Thursday, September 13th – Day +115

September 13th, 2007

Hi Everyone,

I talked to Mike’s nurse this afternoon and there are really no changes to report today. They haven’t scheduled his MRI as of yet. I’m sure they’ll be calling me for consent when they do.

We are kind of in a ‘wait and see’ mode right now. Hopefully we’ll begin to see some more improvements. The nurse on Wednesday told me that his rash seemed to be improving so that is good news!

Mom on the other hand is ready to go home. I talked to her this evening and they took out her catheter and want her to try self-cathing. She doesn’t see how it will work there and would just like to go home. I told her to check with the nurse and see what we have to do to spring her!!! She said she’d talk to her and if need be to her doctor in the morning. I’ll go pick her up and take her home if she is ready to go! The therapists have been urging her for the last week or so and I think she is finally ready. So, hopefully I’ll talk to her in the morning and then head out to Flushing to move her home.

Mom just called me and said that she needs to talk to the Social Worker tomorrow morning and that I should be ready to take her home!!! How about that. :)

Keep praying for both Mom and Mike. Mom is still very concerned about Mike and I know that is hard on her. Thanks for all of the continued support.

Love, Ann

Wednesday, September 12th – Day +114

September 12th, 2007

Hi Everyone,

Well Mike was a little better today in that he recognized me more than the other day.  However, his conversation mostly consisted of “Come on Ann, let’s get out of here!!!”.  :)

He had a big day too because this morning he was scheduled for an MRI and an ultrasound.  The ultrasound was a go and they thought they  might see a blood clot in his liver? but they need the MRI to confirm it.  But they couldn’t do the MRI because they couldn’t sedate him enough so they have to do a general on him and hopefully that will be tomorrow.

Then this afternoon they were going to do a bone marrow biopsy and a spinal tap under conscious sedation but they couldn’t do that type of sedation twice in one day. So, the doc did both of them after giving Mike some Morphine.  I was present for those two proceedures and he did very well.  Mike had had his previous bone marrow biopsies without anything but a local!!!  More than I could do I’ll tell you.  He also had a skin biopsy and now they are thinking that his rash is a different thing than GVHD which would be great! Hopefully the skin biopsy will confirm that.

It was a long day.  Mike did very well for all he went through and has been going through.  I think Sally and Rick are going to visit him over the next two days.  I have a lot going on until mid next week when I’ll have a chance to see him again.   I could be there everyday if my life permitted it believe me.

Mom is doing great and is excited about heading home soon.  I am so relieved!  I told her it was good to have her back.

Please keep praying – I really feel Mike still has a chance to make it through all this and get his life back.  Hopefully that will be confirmed within the next week when all of the test results are in.

Thanks and love, Ann

Tuesday, September 11th – Day +113

September 11th, 2007

Hi Everyone,

I spoke with the nurse this afternoon.  Mike had a skin biopsy today to check for GVHD.  Tomorrow morning he will have an MRI of the head and an ultrasound of the abdomen and liver.  They still want to do a bone marrow biopsy but that will probably be sometime on Thursday. 

She thought I might want to wait to visit on Thursday because originally all the tests were going to be done tomorrow.  But, since they are both in the morning I will run errands for the family and then go to Ann Arbor and spend the afternoon with Mike.  Rick and Sal are going to go down on Thursday and Friday to be with him.

He is a little better today and that is a blessing.  When I go I will talk to the BMT doc.  Hopefully he’ll continue to recover.  The PA told me that his liver levels were still rising but they will keep an eye on them and maybe the ultrasound will help them determine the cause.  He has been off one of his meds that could cause that for a couple days now.

Mom is doing very well and hopefully will be going home within a week.  Can’t wait to get her back to her own space!!

Keep up the prayers – they are working.  Thanks so much.
love, Ann

Monday, September 10th Day +112

September 10th, 2007

Hi Everyone,

I spoke with Mike’s nurse this afternoon.  No big changes.  He was still waiting for the MRI to happen.  She told me she’d have the doc call me.  He did call, not much later, and we talked about Mike’s wishes that he had expressed to John and they had written down in February.  The doc told me at this point there is still hope so they would do anything for Mike to revive him if something were to happen.  He is still hopeful that there isn’t something else going on and that the meds are what are causing Mike to be confused and disoriented.  They would like to ween him off the pain meds but he needs them right now.  His liver levels aren’t right so they took him off V-Fend and hopefully they’ll level out. 

He also talked about a rash that has come back and he is hoping that it isn’t GVHD ( Graft vs Host Disease) which Mike had early on.  If his liver levels don’t get to normal or he has GVHD again then he will be in trouble – but so far so good.

I told him I’d be in on Wednesday for the day and would bring copies of the papers that John faxed me from Alaska.  I feel much calmer today and at peace that we are doing what we can at this time.

Mom sounds good. ;)  I told her I liked having my “bad teenage daughter” back again (that’s my pet name for her because she is usually full of life).  Hopefully she’ll be moving home soon.

Thanks for the prayers and all of the support!  I know I say that every day but I can never really express to you all what it feels like to know that we are so blessed with wonderful friends.

love, Ann

Sunday, September 9th – Day +111

September 9th, 2007

Hi Everyone,

Well, not much changed today with Mike.  He still isn’t himself.  He has moments where he is very aware of things but then drifts off and is confused.  An MRI was ordered today to see if they are missing something.  It will probably be done tomorrow.  The CT of his head didn’t show any bleeds – which is a blessing.  At this time the doc says that he can pull through but it will take a long time. 

I am going to visit him on Wednesday and until then I will call the nurses and talk to them.  They know that if Mike asks to talk to me they can help him call me anytime of the day or night.  But to call him directly is fruitless since he isn’t able to communicate real well right now. 

He is eating a little but isn’t able to manage a fork or spoon.  His fingers and hands don’t have strength in them right now. 

Please pray for him and our family.  Many phone calls were made this weekend.  John faxed me a copy of some papers from their lawyer that gives me some specifics on Mike’s wishes if it comes to that.  I figured that sometime or another John and Mike had talked about such things.  Lots of tears but I feel better that I know what he would like.  And hopefully I’ll never have to initiate it because he’ll pull through all this and it will be only a memory for him!  I do believe in miracles – I’ve seen too many to not believe!

Mom is doing really great.  When I talked to her last night I really felt like she is back!!!!  I am glad.  She was really struggling for awhile there and she wasn’t her old self – wild and energetic!!  Last night and today she seemed like she had gotten back her zest for life.  Thank you God!  She should be in her own home in just a week or so. 

Thanks for everything.  All the support is so very much appreciated!
love, Ann

Saturday, September 8th – Day +110

September 8th, 2007

Hi Everyone,

I am still putting the plus sign in front of the Day number because even though Mike is in a very seriously vulnerable state right now there is still hope.  I had a good talk with his doc today.  I laid things on the line.  I just cannot see pushing Mike to survive if it is for naught.  But, his doc told me that there is still HOPE.  The bladder virus can get better, however if Mike were to get an infection at this time it would be very bad.  We talked about decisions that need to be discussed so that we are prepared to do the best thing for Mike at all times.

It was a very tough day today for me.  Mike did recognize me a couple of times.  Once was really funny because he wanted me to get out of there with him!  He was quite infatic and then the next minute he was not with me totally.  The hospital has a “sitter” with Mike when a family member isn’t there.  It is for Mike’s saftely because he tries to get up and really cannot right now.  Tonight a man named Duane was with him.  I told him how much I appreciated the fact that he would take his time to be with my brother.  He is a computer guy and does this on the side.

I talked to Joe and Mom today and will talk to John and Barb this weekend. Bruce talked to Rick and Sally.  I just want to know that we are all on the same page.  Bruce and I are Mike’s medical advocates and we will be the ones called upon to make decisions IF the need arises.  I will just feel better knowing that we all are in agreement about Mike’s care. 

Right now Mike is still on the long road to recovery and we’ll just keep praying that he stays on that path!  Thanks for all of your support and prayers.

love, Ann

Friday, September 7th – Day +109

September 7th, 2007

Hi Everyone,

I spoke to Mike’s nurse earlier today and she said that Mike thought I was going to see him today.  I told her I was planning on seeing him on Satruday.  She also told me that he wanted to call me and so she was going to try and help him do that this afternoon.

When I hadn’t heard from him by 4pm I decided to call the nurses station and have his nurse at his room to receive my call.  Mike talked but I couldn’t really understand him.  He is very disoriented right now.  He was telling me that they were going to move him.  So, I talked to his nurse and she said that he was just very tired and was confused.  She said that he did have moments when he was focused.  She also told me that someone would be staying right in his room all night with him.  They are concerned that Mike might take a tube out or something because he isn’t totally with it. 

I am planning of leaving early in the morning so I can spend the bulk of the day with him.  He is in really tough shape and it is going to take a lot for him to come back at this point.  Please pray for him.  I feel bad that he has had such a rough road.  I’ll blog tomorrow night and let you know about our day together. 

Mom is fine.  She is really working on her therapy and is getting in shape to go home soon.  I know all this with Mike is very hard for her but she is concentrating on her own recovery right now and that she should!!!!

Thanks for all your prayers and support for Mike and for our family!  We are so grateful!

love, Ann

Thursday, September 6th – Day +108

September 6th, 2007

Hi Everyone,

First I want to tell you that Mom is doing good.  She may be going home in a couple weeks.  Hopefully, it will be a welcome change for her!!

Now for Mike.  Yesterday I went to visit him after stopping to see mom in Flushing.  When I got to his room he was having a terrible day.  His nurse informed me that he was on the schedule for surgery on his bladder and that he was in a lot of pain because of the BK Virus.  So, my friend Karen and I held Mike’s hands and tried to help him breath through his bad times with pain and waited for the OR to come get him.  The nurse had even taught Mike how to breath like women do when they are in labor.  Karen and I told her she should have given him an epidoral too so the pain would be less noticable!!!!  Sisters can be soooo helpful.

Anyway, we finally headed to the holding room about 5:30p.m. and he was taken to surgery a little after 6.  The doc told us that it may be as long as an hour but could be less depending on what they found going on in his bladder.  So Karen and I waited and waited.  I asked about him at 8:15 and was told that the surgery started at 6:34.  At 8:30 I ask to have a call put in to the OR to find out what was happening.  They waid that there was a hugh, very solid blood blot in his bladder that they were trying to remove.  At 9 the head Urologist came out and told me that it could be another two hours.  I told him that I needed to leave to go home but wanted him to call me no matter how late it got.  He called my home at about 10:50 and told Bruce that they couldn’t do any more on the blood clot that night because Mike was loosing too much blood and so it was too risky.

This morning I came home from teaching at 10:30am to find a message from the hospital requesting my permission to do another proceedure on Mike.  I called and they explained that they wanted to insert a tube into each of his kidneys so drain them so that his bladder could have a rest.  I told them fine and at 4:30 this afternoon they did that proceedure.  I talked to a nurse tonight and Mike was back to his room and resting.

When I talked to his nurse earlier she told me that Mike was very, very sick right now.  I told her that we were aware of how serious all this is especially because of the high risk for infection.  However, we don’t really have a choice.  He couldn’t go on like he was with his bladder problems.   I also talked to a BMT doc who answered other questions I had.  He did say it will take a couple days to see if the tubes and kidneys are working fine.  His kidney levels were really high and that wasn’t good either but they couldn’t give him meds right now because he couldn’t handle them this soon.  They are keeping on top of everything though.

I am going to head to Ann Arbor on Saturday morning just to hang out with him.  His nurse said that these tubes are ridgid and can be very uncomfortable.  Just one more thing for old Mike to deal with!!

Keep praying.  He is not out from under any of this at this point!! I was so hopefully that he would be better soon but I was told this  will take a long time.  So, hang in there with all of us, but expecially with Mike.  He needs all the prayers and support he can get right now!!

Sorry, I didn’t blog last night but I was too tired and wasn’t sure that I could tell you much.  Today, after talking to the different staff people I had a better understanding.

love, Ann

Tuesday, September 4th – Day +106

September 4th, 2007

Hi Everyone,

Well, Bruce (my husband) talked to Mike tonight and he hadn’t had a good day.  I called earlier and he was busy with his docs and they were working on his bladder issues again.  So, I couldn’t talk to him and I had a meeting tonight so Bruce called him.  Mike didn’t have much to say because he was tired from everything that had gone on during the day.  Bruce reminded him that I would see him tomorrow.  So, I’ll blog tomorrow night and hopefully will have something positive to say about Mike’s situation.

My mom, on the other hand, went to her home today for a home visit with her therapist.  It went very well.  She even was on IM with our brother Joe in California!!  Pretty cool huh?  Our friend Sue took her to her home and then took mom out to her own home to see her new kitchen before taking her back to Fostrian.  When I talked to mom tonight she sounded good about the visit home.  She is apprehensive but I’m sure that she’ll be fine.  I think she was glad to see her place again.

Well, thanks for all the prayers.  I’ll see both Mom and Mike tomorrow so I’ll keep you posted!

love, Ann

Monday, September 3rd – Day +105

September 3rd, 2007

Hi Everyone,

I just talked to Mike on the phone.  He sounded good.  He said that he talked to his Doc today about PT and OT and they are still getting his bladder virus under control so they aren’t having him do anything at this time.  However, Mike is doing some exercises while he is in bed – which is great.:)  We talked tonight about how he needs to keep moving however he can so that he doesn’t lose the strength that he has already gained back.  He’s trying and I am proud of him.

Mom is going tomorrow to her home for a home visit with her therapists.  I think they would like to have her go home soon but she just doesn’t seem like she is ready.  Not sure why but hopefully once she is home tomorrow she’ll want to stay.  I think she has alot of mixed feelings about all that has happened these past few months.  She did what she could for Mike and he will be fine.  I hope that she can go home and start enjoying life again!!!

I am going to see both of them on Wednesday.  I’ll keep you posted.

Thanks for the support and prayers.  They are so important to all of us at this time.

love, Ann