go days without seeing a smile so these smiles are so welcome.

Because of the last week's "bumps" Will is so tired still. Well, he slept for a few hours while they were here. He felt so bad but he couldn't keep his eyes open. Brent and Randy didn't mind even though they drove all the way down just for a few hours of visiting. While the guys were here, Tom and I went to lunch at Sizzlers. TOGETHER. Then we walked around Smith's for a while. We went totally crazy I know.

Tomorrow he will have dialysis and take a few liters of fluid off. He already walked twice today and that was a biggy. In the morning he was able to make it to the door of his room. BUT in the afternoon he walked down the hall a little ways and back without sitting down in the wheelchair. What a difference. As you can see, Will is back and going strong.

Here is a good passage from the Bible that fits today;

Psalm 9:10-12

The LORD is a refuge for the oppressed, a stronghold in times of trouble.
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.
Sing praises to the LORD, enthroned in Zion; proclaim among the nations what he has done.

We are definitely singing the Lord's praises. He has been doing wonderful works in Will's life. We know He will continue to do so. Thank you Lord for helping Will through this last "bump" and we pray that it will be one of the last "bumps". AMEN

God bless

Friday, July 18, 2008

New Look July 18, 2008 Friday 1:20 am

Kim told me that my blog was looking boring so I decided to try to spice it up a little. I might change it often now that I know how. I hope you all enjoy it. I finally figured out how to put a picture on it.

Today started with Will going downstairs to the GI lab and getting another feeding tube put in. This one was done by the head dr. (I don't mean a doctor for the head, I mean the main doctor). He told me he put it in 40 cm further than the last one. Tauna (head transplant nurse)went into the room with him. Maybe that kept them on their toes. She's very protective of Will. This one is in for sure (I think). They started feeding him this afternoon a little at a time just to see if it's going to work. So far, so good.

During dialysis today he got a couple units of blood. He was needing this transfusion and now he should be getting some of his strength back shortly. He slept the day away again. But he won't be today. Today Coach is making his weekly trip down to see Will. Coach is retired so I don't know how he is paying the gas prices but I won't ask because when Coach or Brent come down it seems like one of Will's weekly highlights, come to think of it, it might be his only highlight. Coach will be making Will run his usual lines (not really, it just feels like it to Will). Brent will be here either tonight or tomorrow. So Will will be getting his walking in for sure.

Now we should be up and running again. Dr. Cahill came in and told Will to start working hard again and he could still make his goal of being in his apt. by the end of July. I was shocked because I know this last week has really knocked Will back on his bu......I mean posterior. (G-rated blog at all times). God is awesome in what He is doing in all our lives.

God bless

Thursday, July 17, 2008

Thursday July 17, 2008 12:34 am

It's the middle of summer already. Wow! I know the weather is getting so hot everywhere. I hope all our readers are finding a way to stay cool. I know our church family are going camping this weekend for the yearly church camp out. With gas as high as it is, I hope people get to go. Next year we will be going with them.

Will still had a tough day. For some reason the feeding tube is still not working. The head dr. from GI (stands for gastric-intestinal, I think) will come up and fix it tomorrow some time, probably after the rest of his cases so it will be in the late afternoon. Will does have dialysis but we never know when they take him. There is no schedule.

Will did take a short walk this morning about 9:00. I know, you are probably all saying that can't be Will because he doesn't do anything before 11:00 am. He just wanted to get it done early which was a good thing because for the rest of the day he's been asleep. He didn't even wake up when his cousin, Danny, came to see him. I think all of this is just from lack of nutrition and once we get that all fixed things will be up and running again. He stayed off the vent about 6 hours today. Will's still trying to do as much as he can. He's amazing.

The young man, Moreno, is back down to this floor again, remember last week he had a set back and had to go back to ICU. He's looking so much better and I want to thank you so much for the prayers you have been saying for him. He's got such a great smile. He's got a trach in also so I can't talk to him but he smiles all the time. Someday I would like to ask him if I could take his picture so I can put it up on the blog so you all can put a face to your prayers. I think Will has the best blog readers in the whole world. Anytime we need prayers, we get 'em, even for people we don't know. We thank God for all of you.

God bless

Wednesday, July 16, 2008

July 16, 2008 Wednesday 12:30 am

I thought I would put this on the blog so we have something cute to look at.
This is Candace, Aaron's daughter and their puppy. Angel is loving being a step-mother.

We will just put this day down as "thank goodness it's over" because that's how it was. Will had a terrible night and then he just felt awful all day. I am sure almost all of his trouble is because of the tube feeds not being on. His headache hasn't left yet either but he has gotten his meds back in the feeding tube so that means he can have some pain meds that work. He has been sleeping most the evening and hopefully he will sleep through the night. He needs the rest. Then tomorrow he will be so much better.

We will plan to get him up and move him several times today . He wasn't able to get up yesterday, if fact, the dialysis came to his room instead of us going downstairs. We take his bed and everything when we go down to dialysis but he can't go down on a vent. He needed his vent all day today so he couldn't go down. Which was good for today. They took off only one liter of fluid.

Everything will be improved by the time he wakes up in the morning. God has His reason for all this and all we need to do is just put our trust in Him. Good things will come.
God bless

Tuesday, July 15, 2008

July 15 2008 Tuesday 12:45 am

Will got his jg tube in place tonight. He was in the GI lab from 2 this afternoon until 7. That was a long procedure and he was hurting so bad when he got back from laying on a gurney all that time. They are just now able to get a hold of his pain. He still can't use his feeding tube until this morning hopefully. They have to xray it about 5 this morning and see if it "floated" anywhere. I asked the dr. if they could use some duc tape to hold it into place this time. She laughed but I told her Will was from Idaho so it was ok-we use it for anything. They had to put it in three different times today. Will wasn't a happy patient towards the end. He might not be able to talk but he sure can give people the look.

He does go down to dialysis this morning. I still don't know if they are going to take any fluid off. Maybe the kidney drs. came while we were downstairs. I didn't get a chance to talk to them today. Because he hasn't had any nutrition for a couple of days he is pretty weak. So he did try to walk but didn't get very far, although he walked farther than I would have. He has also had a headache all day and that's probably from lack of nutrition. This tube better work this morning or I'm making him some pancakes and stuffing them in his feeding tubes.

My mom left this morning but it was sure good to see her. She got to walk with Will yesterday and this morning. Please pray for some relief from his pain and pray that his tube will work now. He needs food!!! Thank you for your love.
God bless

Monday, July 14, 2008

July 14, 2008 Monday 1:05 am

Monday morning-I hope everyone is excited about the new week. I know I am. Great things are going to happen. I just feel it.

Will didn't have a great day but it was better than yesterday. He did get a walk in and Grandma got to pull his IV pole. Way to go Grandma. I think she was going to pull him out to the parking lot and into her car. Today, Monday, he should be getting his tube fixed. It's been a long weekend without it. I don't know how they will fix it this time because last time they fixed it, it just came out again. So we will see. Will did do his t-trial for almost 12 hours. Great work for someone not feeling well. He will do dialysis on Tuesday, Thursday and Saturday this week. We don't know yet if they will pull any more fluid off him or not.

God bless

Sunday, July 13, 2008

Sunday July 13, 2008 7:15 am

Sorry I am so late with this. It was one of those nights where I thought I had done it already and I didn't check. I hope I didn't have anyone worried (Kim).

Yesterday was a rough day for Will. It started too early for him with dialysis. They did take FOUR liters off which made him feel better with his breathing. Right before he went down the nurse noticed that his GJ tube came out. That's the tube inside his stomach tube that is threaded down to his lower intestine for his feeds and medicines. This is done so he can't aspirate it into his lungs again. So they worked on it-several different times by several different doctors (all thinking they have a better way, bless their hearts). By the time he was done with dialysis, he was so worn out and feeling sick. Then he had no way of taking any of his meds, so Dr. Cahill tried to get the tube down his nose but it wouldn't go. I don't know why. Now we are about five in the afternoon. They couldn't put another one in unless it's life and death because they have to call the surgery team in. It isn't life and death but to spend two days without meds and feeds can be dangerous. They were able to convert some of the most important meds into IVs and they can give them to him like that. So that's good but he doesn't have any way to get nutrition. But Monday they will take him in as soon as they can.

I just wish Will would quit doing this the hard way. So does Dr. Cahill. Today we will still try to get him up and walk. He wasn't able to walk yesterday but he did do well on his trach trial-10 hours-so that's gooooood. Maybe the walk will make him feel better.

Monday should see things improve. Pray for that please. I hope everyone has a great Sunday spending time thanking God for all the wonderful blessings he has given us all. We are sure blessed here.

God bless and thanks for the prayers

Saturday, July 12, 2008

July 12, 2008 Saturday 1:45 am

I don't have any pictures today but I hope everyone enjoyed the videos from yesterday.
Will has had a very busy day. He had xrays downstairs on his lungs. Then Dr. Cahill decided to do a bronch. This last week, Will has started bleeding out of his trach again. Dr. Cahill wanted to make sure there's not something real bad happening. She was very pleased with what she found down there. So that shows her that there is probably fluid surrounding the lungs again. Tomorrow they will do dialysis and take a couple of liters of fluid off and see if that will make breathing easier again. they haven't taken fluid off all this week.

Coach and Donna came down for their weekly visits and they were in the room for the bronch. They got to see the inside Will's lungs. They were feeling like I did the first time I got to watch-just amazed what we were looking at. Will even got a few foot rubs from Donna. I am sure glad we get company here so we don't have to do all the foot rubs.

Before all this, Will did walk today and his aunts got to go with him. (They went back to Idaho after that) He walked 70 steps, I know that this isn't as far as he has been doing but he hasn't walked very far for a couple of days. But because of the bronch he didn't get to walk the second time until much later in evening. Coach wanted to stay to see him walk but with all the happy juice that they give Will during the bronch Will slept until 9:30 tonight. So tomorrow we should see Will's breathing get easier and then maybe he can stay off the vent for a long time. Then he will walk farther too, right?

Tomorrow Will's grandma, my mom, is coming up for a visit. I think she is bringing me some home-cooked food. I'm so excited (to see my mom and yes, for the food too). She will stay a few days with us. Tanya, our CF friend that is awaiting a transplant, went home from the hospital and I pray that she gets to stay home longer than a few weeks. The air is so bad here right now from the California fires. I also pray that she gets her new lungs soon. I hope everyone has a wonderful weekend.

God bless

Friday, July 11, 2008

July 11, 2008 Friday midnight

My niece Billie, put together this video of Will's walk while she was here last weekend. I hope it works for everyone. It worked for me but I had to push the big arrow on the picture and then I had to push the little arrow under the video. I hope you enjoy seeing him. My nephew, Danny, is the one helping, or pulling on him, I'm not sure which it is. Isn't it great to see him moving around. Billie told me she would tell me how to upload these videos and I will try to get a camera and get some more for you all to enjoy.

Here's the video of Will and his namesake. Aren't they great together. Both smiles are so treasured by us.

Will had another bad day but this will be the last one for awhile.
It started out with dialysis because his kidney numbers were getting worse and he had a terrible night itching all over. The itching comes from all the toxins in the body trying to get out through the pores since the kidneys are not taking them out. I hope that makes sense? They really couldn't give him anything like benedryl because that is for allergic reactions and that's not what was making him itch. So we just tried to rub the itch away with ice bags.

Then while we were down in the dialysis lab his feeding/drain tube pulled out. This is something that was put in by a procedure down in the intervention xray lab, it's not something that could be put back in by us "normal" folks. So we had several drs. and nurses running around trying to figure out what to do. Will couldn't take any of his medications without that line and he couldn't have his tube feeds either. So it was quite serious and at first they said they couldn't get him in until tomorrow morning but Dr. Cahill said she gave up her ranch to the dr. so he would do the procedure early just for her. Wasn't that nice of her? She can always come live with us in Idaho.
I don't know if I have mentioned Dr. Cahill's assistants, Kelly and Tauna. Those two never miss a day of coming in and checking on Will. If we need anything, and I mean anything, they find a way of helping us out. So when Will's tube was pulled out this morning, within a few minutes Tauna came walking in. She got things straightened out. They are both amazing and they know everybody so they have a lot pull around here. We love them both so much. They just brighten up the room when they walk in and they always have time to answer the thousand questions that we usually have.

So Will didn't have any walks today and he was on the t-trial for the three hours he was downstairs on dialysis. But tomorrow will be different because it's Friday (already???) and Coach is coming down. He will get Will up and walking. Will's two aunts, Aunt Karen and Aunt Gloria, came up this afternoon and will stay overnight. They haven't been able to see him in quite a while. It was good to see them.

Pray for Will's kidneys if you would please. We want them to recover and start working again so he doesn't have to stay on dialysis permanently. I will have good news tomorrow because Dr. Cahill said that this is the absolutely last bad day. And we all know she's the boss, and we thank God for her every day.

Hope you all enjoyed the videos. Let me know.

God bless

Thursday, July 10, 2008

Thursday July 10, 2008 1:00 am

Will wasn't feeling well again today. Dr. Cahill came in and said that with all the "good" days he has been having that a couple of rotten ones don't mean too much. She did warn him that today was the last bad one he gets. Will agrees and so we will start Thursday off and running. Things will be better.

He didn't have dialysis today but he was still exhausted so he walked twice but not too far. He was having trouble staying off the vent so he stayed most the day on the vent. They did take him down to do an ultrasound on his kidneys. We will have the results tomorrow/today. They also did a blood gas and we will get the results tomorrow/today. They also took an xray of his stomach to see how things are looking there.

Please pray for Will's strength to come back today. Hopefully he will be able to breathe a little easier and then he can continue with his "good" days. We got kind of used to his little smiles again so we don't want to go back.

God bless

Wednesday, July 9, 2008

Wednesday July 9 1:30 am

Today was a resting day. Will wasn't feeling too energetic and that's to be expected sometimes. So he was able to take today off. He did have an xray and Dr. Cahill was very pleased with how his lungs are looking. He walked a little bit but other than that, he slept. He didn't go down to rehab on the bike but they will try to get him to go down on Thursday. The kidney drs. said they might not do dialysis today. We will see what his blood work comes back with. They might be able to give him a break from it until Friday. Today will be a better day for sure.

I wanted to share this picture with you all. My daughter's stepdaughter (in the towel) went to church camp today. They were supposed to be praying. How cute that is. Carson, the little boy next to Candace is trying so hard not to peek, but he is, so Candace decided not to let him look at her. The other kids are just not with it yet. Isn't that a sweet picture. Kids are just the most precious things in life.

God bless the little ones and God bless the big ones too.

Tuesday, July 8, 2008

Tuesday July 8, 2008 12:22 am

Will's day started so early and for those of you that really know Will, he just doesn't do early. They got him up and told him that he had about 10 minutes before he had to go downstairs for dialysis. I know Dr. Cahill was going to try to get them to take Will in the afternoon so that he could exercise and walk in the morning. She just didn't have time to get the arranged. It takes about three hours and another half hour for transporting. So he wasn't up to much walking or anything else today. He just kind of slept the day away and he's still sleeping tonight.

Tomorrow they are going to get him about 9:15 and take him down to rehab and let him try the bike. That will be a good indication if he's ready for some different types of exercise. I hope he can at least do a few minutes on the bike. We need to do everything that we can do to make Will's life feel normal. For months now his life hasn't been even close to normal.

We had to move rooms again. They needed us to move across the hall because they are more set up for a vent than in our other room. Now we don't have a beautiful view of Salt Lake City. We have a beautiful view of a brick building, but if I look closely I can see people in the windows of their offices. That sounds terrible, I hope I don't get arrested. We have been getting many of our "old" nurses from ICU visiting Will the last few days. Mama Bear, Aka Carolyn, hasn't missed one day visiting with Will. See how blessed we were with the "family" of nurses that we had. It is so good to be able to see them. I know we won't ever be able to forget them. They were so good to us.

Speaking of that, we did get one of Will's favorite nurses from ICU to float down here. It was Sumer!!! What a surprise that was. She never gets to float to this floor and to have Will as a patient was a great coincidence. I hope they all can float down here at one time or other.

So tomorrow, or should I say today, we will try to get him up walking and exercising a lot to make up for today. Oh, I forgot to tell everyone---The young man that I had you all praying for in the ICU, Moreno, was moved down here the same day as Will. Isn't that great! He looks so much better, I think he only weighs 90 pounds though. His mom gets to come see him once a week on Sunday (I don't know the circumstances of that) and I talk to her. She seems so relieved about his progress. I have been telling her that we have been praying for him. She was so grateful. Please continue to hold him up in your prayers, and don't forget our Tanya for her new lungs. Thank you for all your prayers.
God bless you all

Sunday, July 6, 2008

July 7, 2008 Monday 12:15 am

The picture above is with Will's cousin, Billie and Matt, my buddy (also Billie's husband). They were so excited to see Will this weekend. Just in the time they were here, they were able to see how much he has changed. Everyday is something better and better.

The picture below is when Sadie decided she liked "Uncle" Will well enough that she will bestow a kiss on his cheek. It was so cute. They left about two this afternoon.
Now the big news, the drs. decided since they are suctioning everything and anything out of his stomach all the time, that it wouldn't hurt for him to have a little Pepsi every now and then. Will could hardly wait for the dr. to get out of the room before we had to run and get him one. Look at his face. He was in Heaven.

Angel and Aaron had a great time this weekend when they took Candace camping. I will have to put some pictures of that up on the blog too when Angel sends them to me.
Dr. Cahill said that she thinks Will might just meet his goal of being in the apt. by the end of July!!! What great news. Then it won't be long when we will be bringing him home. It just doesn't seem real.
While Billie was here she took some videos of Will walking and stuff. She's going to edit some of the video and then I will give her my code to get on here and she will upload them to the blog. You will be able to see him moving. Technology is amazing.
Well, our life is looking so wonderful and we hope all of you are having a wonderful time too. God just keeps showering all our friends and family with such great blessings.
God bless

Saturday, July 5, 2008

July 6, 2008 Sunday 1:30 am

They say pictures are worth a thousand words and these are--

This is Will's little cousin that was named after him--Coby William. We finally got to meet him.

The hospital staff let us sneak him and his family in to see us. (Notice the outfit)
and notice the smile on Will's face. Priceless.

Below: Tom is carrying little Sadie Kay, she's three and Will used to be her favorite but she didn't want anything to do with him because he was in the bed. She just didn't understand why he couldn't talk to her and play like old times. We told her it won't be long.

Baby's smiles are God's special blessing on us all. Who can resist?

Coby is just fascinated with all of Will's machines. He didn't mind laying in bed with Will.

This is Billie, the mom, Sadie, the Princess, and Coby all entertaining Will.

Coby just couldn't quit laughing. He thought Will was funny.

Here's Uncle Tom trying to get Sadie up on Will's bed. It didn't work, but Coby thought it was fun. This is a good picture of how good Will's looking.

Nothing but good news. The visitors have been helping. Having kids around has helped us all feel soooooo much better. That's what we all needed. And all the doctors are really making us feel so good. We missed Dr. Cahill again but Brent and Stacee were here when she came in. They said she just couldn't quit praising Will's progress. Dr. Cahill even wants Will to try rehab on Monday. She wants him to go down to try to get on the bike a little bit. I guess it just depends on dialysis. This is so exciting considering less than two weeks ago, he had trouble lifting his arm off the bed. God is doing such wonderful things in our lives.
This verse I wanted to share with all of you. It is from Isaiah 40:31:
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Is this not perfect for where Will is right now??? We waited on God's perfect timing.
Our God is an awesome God. I just can't say this enough. We thank God for the work He is doing in all our lives. I hope everyone enjoys their Sunday and worships the ONE that loves us the most.
God bless

July 5, 2008 Saturday 1:09 am

We have now been here a whole day. This is a nice room. Some of our old nurses have been up to see us. The nurses here seem to have a sense of humor so that's good when they are dealing with us. I didn't get to put the pictures up on the blog because I have to do that from our computer at the apt. So I should be able to do that today.

I hope that everyone enjoyed their Independence Day celebration. The freedoms this country has offered all of us is a great cause to celebrate. How blessed we all are to be here. I couldn't see the fireworks from our window, even though the window is very big.

We had more visitors today. We love that. The Clarks came back up this morning and visited. Then my superintendent, Kevin Lancaster, and his wife and son came up to visit us on their way through town. It was so good to see them. Will told Kevin he needed to give me a raise to help pay for the hospital stay. Since the stay in the hospital will probably cost way over one million dollars, it's going to be a BIG raise. This is the way that I know Will is getting better. His sense of humor is coming back. Thank you, God.

Then after the Lancasters left, my neice, Billie, her husband, Matt, Sadie Kay, and the new little baby, Coby William, came to visit. This was the first time to meet his little namesake. This little boy is so beautiful, sweet, and happy. Little Sadie cracks me up. She didn't really like Uncle Will this time. Usually Will is her favorite but he was in the hospital bed and couldn't talk to her. So that was strange for her. We did take cute pictures. They are coming back today to visit more. We will enjoy every minute.

Will had a dialysis session today but they didn't take any more fluids off. The drs. were satisfied with the results they have. Not to say they won't take more fluids off at a later date. He didn't get to have it happen at his bedside. He had to go downstairs with a few other people. Will said he didn't like it because it was really boring for the three hours of dialysis.

Well I will pray for traveling mercies on all who are on the road this weekend. Kim and Richard are home tonight. Their trip was very nice.

God bless

Friday, July 4, 2008

Fourth of July Friday 1:43 am


This really started as a good day. Around midnight the drs. decided they could safely move Will off the ICU floor and put us on the intermediate intensive care unit. It's one step down and the rooms are all brand new. It is really nice, but we are so sad. We didn't want to leave the floor after 17 weeks up there. We have made such good connections with everyone there. They are like our family. Seriously I did have to have a little pity party for myself. I love everyone up there. But, it is a very good step forward in Will's journey home. So YIPPEE!!!!! Will's going to make his goal to be back in the apt. by the end of July. He did 12 hours on the vent today. Wow. He just keeps getting better and better.

He will still have dialysis and t-trials and walks just like our old floor. We will just have to train all these new nurses like we had to with ICU when we first came there. We will now have a whole new set of friends that we are meeting. I hope they like us----I feel like a kid in a new school. Will they want to be our friends??? Will we have anyone that will take Carolyn's position and Will's protector, Sumer's position as a sweetie, Kate's steady head, Tracie's book club and good food, and all our good RT's that have been pushing Will????

I'm really tired tonight from moving and everything so I think I need to go to sleep and I will let everyone know how wonderful this new floor is tomorrow night. We did have visitors today. Jesters stopped by on their way to Denver and Brent and Stacee Clark came up to visit. While they were visiting Will, Tom and I went to dinner together. It had been so long we didn't know what to talk about. I didn't get those pictures on the blog but I will hopefully today. Maybe I will take pictures of the new room.

God bless

Thursday, July 3, 2008

July 3, 2008 Thursday 1:37 am

It's almost Fourth of July. I love the fireworks. We are going to try to find where there is a good spot to see them from the hospital and then hopefully we will be able to take Will out of the ICU and we can watch them.

They started Will's dialysis about 7:45 this morning. That isn't good because then the whole day seems to be wasted because Will is so tired from all that. We did get him up and walking tonight about 10 pm and he gave it his best shot. He didn't walk as long as he did yesterday but that is to be expected. He did do a t-trial for 11 hours. I never thought we would get to this place where he is doing that for this long. Maybe he's finally beginning to trust his new lungs. They did take another 4 liters off him today. I will try to get another picture up on the blog really soon. He's just shrinking before our eyes.

They did another doppler (ultrasound) of his blood clot in his neck. It hasn't really changed at all. They were hoping it would be dissolving by now. The good news is that there isn't any more. The drs. decided that they would stop the heparin drip and just do shots in the belly three times a day. Will wasn't very happy because they are very painful, but it has to be done.

Will is expecting some company this weekend. He's really excited and I will have great pictures then to show you.

We got some really good news about Richard White but I need to ask Kim if I can share it on the blog when I talk to her in the morning. She sure has some funny stories about them being in the big city of Houston. Talk about country hicks, so maybe we need to pray for them to make it back here safely.

People are beginning to leave SLC to go off to the mountains where they will bump into everybody else from SLC. I don't know if I could camp like that, practically on top of each other. Anyway if any of you are going camping, have fun and be safe. Angel and Aaron are going to take Candace, Aaron's daughter, camping. I can't wait to see the pictures.

Oh I forget, they had a bomb scare at the hospital today. For about four hours nobody was allowed in or out of the hospital. They finally did a sweep with bomb sniffing dogs and it was just a hoax but it was kind of scary for a while. The news crews were all over outside. The police weren't letting anyone up the hill. They told us if they found anything they would have to evacuate the hospital. How would they get these patients out of ICU??? There is some very, very sick people here. I hope they catch the sicko that called it in. I do thank God that it was just a hoax. Exciting times in the big city.

God bless

Wednesday, July 2, 2008

July 2, 2008 Wednesday 12:50 am

Well, I had a day off from posting the blog and my niece, Christi, wrote for us. It was fun to hear the comments. Christi, you did a good job with that-you made me laugh and you made me cry. Thanks. Will is lucky that he has so many cousins that he is close to. It really isn't easy sometimes to do the blog especially when you know so many people read it. I get a little intimidated and sometimes it takes me hours to post a blog because I go over it and over it.

The news is still good today. Will did 9 hours on the t-trial all at once. He walked this morning farther than he has. So I went out and measured with my steps because we don't have a measuring tape and I knew it would be an impressive gain. Day before yesterday, he walked 37 steps; today he walked 67 steps. That's just one day improvement! He's going to make his goal of being in the apartment by the end of July (maybe).

Carolyn took us on a walk (wheelchair for Will) outside and around the hospital. It was so nice to get out again. It's hard to have a nurse leave the unit to take us on a walk but Carolyn thinks it's very important for Will to see life outside of this place. We agree with her. Thanks so much Carolyn. Sumer gave Will a shave which he needed. Thanks, Sumer.

Today is another dialysis so we will start the day early with the walking because after dialysis he isn't up to doing anything. They want to pull off another 4 liters. It's working wonders. Nothing but good news lately, isn't it wonderful? Life is so good.

Please remember to keep Richard White in your prayers today. He's still in Houston and he will be getting his results from all his tests today. We know God has good things planned for Richard. Richard, we love you.

Tanya, our Cf friend that is awaiting a lung transplant, is back in the hospital again. Please say a prayer for her and pray that she gets her new lungs quickly.
Everyone is gearing up for a wonderful 4th of July. It will be a great weekend.

God bless