We're going home

I can't believe it's finally going to happen.  We are going HOME.  Yes, John has CMV.  I talked to the nurse on the phone this morning and she said it showed up in John's blood test yesterday.  But Dr. Claxton has decided to treat John with oral antibiotics at home.  That means a pill!  That's just as well anyway, because his kidneys couldn't take any IV antibiotics at this time.  His Creatinin level is still crazy, and he will be going home with some problems, but that is an entry for another time.  This entry is just to say that we are going HOME!  John will be closely monitored by a home nurse who will come two days a week, so I feel really good about that.  If anything goes wrong we can just come back.  

Now the next problem is getting home, LOL.  It is flooded here.  It may be that way for several days.  We could be here for a day or all weekend.  Who knows.  But after being here for two months, what's a couple more days?  Okay, got to get off, just wanted to tell everyone the great news.  God is good!  Krissy :)

Will we ever get home???

Ok, so it's like this.  Yesterday John had an appointment with Dr. Claxton.  It went rather well.  While John still has some problems, Dr. Claxton was going to allow him to go home today (Thursday), and have care at home with a home nurse.  But we were going HOME.  Then when we got back to our room at Hope Lodge later in the day yesterday we found a message on the answering machine from Dr. Claxton's nurse.  She said don't leave town (Hershey) and that John will have to get a test on Friday to see if his CMV has returned.  You see, when John went to Dr. Claxton's yesterday (Wednesday), he had bloodwork drawn, and something showed up in the blood.  It is very possible that the CMV is back.  Mitzi (the nurse) said she would explain more when she could get ahold of us by phone on Thursday morning.  I am anxious to get the call this morning because I want to know just what the treatment would entail if John does have CMV again.  The standard treatment is the IV and that would mean staying in Hershey for another four to six weeks.  But I don't think John's kidneys could stand that treatment.  I wonder what they are going to do to him, and if they are going to make us stay here.  Okay, I have to get off now, I have some things I have to go do.  I just wanted to let you all know what is going on.  I will try to post later on today and let you all know what Mitzi said when she calls.  Krissy  

Monday Morning Question

Monday Morning Question:

Describe a "sound" from your childhood.  What was it?  When did you hear it?  What does it bring to mind?

My answer:  Crickets.  I love the sound of them.  Yep.  I remember the night I lay awake listening to them on the eve of 4th of July when I was a little child.  All six of us kids were sleeping in the playroom (yes, there were six of us kids - I had four sisters and one brother), and it was late in the night, and I lay awake listening to the crickets.  It was so much fun and there was so much excitement.  The first bit of excitement was that we all got to sleep in one room in a "slumber party" type arrangement (because it was a holiday).  The second bit of excitement was that tomorrow we would see the fireworks.  Oh, what excitement there was in childhood.  Crickets always bring me back to childhood excitement.  

Bumper Stickers 3

Bumper Stickers

Ninquam commoda homini lupinotuum pectinem crinalem. (Latin for:  Never lend a werewolf your hairbrush.)

Proximo sed nolo fumigare (Latin for:  Close but no cigar)

Sentio aliquos togatos contra me conspirare.  (Latin for:  I think some people in togas are plotting against me.)

Luke, ego pater tuus sum.  (Latin for:  Luke, I am your father.)

Aio, quantitas magna frumentorum est.  (Latin for:  Yes, that is a very large amount of corn.)

Which one is your favorite?  I like the last one about the corn the best.  If you have to ask why, then never mind, because I guess you just don't get my sense of humor, LOL.  I also like "Luke, I am your father."  Krissy :) 

We really may be going home this time!

It's been awhile.  Sorry I haven't written.  No, I haven't fallen off the face of the earth!  I have just been busy.  Let's see, what's new? 

First of all, the good news, there is a very real chance John and I will be able to go home next week!!!  I mean HOME HOME.  Back to our apartment, family, kitty! 

Things are looking up.  Well, sort of.  John's Creatinin level was 3.2 today (Friday).  It has been as high as 3.5 in the past few days.  But I was told that is because of the Vanco IV antibiotic that he has been getting.  I give him the antibiotic, usually at Day Hospital.  We have been having to go to Day Hospital daily, because John has been needing sodium chloride to flush out his kidneys.  This may sound drastic, but it is not really.  I was told that his Creatinin level will drop, and he will have normal kidney functioning when he stops the Vanco.  This should happen when we return home. 

His counts are not the hottest either, but I guess they are better than when we first came down two months ago.  Sue the Nurse Practitioner says she truly believes that the low counts are due to recent infections of Johns, and not due to any return of MDS.  Personally, I have come to accept that this is probably true, and if it is not, I will deal with it if and when I find out.  There is nothing I can do about it right now, and worrying is not helping me any.  If she really believes this, I am going to accept it.  I am going to ask Dr. Claxton though, because I want to hear it from HIS mouth.

Let's see, what else is new?  John is almost done with all of his infections, LOL.  He still has a viral infection that is winding down.  It causes him to cough.  He was also cultured on Wednesday because he had three infections in his PICC line (two in his blood, one in the actual line) and on Thursday one of the cultures came back positive.  It was positive for coccis which means that he had bacteria in his actual PICC line.  That means thathe had another infection.  I asked the Nurse Practitioner what could be done.  I said, "Now what can possibly be done?  He is already on an antibiotic and it didn't kill the infection.  What more are you possibly going to do?"  She replied, "We will just take out the PICC line."  I thought that was an interesting answer because that means John will have to get stuck with a needle everytime he needs blood drawn, instead of getting it through a port!  Anyway, before removing the port (PICC line) Sue decided to reculture it one more time on Thursday to see if it was still positive.  Cultures take up to three days to grow.  We will find out this weekend if John goes home without a port.  

Well, that's about it for the medical news.  Now here is something kind of cool.  I got a Teddy Bear today!  A nurse walked up to me and gave it to me!  One of my favorite nurses.  She said she was saving it for somebody special.  It is a Boyd's Bear (a collector's item).  I don't care about that though.  I took it out of the numbered bag, and almost ripped the tag off but somebody showed me how to hide the tag under the clothes, LOL.  Said it might be worth something some day.  I told them I didn't care.  I was just floored that I got her.  She has a yellow and green dress on, green bloomers and a yellow sweater.  I am floored that a nurse did this for me!  She just gave her to me and kept hugging me.  As a matter of fact, the nurse (Mary Jo) saw me earlier in the day, then went home and got the bear from home and brought it to me.  Oh, the bear has the cutest headband on too.  When I can add pics I will show her to you.  I can't add pics yet because I am not on my computer at home.

People have been so kind to me.  When John went into the hospital last time somebody left me a prayer shawl that they had crocheted outside the door of my bedroom.  They left a note in it that it was for me.  The note wasn't signed.  I asked a particular person if the present was from them and she said "No".  I can't prove it, but I bet it was.  She is the kindest person.  She gave me comfort just when I needed it.  I have seen her crochet things.  She does it for a business.  She makes a lot of money and her work is just beautiful.  It was very kind of her to give that to me.  It is a beautiful cream color.  People have been so nice to me.

Okay, well I better get off here now.  Time to hit the hay.  Day Hospital comes early, LOL.  Love you all, Krissy :)  

Monday Morning Question

Monday Morning Question

It's been awhile since I've done the Monday Morning Question.  No, I am not back home again.  I am still at Hope Lodge in Hershey.  I just wanted to start doing the question again because I wanted to start doing some "normal" things again that I used to do.  I want to thank Val from There is a Season for doing the MMQs so faithfully for me these past couple of months.  Val will continue to do the Photo Scavenger Hunt until I get back home, so PLEASE go there to find the Photo Hunt.  Now on with the question.

This question was inspired by Deb of Sassy's WORD. 

When you were a child, did you ever win an award or a trophy?  If so, what for? 

My answer:  I won several art awards in local art shows and at school.

Now go ahead and answer the question in the comments section below, or in your journal and leave a link to your entry in the comments section below.  Because we want to know more about you!  Krissy :)

What a day (Sat.)

What a day.  What was only supposed to be a short time at Day Hospital turned into hours.  The nurses wanted to get an accurate measurement of the medication John was getting in the home IV I was giving him.  They wanted to know if he was getting too small of a dose, just right, or too much.  So they had me bring in the home IV, and took a measurement before getting the IV started.  Then they also took a measurement when the IV was over. 

Well, the nurse and I started the IV.  The thing about it is, we waited the whole hour, and nothing happened.  I told her periodically that it was not working, but I guess she didn't believe me, because she didn't listen to me.  This was her first time doing a home IV.  At any rate, after an hour, when it was supposed to be finished, I told her it hadn't worked (she was busy with other patients the whole time).  So she came over puzzled and decided to flush John's line.  It needed to be flushed to work.  After she did this it worked right away.  It took another hour to work though. 

I am glad this happened at Day Hospital, because if it had happened at home (oh, I just called Hope Lodge home, LOL) when I was giving the IV I wouldn't have known what to do.  I hope that I would have had the sense to call a nurse, either at the hospital or Critical Care (John's home nursing agency), and they would have known what to tell me to do.  I am sure they would have.  At any rate, now I know what to do if this ever happens again when I am giving him a home IV at Hope Lodge or at home.

Also John had to stay late at Day Hospital to get a big bag of Sodium Chloride.  When he left the hospital on Thursday his Creatinin level was 2.3.  Today it was 2.9!  There is no explanation for it going in the wrong direction that I know.  I hope his kidneys are alright.  I wonder what is going on.  Oh, perhaps he is not going down anymore in his Creatinin level because he is not on fluids 24/7 like he was in the hospital.  I hope they figure out what to do soon.

John's blood counts continued to improve today.  Not great but an improvement.

I feel like such a brat tonight because I complained about Day Hospital being long and here I have John with me alive and well.  There are others here who have lost their spouses.  This is a rough time here with some who have lost their spouses and others hospitalized.  I am truly thankful John is alive and well.

Well, I wish I could write something really exciting here but nothing exciting has happened lately!  Except John getting out of the hospital.  That was exciting.  What is not exciting is that he is having little fevers off and on.  I hope the antibiotics work.  Oops, I was going to talk about something other than the illness for awhile, LOL. 

Okay, I guess I will go.  I don't have anything interesting to say.  I will try to come back and do a fun entry tomorrow.  Krissy :)   

Bumper Stickers 2

Bumper Stickers 2

I believe Elvis is still alive
And I vote!

I fish, therefore I lie.

We interrupt this marriage to
bring you the hunting season

This sentence no verb.

Just say no to clowns!

I work for gas money

You have reached the last page of the internet.
Now go outside and get some fresh air!

4 out of 3 people have trouble with fractions.

Can't sleep... the clowns will get me!

I missed winning the lottery by only six numbers.

A penny saved is nothing in the real world.

Which is your favorite?  I think I like "This sentence no verb."  More bumper stickers to come next week...

John is discharged from hospital

John was discharged from the hospital yesterday (Thursday) to Hope Lodge.  His fever is down.  Not completely down but a lot better.  I am hoping they didn't discharge him too soon.  When they released him he had no fever, because he was on antibiotics 24 hours a day, 7 days a week in the hospital.  Now he gets an antibiotic once a day.  I give him the antibiotic myself.  It is an IV antibiotic that I have to give him at Hope Lodge through his PICC line.  

His creatin level (kidney function) is improving.  It is still very poor but is improving.  And his counts are very low, which is just one of the reasons why we are still here in Hershey.  But his counts are improving, and slowly but surely are coming around.  Hopefully the doctors will soon find out WHY he is having problems with his counts.  Anyway, his white count is improving.  He is getting special shots called Neupogen shots to artificially stimulate his white blood count.

Okay, the cool thing is that in ten days (or maybe two weeks?)  we will be allowed to go home!  We are so excited.  We are praying that everything runs smoothly and this comes about.  We can't wait to see our family, our home, and our kitty!  Just to get back to our normal life again.  How exciting!

Okay, love you all, Krissy :) 

Bumper Stickers

Bumper Stickers

Shouldn't it be spelled FONICS?

I post therefore I am

You post therefore you spam

It's 10 o'clock.
Do you know which website your kids are on?

I think, therefore I'm overqualified

DYSLEXICS UNTIE!

When life gives you lemons... shut up and eat your lemons.

(More bumper stickers to come next week)

Which one is your favorite?  I like them all but I think I will pick: DYSLEXICS UNTIE!

John is back in the hospital

John is back in the hospital.  He has been in for two days.  He had a fever of 102 so they put him in.  From doing cultures, they found he has multiple infections in his sputum, multiple infections in his blood, and an infected PICC line.  He has a horrible cough and has been burning with fever.  They have him on an antibiotic called Vancomycin to get rid of the PICC line infection, and an antibiotic called Cefepime to get rid of the other infections.  They said that if his fever doesn't drop by Monday they would add additional antibiotics.  

I am hopeful because this is such a good hospital.  I know they are taking good care of him.  On the other hand, I am slightly discouraged.  I just thought I would be honest.  Last night I was wondering when this was going to end.  We have been here since April 29th, and he has had three hospitalizations during this time.  The rest of the time he has been in Day Hospital.  During this time his counts have been very low (this is bad), and his Creatin level has been very high (bad again).  His kidney function actually got worse yesterday, and he had been off the CMV medication.  Very strange.

Don't get me wrong.  Even after saying all that I am still positive.  I am going to see this through till the end.  There will come a day when John is at home and doing well.  I believe that.  Meanwhile, I just need to keep positive.  

So how are each of you doing?  Let me know in the comments section.  I don't want this to be all about me and John. 

Krissy :)

Not going home just yet

I guess I was wrong.  In yesterday morning's entry I said we would go home if John was unable to receive his CMV IV medication, because there would be no reason for us to stay.  Well, he couldn't receive the CMV medication yesterday, because his creatinin level was too high (indicating kidney function problems), but they don't want him to go home anyway because they are alarmed about his kidneys, and they have to monitor him in Day Hospital.  So this morning we go to Day Hospital, where they will check his kidney functioning (creatinin level) yet again, and give him a liter and a half of IV sodium chloride to flush his kidneys.  They were very concerned about the reading of his creatinin level yesterday.  It was the highest it has ever been.  And he had had Saturday and Sunday off to bring in down.  Instead of coming down it went drastically up.  Which means his kidney failure is getting worse.  I don't want to alarm everyone.  He is still walking around and talking and everything.  He is not on dialysis.  But they are beginning to get concerned.

Well, that's about it,  Krissy   

Maybe we'll go home

Wow.  I guess it's been about a week since I have written.  I didn't mean to let so much time go by. 

Here I sit at the computer with a lot on my mind.  John goes to Day Hospital tomorrow (Monday) and will possibly find out when he will be going home.  If he can get his dosage of Foscarnet (IV Cytomegalovirus medication) he will stay, if he cannot, we will probably head home.  The reason he has not been able to get his CMV IV medication a lot of the time is because he has had chronic renal (kidney) failure.  This has prevented him from getting the medication.  They may give up on trying to give it to him.  If they do quit, they are hoping the Cytomegalovirus (CMV) doesn't come back.  Right now he is testing negative for the CMV.  So everything may be okay.  But he was supposed to get the medication for six weeks, and he is not going to get it.  This frightens me.  So does the fact that he has a chronic kidney problem.  I hope it clears itself up naturally as time wears on, and he no longer is getting any doses at all of the IV CMV med.

John went to Dr. Claxton's this past Thursday.  It was an okay report.  He was told that he did not have MDS, that he had engrafted, and had the donor's cells.  He was also told that for awhile he had not been engrafting, and that is what was going on with the "thinning marrow".  To be honest with  you, I KNEW something was wrong, and had been nervous about it.  But I am glad to know now that things are better.  But Dr. Claxton said that John still has "thin marrow".  It is better than before, and he still has the donor's cells, but his marrow is "thin".  That still makes me nervous.  Call me silly but it does.  Maybe I have been overly cautious lately. 

Anyway, I will let you all know tomorrow if we are going home soon or not.  All I can say is that if we are, they had better follow up with John at home very closely (with a home nurse), because I am a little nervous about him returning home. 

I love you all, Krissy 

PS  John's dad and stepmom came and visited today.  We had a blast.  We talked for a long time and went out to eat at Applebee's.  This is the second time they came this week.  We were so glad to see them!