Monday, June 30, 2008
Baby steps are turning into giant leaps!
Great minds think alike (and dress alike, apparently)
Hello all! I thought it was time for a fresh voice to inform all of you about Willie’s progress (and a few other things to spice it up a bit), so I have locked Aunt Terri in the closet while I take over. (Coach – I expect my payment in full if you want me to keep her in there). I have some big shoes to fill, however, since she does such an amazing job of keeping us “in the know”. I told her yesterday that the reason I was always so impressed was because she writes in such an organized and clear manner and that is soooo NOT the manner in which she thinks or talks. The focus she must endure to say the actual names of the nurses on the first try instead of writing “Summer, er Deb, no - Caroline, Jack, I mean……whatever her name is”. I don’t think she knows how much we appreciate her willingness to skip the usual role call and just spit it out already.
My visit has been more than I could have hoped for. Willie’s progress in just the few days I have been here is astounding and from the sounds of the cheers (literally) coming from everyone on the unit, he has been consistently and quickly (relatively speaking) blowing them away. Forget the medical side of it – he is getting compliments left and right about how great he looks, and who are we kidding – that is really what matters, right? It must be the enormous amount of weight (fluid) he has lost since he started dialysis. He is shrinking before our very eyes and I just know the day his chicken legs return is right around the corner. Aunt Terri and I have asked for dialysis too, but the stingy medical people didn’t think it was the answer to our weight issues. What do they know? They also said no when I asked for some pain meds when Will gave me the thumbs up (behind the nurse’s back) while getting his. I really don’t think he should be able to brag about the awesomeness of his happy pills knowing full well I wont be able to experience it with him. He can be so selfish.
He has doubled his walking distance since I got here yesterday and he went from 6.5 hours on the T- trial yesterday to 8 hours and 22 minutes today. He kept telling everyone it was 8.5 hours. He lies, and I just can’t go along with it. Oh – and he cheats too. While we are doing crossword puzzles, he tells me to look in the back. I said, “We are only on the second word….I am not looking in the back”. I told him - just like I wont lie with him, I wont cheat with him. I do have some morals and I am not going to let Willie taint them. I will make him a deal though – If he says a bad word, I will cheat with him. Guess who wont be cheating anytime soon?
Dr. Harris (I think that is right), who is the head doctor over the ICU, came in today to see Will. She told him that if he kept bringing tears to Dr. Cahill’s eyes, then she was satisfied. Dr. Cahill seems every bit as wonderful as Terri says and she seems pretty tough, so if his progress is enough to bring tears to her eyes – that says a ton.
He stayed awake for quite awhile today too, which was huge considering he had dialysis again (another 4 units) and that usually wipes him out. After he was done with that I rubbed his knees, which were only sore because he is getting old. I know this because my knees were killing me when I stood up to rub his (and we are the same age). Of course that could have been because I spent 30 minutes wandering around the apartment parking lot this morning after my run looking for the right building. In my defense, there are at least 890 buildings in their complex, they all look the same, I forgot to look at the bldg # before I left, and I was totally discombobulated (your new word for the day, Keri) after getting lost on the trail and coming back the wrong way to begin with. I only humiliated myself with that story because I knew Terri would if I didn’t and she would have been merciless. Back to the point…where was I? (I had a Terri moment for a second) Oh yeah - we then watched some Seinfeld (these pretzels are makin’ me thirsty), did some more crosswords, chatted about my boys and school, got caught up on Keri’s daily emails (which are an absolute riot)………. And then he finally decided to take a rest. Thank God because I was exhausted! Of course they come in every twenty minutes to check this or refill that or give him a treatment, or insulin, or whatever……It was impossible for me to get any rest. :-)
I have spent my whole life admiring Will, as I know all of you have. It is impossible not to. Even so, I had NO idea how endless his capabilities really were. My time here with him the past few days has reminded me that there are very few people (if any) that we encounter in life that can exude the strength and humility that Will does, and to be as blessed as we are to have encountered him in any way at all is more than most people could ever dream of. I have come to believe that with this gift we have all been given in Will comes huge responsibility. We owe it to him to live our lives in a way that illuminates our gratitude and makes him as proud to know us, as we are to know him.
You are pure magic, Will and I LOVE YOU!
Your favorite cousin, Christi
PS: I almost forgot to tell you that Uncle Tom sucks at reading lips. I think it warrants mentioning.
Come down to Famous Dave’s in West Jordan to support The Cystic Fibrosis Foundation.
Channel 2 will be holding their survivor casting auditions and ribs are only a dollar from noon to 4 p.m. All proceeds go to the Cystic Fibrosis Foundation so come down get some grub and watch the wacky auditions. Also, watch channel 2 from 6 to 8 a.m. where Matt Meese will be the spokesperson for CF!
Date: July 3rd 2008 (Next Thursday) Time: Noon to 4 p.m. Location: 7273 S. Plaza Center
The last day of June already. Wow that went very fast. Angel and Aaron left this afternoon but we had such a good visit and it was one of the few times that they saw a huge improvement with Will. So it was a good time. We have had such a good response from the pictures that we put up. Thank you for all the positive feedback, I let Will know how many people were impressed and happy with the way he looked. I am going to try to keep taking them so you will be seeing him improve as we do.
Today he will do another t-trial or two. Then he will have dialysis and they plan to get another 4 liters off. His xray does show a little improvement but still quite a bit of fluid around his lungs so hopefully that is where the dialysis will start pulling the fluids off from. He got up and walked again in the hall.
Will's cousin, Christi, is up here for a few days. She's a teacher so she just got out of school and then she got a summer job but she told them she needed a few days before she started so she can come up and see her cousin. I wish her two sons could have come up also but they won't let kids into the ICU. They did a lot of crossword puzzles today while I went home to sleep. I think they cheated but they won't admit it. When Will and I try to do some, we get about four or five answers and that's all.
The days are getting better and we know what a blessing it is so we take nothing for granted. We thank God for what we have. Just a reminder, please keep praying for Richard, our good friend and neighbor while he and his wife, Kim, are in Houston at the cancer center there. I will let everyone know how it goes.
Our God is awesome and he listens to every prayer.
Saturday, June 28, 2008
Don't forget to double click on the pictures and it will enlarge for you.
This is another picture of the two that I am trying to play matchmaker for. They make such a cute couple and they need to name their first child after me. Just kidding. I will keep you informed of the saga of Antonio and Shaleena. Will doesn't think I should be doing this but hey, it's great fun.
These next pictures are more of our room decorations for the Fourth of July. We are very patriotic.
Will had a good day with the walk and we will even have a better one tomorrow. Sunday we will put more time in on the t-trials, and of course, walking. He is gaining his strength quickly.
Friday, June 27, 2008
This picture is of Sumer and Will after we decorated the room. Sumer lost the flip and had to wear the Uncle Sam hat. Will just had to wear the beads and hold up the flashing flag pin. This place is just way too much fun. Just kidding, but we do have some fun times.
Will had a good day because he got up and walked out in the hall and then sat in a chair for 45 minutes. He rested and did a 3 hour and 15 min. t-trial. The longest yet since he got his pneumonia. The Drs. took him off his antibiotics today. So he made it through this "bump." Have we turned the corner???? I don't know. I think we have turned many corners. No, I really believe it's only uphill from now on. He's just doing so good. Everybody has been so excited when they see him. I am going to have some more pictures up today so you all can enjoy them.
Then on top of that he had a good visit with Coach and they listened to the Met/Yankees game. About 5:00 Will got a visit from his good friend from high school, John Thompson and his family. It was so good for Will to get this company. Angel has been here and now Aaron will be here this morning. We all want to take Will out for a walk this morning before it gets too hot. This will be his second outing since we have been here. He won't have any dialysis on the weekend so he will have some good goals and I'm sure he will meet all of them. It's going to be a good weekend, his cousin, Christi is coming up also. Maybe I can get her to do the blog for a few days because she's the English teacher.
I need to take care of a few side notes for Will. Here they are.
Happy Birthday, Brenda. We all love you. Come see us soon.
Miss Gregg, we hope you are recuperating well. We miss you. Take care.
Mrs. C. we are thinking of you a lot, anything we can do, let us know.
Thanks and don't forget to let us know who gets the 50,000 blog hit. Should happen today, maybe tomorrow. I hope everyone has a great summer weekend. I know we will. Love to all
Will wants me to make sure I put this on his blog for his dad. So we are going to have a party up here on the unit and the nurses are really excited for some cake and ice cream. They told me that they probably won't be able to wear those silly little party hats but I told them I would get them all those little noise makers that you blow into and they make a noise and unroll. Then they can use them on their grouchy patients and it will put a smile on their faces. Ya think???
Sumer and Will were helping me decorate Will's room tonight. I got some cute pictures and tomorrow I will put them on the blog. Yup, I got my computer fixed. I guess my hard drive was fried. I don't know how I did that, it could have been from so much blogging :)
Will had a good day today. He didn't have dialysis and he really had a good nights sleep so he was ready to roll. Tomorrow will probably be a little different because dialysis really wears him out. But then he has Saturday and Sunday with no dialysis and maybe we can really get some good walking and t-trials out of him.
Angel and Will had a real good day of "messing with mom." That's a game they like to play. I don't think it's that funny but hey, they get a good kick out of it. I will be glad when my son-in-law gets up here because Aaron doesn't let them pick on me. No seriously it is so nice to watch Will with his sense of humor coming back. I will even take all the teasing they do. Will is staying awake for longer periods now, except after dialysis. Everyday Will is just getting stronger and stronger. It won't be long and we will be coming home.
If you want to send Tom a birthday greeting on the blog, it's okay (even though this is supposed to be Will's blog) . I will make sure he reads them.
Within the next couple of days this blog should hit 50,000 hits. That is so awesome, but I would like the person that gets that hit to please blog or email me the time. I will put it on the blog. firstname.lastname@example.org There's really no prize but it will be fun to see who "wins" the hit.
Thursday, June 26, 2008
They took off another 4 liters (about 9 pounds) with dialysis and he is more exhausted today than he has been. The drs. said they might have to slow it down so his heart doesn't get dehydrated. Today is his day off so he will be feeling great when he wakes up this morning. Hopefully he will do a lot with that new-found energy. He still has to walk and do t-trials.
Coach will be coming up on Friday (Tom's birthday)and Tom will be come that afternoon with Aaron. Aaron hasn't been able to come up in a long time so it will be so good to see him. Then on Saturday Christi, his cousin, will be coming up for a few days. I can't wait for all the company to see how well he is doing. It does all of us good.
Wednesday, June 25, 2008
Will had a great day and maybe it was because his little sister came up to see him. She makes him smile with her goofy things she does. He still had to work hard today. The drs. decided not to do a bronch. We are really glad for several reasons, one being that when they do a bronch we seem to loose a day of forward moving and Will is on such a good roll. The second is that it hurts, plain and simple. They still might decide to do one but right now they don't think he needs one. Yea!!!
Will did two t-trials today, 15 minutes more than yesterday. Today Will walked clear to the door. That's four feet and back again. I know we have been there before but this time it seems different---more---oh, I don't know how to describe it, it just seems that this will be the last time we will have to start over again. I hope that makes sense. He told a good friend of his, Brent, that he will be out of this hospital by the end of July. That's a good goal.
Today he will do some more dialysis and they hope to pull more fluid off. Then he will still do his t-trials and walk again. With our bigger room he is going to have to walk farther to get to the door, it's probably about six or seven feet. But, he can do it. It's in God's hands.
Wait for the LORD;
be strong and take heart
and wait for the LORD.
Tuesday, June 24, 2008
Will had another dialysis today and they took off four liters. That's almost 10 pounds of fluid. I will take a picture and put it on the blog because you won't believe what a difference it has made. All in all they have taken off about 26 pounds of fluid. Of course he's going to start moving and feeling better without all that extra baggage on him. I asked if I could borrow the machine but they really thought I was kidding. Dialysis really, really wears him out.
Will didn't have to have a bronch until today. They are going to go to every other day for the dialysis so today will be better to get the bronch done. He did walk several steps today. The first he's taken since he got this dumb pneumonia. The second time he stood next to his bed, he walked in place about 30 steps. He did two t-trials during the day too. See what I mean about being tough? He's exhausted and look what he accomplished during the day.
Angel is coming up today. Tom has to go home for a couple of days because his friend that he worked with for many year, Elias Cortabatarte, passed away. The funeral will be on Wednesday. So Angel will take Tom's shift at the hospital. Then Aaron will ride up with Tom on Friday.
So things are really looking so much better. Thanks for the love and caring, and of course, the prayers.
Monday, June 23, 2008
Will had to get another pic line put into his arm but before they do that they had to run another Doppler. That's where they check for blood clots because of his history of clots. They didn't find any new ones (the one in his neck is still there) so they were able to put another line in. The other one they have been using finally quit on us. Everything went well with that. But he was supposed to have a day off from stuff and instead it got kind of busy.
Will did start the day sitting in the chair for a couple of hours. Then he stood a couple of times and did a couple of t-trials. He still has a lot of trouble breathing because of the pneumonia so he's only been able to do about 1 1/2 hours each time. Still that's so good compared to a week ago. He is going to start back on the dialysis today for the next three days and then they will reevaluate things. He is supposed to have a bronch also sometime today. They want to see how things are going with the pneumonia. So another busy day scheduled for Will.
I see such a good improvement with him. Will's able to move so much easier and he just looks better. Angel should be coming up this week to help us out so that will be so good for Will (and us too). She will stay until Aaron comes down on Friday and then we will celebrate Tom's birthday. He turns 40 on Friday :) We are going to decorate his room for Fourth of July. I will post pictures.
Sunday, June 22, 2008
Will had a pretty good day. He started the day at 7:20 am with the dialysis people coming in and wanting to start his three hour dialysis. He wasn't very happy to have to wake up that early, but it was done. Then he rested because dialysis really wears you out. He did do two t-trials and he stood for a couple of minutes. Now that there is no more basketball to watch, there's not much to see on TV.
Will has a day off today from dialysis so hopefully we can get a few more standing exercises. He is looking good. They took off another 3 liters for a total of 8 liters. That equals to 17 pounds of fluid now off his body. He probably has another 40 pounds to go. They will do another xray and blood workup to see how his kidneys are recuperating. I will let you know. Thanks for the love, things are looking a little better.
Saturday, June 21, 2008
He had about the same day as yesterday. He got his second dialysis treatment today for 2 1/2 hours. They took off another 3 liters. He is really tired afterwards and just wants to sleep. But that is very common. His BUN (test to see how the kidneys are functioning) is coming down already. Way to go dialysis. He has another tomorrow and then gets a day off. He stood and impressed us how much more strength he has today than yesterday. He made it to two minutes. Tomorrow we are going for five. He did do a t-trial again today for one hour, a little better than yesterday. Remember the t-trial is where they take him off the vent (unplug him) and put a oxygen mask over his throat to deliver more oxygen and have him breathe on his own. With the pneumonia it is hard to expand the lungs. That's why it is so important to get him vertical as much as possible so gravity and can help open the lower lobes of the lungs. The xrays don't show too much of a change yet but maybe today.
This is where I want to thank a few people but first in James 1:17 the Bible asks us to remember God is the provider of everything we need and we need to see every gift as coming from Him. So I want to thank God for giving us our friends and family to help us through this journey. I know I have said this before, but I can't tell you all how vital you all are in helping Will through this journey. HEAVENLY FATHER THANK YOU FOR BLESSING US SO RICHLY.
Marylou Culley, a long, long time friend sent me a surprise box today with all our blogs and comments put in a binder so we can revisit them any time we want. What a wonderful, thoughtful gift. You put a lot of time into that and it means a lot. God bless you.
I want to thank the people that responded to my plea for emails about dialysis. I have been learning a lot and it helps. Knowledge is power, right?
I want to thank Randy, Donna, Brent and Kim for coming down the last few days and visiting Will. I think it is very important that we remind him of his life out of this hospital right now because we have been here so long. He might have forgotten what's it like out of these four walls.
I have received several emails that have made me feel that I need to respond that this kidney failure is not the worse thing that could have happened. We are getting fluid off, he's getting stronger and the toxins are leaving his body. Please don't feel that this a bump that we can't overcome.
I think to trust God COMPLETELY with EVERYTHING is the probably the hardest command to follow. This journey has been teaching us what it means to give it all over to God. We absolutely feel that God has his healing hands on Will still.
I thank God for all of you and I pray that He pours his blessings on you and your family.
Friday, June 20, 2008
When he got back up he was pretty sleepy. Then in about one hour they came in and said they were going to start his dialysis in a few minutes. They set the big machine up and got started. It was very, very interesting how that machine can take the place of your kidneys. The blood comes out of the body then goes through this machine and goes back all cleaned up. AMAZING! They start slow-only two hours today-and go up from there. He'll do this for three days, then take a day off, and go for three more days and then they will move him to every other day. They can take fluid off faster this way also. They took two liters off today. Now only 12 more to go. That's not the only reason they do this though. It's to take the toxins out of your blood stream. It should make him feel so much better. He also got two units of blood. The transfusion was needed and that might make him more energetic too. So a lot accomplished.
Then our friends came up, Brent Clark and Kim White. Kim jumped in with Brent when she found out he was coming up. Brent stayed with Will and visited while we went to dinner. It was nice and Brent and Will had a very good visit. Sumer and Brent talked Will into standing for a couple of minutes. Sometimes after dialysis people don't have too much energy for a while. But Will did visit and stand so he must be doing okay in that area. Kim stayed the night with me in Will's room and will get a ride home with Coach and Donna because they are coming up today. She is so funny, I took a picture of her trying to catch a nap in Will's room. Wait until you see how she tried to sleep.
We all feel that this is going to help so much. For all you people that are reading this, if any of you have had dialysis, let me know how it went, please. Remember my email- email@example.com if you don't want to blog. God has Will's life all planned out and for some reason Will must need to go on this machine. I thank God that there is something like this that we can try. Also, it's giving his kidneys a much needed rest. Thank you for all your emails today for support. Things are good. God is in control and there is no better pilot.
Wednesday, June 18, 2008
Here's how Will enjoyed the game!
Thought everyone would appreciate the pictures of Will's buddy and nurse, Sumer. Everyone has come by and congratulated Will on the win. How funny is that?? It's like Will called Doc Rivers, the Celtics coach, with the winning play or something. (Well, I'm sure he could have).
He was a little more tired today. Maybe it was all the excitement from the game, who knows?
The drs. have decided that Will needs to start on dialysis tomorrow. His kidneys aren't working too well. They will take him downstairs and put in a tunnel catheter in his upper chest which will be where they administer the dialysis. This procedure will only take an hour or so. Then they will bring him back to his room and sometime tomorrow or the next day they will start the dialysis. From what little they have told me, they will go for about two hours for three days, skip a day, then they will do four hours for three days. Then I don't know what the schedule will be. This should help in several different ways.
I will know more about dialysis after Will does it the first time. I really don't know the "workings" of dialysis so I will be learning lots in the next couple of days. The drs. told us he might just be doing this for a few weeks, a few months or permanent. There is no way they can tell if the kidneys will recover or not. I think they found the damage in time because they are always checking on that. So my opinion, they will come back working full force. So that's our prayer now.
Will thought he was strong enough to try a t-trial today. He did okay but only made it to 45 minutes but that's more than the last few days of not doing any. I'm glad he took the initiative and tried it on his own. I missed Dr. Cahill's visit today again, but she told Will that she things the dialysis will help and it will take some of the fluid off. As everyone knows, the fluid has been our enemy since we started this journey. Will's sleeping now, we've got two fans in our little room now. They are still trying to fix our air conditioner.
Thanks for your prayers and God bless.
22 years ago Will watched them win their last championship and he's watched every year since. Way to go green. Everyone here was celebrating just because Will was happy. Even Coach thought it would be okay if they won just this once.
Tuesday, June 17, 2008
Will still is having trouble with his pneumonia. He has been sleeping almost all the time. They did stop the lasix because his kidneys are having trouble handling it. We did get him to stand again this morning and tonight but he's a lot weaker than he was yesterday. It really doesn't matter if we have to hold him up, it's just really good for him to be standing vertically to let his lungs open up.
The docs decided to do another bronch this afternoon. They wanted to do a "wash" to see what was growing in there. It's where they put saline water into his lungs and then suck it back up and put it into a specimen cup. It can tell them if its strictly pneumonia or rejection. The wash takes a few days to grow out the culture so we won't know anything for a while. But the docs are really glad that they started the antibiotics when they did because he had so much thick secretions throughout his lungs. It even clogged the scope a few times. They weren't able to see too much because of all the "stuff" in there. So we do know the he's battling a bad case of pneumonia and it will set him back a little. We've been there before and we can get him back up again.
So today is going to be a good day. Two things are happening. Number one-the Celtics are going to take the NBA Championship tonight (just for Will :) right Coach? ) And Number two------and the best--Dr. Cahill will be back from Israel. She's not going to be happy with Will. Seriously she will probably come in and tell him to roll over so she can kick his butt. But that's just her way of saying she loves him. She'll have a day or two to get her bearings but then things will start rolling for Will's benefit. Also the doctors around here are a little afraid of her. They already told me they are taking the day off because she's not going to be too happy with them letting Will get sick again. (Even though we know there was nothing they did wrong-she won't see it like that) No, I'm teasing. She sounds intimidating but she's really a softy.
So things aren't as good as they were this time last week. They will get better but we could all use your prayers, please. I hope you all are enjoying the summer weather. Don't get heat stroke. Love to all---Go Celtics
Monday, June 16, 2008
Well, Will had an uneventful day today except for the game tonight. Celtics were almost there so we will get those Lakers next game. His xrays showed that his lungs are about the same. The docs are still trying lasix to get the fluids off. Will isn't cooperating very well. They will do it for another day and then stop it. His kidneys aren't taking it so well. He hasn't had hardly any more blood so the new trach is working. He is still sleeping most of the day but his body is needing it to get over this pnomonia. He did stand for a few minutes this morning so they can change his bed. Hopefully he won't lose all the ground he gained. So the docs might start t-trials again tomorrow if he shows he has some strength. One more day until Dr. Cahill comes back. Will really does need to have her here. She's his safety net. I hope to get a picture with her for the blog so you can have a face with a name.
God never gives us more than we can handle, I DO believe that. So this is just another little set back. We will get back to where we were in no time. Everyone has been expressing their concern but we will get through this also. Thank you all for your emails and comments on the blog. We look forward to them so much because we miss you all.
Saturday, June 14, 2008
Will and Angel have been blessed to have the best dad. One that doesn't even mind having his picture taken like this. I can't even imagine how my kids would have turned out if it wasn't for their father. I have been blessed by having a wonderful dad too. He's on a ship in Alaska right now. I was also blessed by having wonderful step-fathers. You don't have to be the birth father to be a dad. I hope all dads get to spend time with their kids today and really everyday.
Will is feeling a little better today. His numbers are looking better and they have started some Lasix again because of the fluid built up. It looks like the bleeding has slowed way down. The trach might be working. We will take an xray tomorrow and check things out. They are just letting him rest again. We had some wonderful company today and it made Will smile. Thanks for coming all the way up here just to be able to visit a few minutes. It makes Will's day. Next time he will be feeling better and can visit with you.
God bless all fathers especially today.
Will did wake up this evening a little. He was in a lot of pain so then he had some pain meds and now he's sleeping. His c02 is coming down. Still high but it's going in the right direction. They will get another blood gas in a few hours. The drs. did get the new trach tube and they put it in. It was a very simple procedure and we watched. Now we are hoping that it will take care of the bleeding and maybe some of the vomiting. Will's blood sugars have been very high today so they had to start an insulin drip. It's coming down now. He won't be doing any t-trials or walking for a while until he's more stable. So we have taken a few steps back and we won't be transferring to another room until he's back to where he was on Monday. They might do a bronch today to check out if the bleeding has stopped.
Dr. Cahill will be coming back on Tuesday. We are getting excellent help but she's our go-to man (woman, I mean). She's been with us since the very beginning and she does have a vested interest in Will (I really think she loves him a little too.). It's so hard to trust anyone else but the series of doctors that we have had are so great. They know what they are talking about. I don't doubt that at all. They have put so much into Will and I will never be able to thank them enough. Still, I can't wait for Dr. Cahill to come home so we can make sure everything is still going forward.
I feel that he is already on the road to recovering from this little set back or bump in the road as we like to call them. That meds are doing their job. This is something fixable, thank God. Prayers would be greatly appreciated. We have absolute faith in our God that he is working with us and knows what Will needs. Thank goodness Friday the thirteenth is behind us now. :)
Father's Day is tomorrow. What a great day for all you fathers.
Thursday, June 12, 2008
Will's day wasn't a good one. He seems to be taking a step backwards. His heart rate is up and his need for more oxygen is up. This could mean that he has a infection on board. The bleeding from his trach has slowed up some but is still there so they want to get that under control also. So they won't be moving him out of the unit for a while. The longer trach that we were waiting for didn't come in today so maybe tomorrow. He did do another t-trail and he stayed on it for seven hours which was good but he slept through almost all of it. He was able to walk a little bit but he didn't do well so they had to get him back into bed.
Speaking of sleeping, Will slept through the whole Celtics game. I know he's not going to be happy about missing one of the most exciting games of the year. Tom tried to wake him up but Will was just too tired. That's alright because sports center keeps replaying it over and over again. Big uspet. One more game and they have the championship. Go Celts!!!!
One of Will's favorite cousins, Missy, has been having a lot of trouble with her kidneys. She lost her right kidney now and they put a shunt into the other one to drain off infection a few days ago. Later this month they will do surgery on her. Many people do okay with just one kidney. So please say prayers for her also. I didn't want to put her name on the blog until she said it was okay. (I didn't mean to be cryptic or suspenseful a few days ago. Sorry I worried people)
Hope you all liked the picture. I will put more up later. Please pray for Will's body to fight off the infection or whatever is happening. Today hopefully will be a better day. If anything changes, I will put it on the blog so we can get some prayers going. Thanks for being our prayer warriors.
We don't know if we are going to be moving today or not. It seems no one knows so I guess we will wait until somebody figures it out. Since we know everyone here and love them and they love Will a lot, maybe we should just stay here until we go home. I doubt our insurance would go for it but it's a good idea.
I hope to get the pictures up today when I got back to the apt.
Wednesday, June 11, 2008
Angel has been making him smile today. We miss that because Will always had a smile. I hope by the time Dr. Cahill comes back next Tuesday he will be smiling a lot more. I see a little difference in his attitude lately. Maybe we will be getting the old Will back soon. I pray that this will happen so these nurses could see what a funny person he really is. He would have them all nervous with his practical jokes. I have grabbed some more old pictures of Will that I will be sharing a couple at a time. Some of you will remember them. I should do them Thursday or Friday, so check the blog out.
I think I will sleep now, first I will say my prayers and thank God for these wonderful blessings he has given us. Close family and good friends--what else do we need????
Tuesday, June 10, 2008
Big news. I think on Wednesday we might be moving to the intermediate intensive care unit on the fifth floor. That's a difference of nursing care. The nurses have three patients instead of two. So this is another step closer to home. We don't know for sure yet, it depends on if there's any beds available and the drs. here wanted to check into their care people to make sure they know how to take care of Will's needs. He still needs special help for different reasons. I have toured them before and the rooms are big with big, big windows. So in a way it's good, but the down side is that we have made a family here and it's so hard to think that we might never see them all again. That's going to hurt. Good side and bad side. I feel like God will take care that we see these special people again. Maybe we can open a resort and they all can come down during the summer and visit us in Hagerman. That would be SWEET!
Well, everyone, have a great Tuesday and love to you all
Monday, June 9, 2008
Sunday, June 8, 2008
We worry, we fret and we watch over our son. We put ourselves where we aren't really in contact with our outside world. It seems the whole world revolves around this hospital room. Well, it doesn't. I have decided God doesn't want us to be so secluded. We need to take care of our brothers and sisters just as all of you have been taking care of us, physically, emotionally and spiritually. God, I want to ask you to bless our family and friends who are reading this right now. Let their eyes be open to the power of Your love. Where there is pain and suffering, give them Your merciful peace and healing. You are the most powerful healer of all. I pray with all my might that a miracle is in the works. God is getting ready to bless you in a way that only He can. The people I am praying for right now know who they are. Keep the faith.
Tonight is the second game of the NBA Championship. We have had so much fun with the decorations in our room. I can't believe how many people are cheering for the Celtics just because they don't like the Lakers. The main reason being that the Lakers put the Jazz out of the playoffs. Well, we will take the support any way we can get it. Go Boston.
I hope all of you are using God's special day for God's special works. Spend time with the family. Take care of your neighbors. Treat each other with love. Be happy with your blessings. We love you all and thank you for your love for Will.
Saturday, June 7, 2008
This picture is one of my favorites because I am trying to play matchmaker with these two. Antonio, one of Will's favorite nurses, and Shaleena, one of Will's favorite aides just are so cute together. It's been fun teasing them all day. They play along with it. As a female, when I see an unattached male, it's instinct to try to get him together with someone. I'll tell you all how I do. (Not that most of you would be interested, but it's our little world).
It's been raining for a few days but I think now the weather should get warmer. I would like to get Will outside again soon. He needs the sunshine, but then, don't we all after the winter we had.
Will has really, really enjoyed his xm radio up here in the room. We just finished with second game of the series. First it was a blowout and then watch out, the Lakers came back and played a little. It was close at the end. But Boston took care of business. Go Green.
This is the picture that I took and couldn't find when Angel was here a few days ago. . So this is more of Will's decorations and the pillow I made him. In intensive care units, they can't have their own bedding because of infection possibilities so he can't use the pillow on his bed but we put it all over the room. Doesn't he look too comfortable??? But I don't think he was, I think Angel was pinching him under the pillow.
I hope everyone had a great Sunday. Missy, Auntie is so glad you are out of the hospital, take care.
Love to everyone
Will did two four-hour trials with no problem and he walked again with just the oxygen on, no vent. Looking good. He has had a lot of fun visiting with his Aunt Diane and Uncle Albert. They came up yesterday from Oregon and will stay until Saturday at noon. It's been very good for us to have them here. Tom loves to see his little brother. I think it's about time to start trying to get Will to let me cut his hair again. A few minutes ago, one of the nurses brought me a brownie that they had baked. How sweet is that, just like family. I guess I should try to cook something for them too.
Pray for my family. There is a medical crisis (no, it's not Will this time) and they definitely need prayers. I will let everyone know later about it.
Thursday, June 5, 2008
These pictures are of the Celtic room in ICU. It looks pretty cool even if I do say so myself. Most people from Utah are totally against the Lakers because they put their Jazz out of competition, so we are getting good reviews for the Green. Thank goodness they won tonight. We would have never heard the end of it. I do seem to be missing a picture but I will look again for it and try to put it up tomorrow on the blog. The door to Will's room has a bball on it that says No Laker fans allowed. So of course we had to put Coach in front of the door. (remember he's a BIG Lakers fan) He thought Will didn't want him in there. That was funny. Will didn't know Angel put that on the door. Good game tonight and good times. The staff here gets such a kick out of our room
Coach only stayed a little bit but Will was tired. He had a good, good day. Today was the first time he walked with no vent!!! He didn't get all the way down the hall but at least half way, I think. I really don't know if he would have gone that far without Coach telling him he could do it, just like the good ol' days when he was making Will run lines in practice. I am so proud of Will and thanks Coach for coming all the way down here with gas prices the way they are.
Will did three trials today and two walks. What a day. He's getting stronger. We haven't heard from the cultures that were sent to the lab on the last bronch. He started back on the heparin for the blood clotting. That's good. And the bleeding has lessen quite a bit. That's good too.
We all are trying to balance all the walks and trials with his need to rest and recuperate. I think we might be close to finding a good balance.
Thanks Grandma Carol for the orange rolls. Yummy. We love you and miss you too.
Will wanted me to say a Happy Birthday to his cousin, Matt. So-Happy Birthday, Matt. We love you and miss you lots too.
It's been raining so we haven't had a chance to go outside but as soon as it's nice, I hope we can make it happen then. By the way, for you information, today is National Doughnut Day. What a great day!!!
This last picture is of Will and Angel. Angel had been giving Will a foot rub and I think she got tired. So she stuck her foot up there and said she wasn't going to do any more until Will rubbed her feet. Needless to say, it did not happen. Sorry Angel.
Angel went home today. I miss her already but she missed her husband. They are still newlyweds, ya know. Thanks Aaron for letting her come up here, I know you miss her when she's gone.
Well everyone, I hope you enjoy your family like we do. I hope you appreciate them as much also. Families are God's special gift.
Wednesday, June 4, 2008
So tomorrow we will put together all the results and see what we can come up with. I know I told everyone that Dr. Cahill (Will's main doctor) was in Israel for two weeks. We've never had to go this long without her as our safety net. It's hard to put the trust that we have in her to another doctor. So we are nervous what's happening now. I know the doctors know what they are doing, right?? No, they ARE smart. They just don't love Will like Dr. Cahill does.
Will couldn't walk today because they didn't want him moving too much until we know what we are dealing with. I know they will try the t-trial test in the morning and see how that goes.
He's still with it enough to enjoy Angel's visit. She's such a crack up. She can get him to smile at the littlest things. Our friend Tanya that is awaiting a lung transplant went home from the hospital today. She's been in for a month. So would you all pray for her to get those lungs soon. I haven't heard about our young man in the other room but he's still here. The nurses can't talk about him so unless I see any family members, I don't know what's happening. When I walk by his room he looks the same. I will let you know when I know.
So we would appreciate prayers to stop the bleeding from the lungs so Will can continue with his progress. We will let everyone know how's it going tomorrow. Thanks for the love.
Tuesday, June 3, 2008
Now if I was in school, I would be celebrating a whole bunch of ways. One of them being we count out 100 fruit loops and make a necklace with them, or list 100 nouns or take spelling test that doesn't count and have 100 words on it. So lots of ways we celebrated 100 days in school. This 100 days we really don't feel like celebrating.
His fourth day of steroids is today. One more to go. I will be glad. He is much more restless and grouchy when he's on steroids. I know, most of you don't know that Will has a temper, yes he does, and it really shows on steroids. But that is normal so we are okay. He will be glad to be done with it tomorrow.
They are still trying to track down the bleeding from the trach. It seems to have gotten worse but still not life threatening. The drs. are watching closely though. He did the trials and walked a couple times. Sumer tried to talk him into another shower but he just wasn't up to it tonight. He is sleeping very well right now.
Sunday, June 1, 2008
Here is a couple of pictures of baby Tyler, oh yea, and his mom Megan Osborne. Isn't he so cute. What a charmer. It was so wonderful to finally meet him after all this time. We had a good visit with his parents too.
This picture of our little parade to get Will's walk done was so funny. If you notice we have a wheelchair behind Will in case he gets to tired to go. Well, look who is sitting in it. Our wonderful mama bear, Carolyn. Jonathon is pushing her. Everybody at the desk was just laughing so hard. Like I have said before, we get our entertainment very cheap around here.
Will got his three time trials in plus his two walks. He is so wiped out at the end of the day. This is the second day of his steroid treatment for rejection. He has already started to swell up again. That is expected so if his pictures look worse, that's why. We will get a soft trach put in tomorrow. The drs. think that could be what's causing all the bleeding when we suction him. So hopefully that will be taken care of. The best news though is that Angel is coming down tomorrow evening to spend a couple of days with us now that school is out.
Speaking of school being out, Will was so sad that he couldn't go to the Jerome graduation of Saturday. He has a tight bond with a few of those girls that graduated and he really wanted to be there. So, girls, if you're reading this, just know that your coach wanted to be there.
Will is doing so much better than he has been. We will keep on pushing and you all can keep on praying. Thank you so much. God is here with us all the time and it feels so good when we aren't alone going through this. He will never forsake us. It has been promised.
What a great day we had yesterday. Will had company and he enjoyed them so much. Randy (Coach) and Donna came back this morning. Well, Randy did anyway, Donna caught a cold so she didn't come anywhere near Will. While Coach was here, Megan and Curt with little Tyler came up and visited. As you can imagine, Tom and I went a little baby crazy. In fact, for most of the visit we had Tyler on different floors just walking and playing. Babies are definitely God's way of making life's troubles disappear. He was such a doll, for sure. He gave us his beautiful smiles and he gave me a kiss, not Tom though. I still can't believe he was ever here. The time went so quickly. Will couldn't see the baby because they don't allow anyone under ten in his room. That's probably the only rule that we haven't broken yet. Will really did enjoy his visit with Randy and Curt. They talked a lot of the good ol' days. I got some cute pictures and I will put them up tonight on the blog. Curt and Megan brought up a real "housewarming" present from Layne and Judy and Carrie and Joe. It was so sweet, our first housewarming gift. Thanks for the suprises.
Will had fun but he still had to get his workout in. He went on his t-trial a couple three times and he went for a walk. The walk didn't go as well as it has been going but there are days like that.
The last of the the biopsies came back and it shows the beginning of rejection. For those of you that have been reading the blogs, you know we have said that rejection is normal and everyone goes through it one time or another. It's just a matter of adjusting his medicines. So he's on a high dose of an iv steroid (Solu-medrol) for the next five days and then they taper it down after- wards. The steroids are what they had a problem with last time so the drs. are giving a smaller dose of it this time. Hopefully he won't have the reaction he had last time.
The one and only Dr. Cahill is gone on a two week vacation to Isreal. We are having a small case of anxiety about her being gone. That's a long time for us. She's been our one constant on this journey but we are in good hands I know. We are praying hard for her safe return. That would be a scary trip in this day and age.
Willie's cousin, Brenda and her husband, Lance came up from Pocatello for a visit this evening. It was so good to see them. She has a way of making Will smile with all her antics. We haven't seen them in awhile. She also gave Will a good foot rub. What is it with people and their feet needing rubbing??? I can't stand anyone touching my feet, Yucky.
The visits were so good, and Will was tired, but it was a good tired. He's been sleeping through the night. It's already 6:00 in the morning. Sunday---I hope everyone has a good church to go to and enjoy it for the fellowship. It's so important. Maybe we can ask for prayers for the anti-rejection medicines to do their job and keep Will on this road of good work outs.