A Good Day

As you know, we have had a very scary week so I am so happy to tell you that John has had a good day. His blood pressure has not been a problem while on the dialysis machine to get some more of the accumulation of fluid off of him. Pray that this trend continues.

John was up today and took a walk with the guy from physical therapy. He is weak and his back and hip hurt due to hardly being able to stick his big toe out of bed. They will come now daily to try to get him back to where he was before all of this.

Thank you all for praying!!! I can not express what this has meant to us. It gives us hope when there seems to be none.

Much Better

My sleepover ended around four in the morning. That was around the time that the snoring did me in. I felt fine about going as he was doing much better and I had got the night attending physician to have a look at him. He had to go twice for an x-ray. The first one he had not took in a deep enough breath because he was so groggy so he had to go for a second one which turned out much better. He has the start of pneumonia. They figure that he may have aspirated when he was so groggy. He was put on antibiotics right away. That was all wraped up about 1:00am. I am glad that I stayed and got some of this looked after. I am amazed at how well I am functioning on only four hours of sleep. The Lord must have gave me super sleep because I feel well rested.

I also showed the night attending that one of his legs was swollen. I had only noticed it late in the evening when I was taking off his sock. He will have to have an ultra sound today to make sure there is not a clot in his leg.

When they did the ultra sound of his heart on Tuesday they had found a clot on the end of one of his lines. I only found out about this yesterday afternoon when the nurse was telling me about a new drug they were putting him on. He was already getting heparin but I thought that was only because of the procedure yet I was wondering why he was still on that. Well...that is why. There is really nothing further that they will do if they find a clot on his leg because he is already getting the blood thinners that they would use to treat the clot. If he has one I am hoping that it is below the knee as those clots are less likely to move. Nurse Damon tole me that the clot on the end of the line is small so it should dissolve rather quickly.

I am frustrated about the fact that the doctors rotate every four weeks even here in the hospital. Dr. H. has gone back to the Hutch (the research center) and now we have Dr. I don't know, I did see him but he did not speak to me at all doctor and his last name starts with the letter O. He of coarse has a new game plan and basically chucked Dr. H's plan. This involves giving him masses of anti nausea drugs hoping that John will be able to eat. Dr. H planned to start giving him IV nutrition and had told John not to worry about eating.

I talked to the night attending about all of this and told her I was starting to get very concerned about John's lack of nutrition. When a person is on dialysis, they need more protein because the dialysis leeches it away. If your body does not get enough protein, it will steel it from the muscles. The heart is a muscle. He may have a good reason for changing the plan but I would like to know what it is.

John is doing much better this morning. He was up in his chair for breakfast and managed to eat some of it. Nurse D is holding off the anti nausea meds so that John can stay awake long enough to have a shower.

Through all of this I am staying calm. Thank you for your prayers. I know that God is answering them. He is watching over us.

Just A Tad Too Much Ativan

John has been having trouble with nausea. This morning he asked for a double dose of his Ativan. By the time I got here, umm, he was pretty stoned so, he is telling me some pretty strange things this morning. His nurse is hooking him up to the dialysis machine so she said that she can get him un-stoned faster than if it was going to wear off by itself. Maybe he will just go to sleep and stay out of trouble. So far he has been telling me about robbers and something or other that he hid in the bathroom and no longer can find. He is being a bit of a handful. The doctors are going to try a different regime to try to control the nausea, one that won't leave him so out of it. The doctors gave him IV yesterday after the heart procedure and all that fluid stayed in his body so he is puffy and having more trouble breathing. The dialysis will take care of that. Good news: His heart is staying in a nice normal rhythm.

What Next?

I would rather deal with minutia. For the last few days, John's heart has been beating fast. It has been running anywhere from 118 to 140. At first they were not too concerned as it was gong in a normal rhythm and they thought once they got some of the toxins out of his system it would resolve. Yesterday evening they discovered that it is now not a normal rhythm so today they are going to stick a tube down his throat and do an ultra sound of his heart. It seems that this fun began after they put in the temporary line for his dialysis. They say that this sometimes happens due to the line being just a little too close to the heart. Hmnmmmm....nobody told us of that risk before putting the line in. I asked if this would clear up when they backed the line away. The resident said that it does not always go away and that sometimes it becomes permanent and that the problem with it is that because the heart is not going steady, sometimes clots can form so they have to then give blood thinners. I told her that this was just wonderful. On top of a renal diet we would now also have to have a diet that would have to balance his INR's. She said that they will try to not have to give them and that maybe shocking the heart would work. So, I just wonder what is next? When you think you have seen it all and have enough coming down on you, it just seems to keep on raining. I don't think we will be out of this hospital any time soon. Anyhow, it is one more thing that we would like you to pray about. We are sure hoping that this is not permanant. Thanks guys. Don't know what we would do without you.

Ready Set Go

Every thing went well during the procedure this morning to place the line in John for the dialysis. While he was gone for that, imagine my surprise when the technicians showed up with the dialysis machine and proceeded to set that up. I was not aware that they would be starting it right away today. He has been on the machine for a couple of hours now and should be finished soon. He will have more tomorrow. I guess they like to start out slow and gentle. He should start to feel better in the next couple of days and I hope that he starts eating. He has not been eating much.

There, his nurse is gowning up and must be getting ready to disconnect him. He cannot get the line put in for the peritoneal dialysis until next week Friday. I think he has decided that he will opt for that. He is really not saying much. Pretty quiet, but I guess, really, what is there to say.

Last night my blogging friend, Shelia, came and she took me out for dinner. We had a really nice visit. I think we could have sat up all night and just talked. I wish I could take her back home with me to Canada. Maybe she would like to become a Canadian? You know, every now and then you meet somebody that you just click with. She is like that. Thanks Shelia. Just to get out for an evening gave me a boost.

Dialysis

Well, it is pretty much a sure thing that John is going to require dialysis. They are going to put a temporary line in tomorrow so that it is there right away. Now we have to make a decision as to which type of dialysis he will want to have for the long term. The nice thing is that there are choices and he does not have to go into a clinic to have it done but can do it at home which means that he will be able to have more freedom.

The first type is standard in clinic hemodialysis which is done about every three days in a clinic. The second type is peritoneal dialysis. This is done at home. This takes a couple of weeks to learn. The third type is home hemodialysis which takes much more training probably up to eight weeks . We are kind of thinking of trying the peritoneal dialysis. It is reversible. We don't have to stay with it if John hates it. They are quite willing to get that set up and by the time we go home we should be pros.

I also want to thank everybody for all their heartfelt thoughts and prayers. It means a lot to both of us and really gives us a boost. We are doing alright and will get through this and learn to adjust. We are keeping our eyes on the big picture and that is to have a successful transplant. That is the most important thing.

Waiting

John is staying stable. The doctors are taking it a day at a time. John had to drink more dirt drink late this afternoon to try to get his potassium levels down. I guess the lactose followed by insulin does not really get it out of his system permanently. The K-flex dirt drink does. It takes it out through the bowels. Not very fun stuff on many different levels. Anyway, it worked. His potassium was in the normal range by the time I left this evening. Now I can sleep much better tonight.

John had a pretty good day. He was quite perky even this afternoon and even planned on having a hamburger for supper. The dirt drink wrecked that plan cause after he drinks it he has to fight to keep it down. The nurses helped him along by giving him a dose of Ativan which put him to sleep. I hope he can sleep tonight.

They treat us very well in the hospital. The nurses are fantastic. They seem to have lots of time for their patients.

Well, that really is all the news for today. We are staying optimistic.

Hanging In there

I don't have a lot of new news. The doctors are still doing tests to get to the bottom of the acute kidney failure. Now, I know that I did not use that word yesterday but I really, really didn't want to freak people out before I have an understanding of what that means.

We spoke more to the kidney specialist today and because it is acute that is actually a good sign. There is more chance that his kidneys will recover and return to how they were functioning before all of this. John's condition is stable at this time and if it does worsen they will take him to dialysis asap. They are not doing a lot of I.V. and diuretics because they don't want to push his kidneys but be very gentle with them. They are still hoping that the dialysis will not be necessary.

We were a bit concerned today because the kidney specialist was concerned about finding proteins in his urine, the kind of protein that his myeloma spills, the kind of proteins that did all the damage in the first place. These proteins are called something, something light chains. When I refer to them in the future I will just call them light chains. Just the mention of this had papa bear running way ahead of things and he was thinking that his cancer had decided to get real bad, all in just one short week. He was tested thoroughly during the last two weeks and while there is some activity, there is no way on the planet that it is gone to that type of an extreme in a week. I was having a hard time convincing him of that so I asked for the resident transplant oncologist to come and explain the cancer side of things because the kidney guy really only sees the kidney side of things. She assured John that his cancer has not progressed in a week but did say that probably everything combined stressed his kidneys out.

1.Light chains
2.full body irradiation (killing off cells that have to be filtered out of the kidneys)
3. The transplant with incompatible blood type (more dead cells that the kidneys have to filter)
4.Tracolimus (the anti rejection drug that they had to give him lots of to get the level fairly high in his system so that he won't reject the transplant.

The diarrhea was caused from the junk they gave him to lower his potassium levels and really did not do the job seeing as how he kept puking it up. Tonight they are going to get it lowered by giving him insulin. First they will give him lactose to raise his blood sugars.

He had to have blood transfusion today because his hemoglobin was low. This is nothing new and not and unusual thing.

Any way, to sum it all up, his spirits are doing a bit better after all the explaining. We really would like prayer for his kidneys and especially that the trocolimus and his kidneys could some how make friends. He will have to be on this drug for a considerable amount of time and possibly forever although at much lower levels. Pray that he will start peeing. I know that you all have prayed for a lot of different things in your day and I am sure that this is a first but let me tell you, when the man starts peeing, I am going to celebrate! Susan, could you phone pastor Kevin and maybe a few more members of our church family. Just knowing that they are on this would make me feel better.

You can phone John. I know that mom would love to talk to him and that she is worried. Susan, could you pass his phone number on to her. I will leave it on your facebook private message board.

Thank you all for all your virtual hugs and well wishes and prayers. Stuff like that really helps keep me going and reminds me that most people are good. It must be that the cranky ones take jobs as taxi cab dispatchers.

Oh and thanks Becky for editing that post. I am sure that I could not have possibly have got it all correct!

Pump Master

Hopefully, theoretically, I think I can! I will go over all the material again and practice the line flush in the sink. LOL! It really is not that hard, it just freaks me out a bit. I will be squirting: 2 10cc syringes with normal saline straight into Johns body. Hee hee! I know what normal saline is from experience at work! Bad memories of Day Hospital trying to run a code blue and phoning down to Supply and Processing and asking "code blue...normal saline...stat...Day hospital!" At which point they hung up the phone. It was a good thing my co-worker knew what normal saline was and it was a good thing I knew where Day Hospital was! Now if the lady would have asked me for a .9 solution of sodium chloride? I was standing right by it at the time and knew what that was! Cheese Louise! Anyhow...they are not supposed to be doing the code blue like that and they have all that they need right there at their finger tips. It turned out that it was a couple of physical therapist who did not know the correct proceedure to follow. Still...it did not do my nervous system any good. I have never forgotten what normal saline is. I will not be mixing this up with potassium chloride. You cannot trick me. Nope! You can believe that I will be checking what it is and expiration dates. After the IV solution is complete, I have to flush the lines again, once with normal saline and once with heparin. We were instructed in programing the pump, hooking up the lines as well plus dismantling that when finished all using sterile technique. Tomorrow or the next day we will learn how to change the dressings. I have to keep charts on his temperature, how much he drinks and eats and pees. I have to keep the day organized, make sure he gets to all appointments, cook and do laundry. They want him in clean cloths everyday. I have spent the evening going over all the material. Study, study. My brain feels fried.

We met with the renal specialist today. The drug did not damage John's kidneys. He says all systems go. We will see him again in four or five weeks.

We will find out tomorrow what treatment protocol they are going to use. He is in a study they are doing to see which protocol is better. In one protocol they do a total body irradiation without infusion of fludarabine (these medical words always play havoc with the spell checker and my brain) and the other protocol has treatment with fludarabine and irradiation. The only reason they use the fludarabine is to suppress the immune system so that John does not reject the graft. Because he has already had treatment that has suppressed his immune system they do not feel that the removal of that drug infusion will not cause any negligible risk of rejection. What they want to learn in the study is if removing this step in people who fit the use of this protocol will help in the incidence of infections post treatment. They are thinking that the fludarabine causes an increase in incidence of infections even well after transplant. It is not a large increase but they still are not sure which way is best. This study will help determine that. They feel either way is fine for him. The only other difference that we learned of is in the drug that they use to suppress the immune system after. Both are hard on the kidneys. Same difference there.

We have a full day ahead of us tomorrow. I am feeling a little stressed. His appointments are really cutting it close. I hope I can fall asleep. Sometimes that is hard when I am wired.

Very Interesting!

Slowly we are getting more information about what will happen while we are in Seattle. We spoke to the Transplant coordinator today on the phone. Apparently all of John's treatments will be done on an outpatient basis. The only time that John will have to stay in the hospital is if he gets a fever or runs into some difficulty. When we first get to Seattle they will do blood tests, a bone marrow biopsy, ultra sound of his heart, MRI etc. They will test David to make sure he does not carry any infectious diseases and that he is healthy. David gets to go home for a little while before they need him back. We stay. We go to classes. We have to take a food safe class. I am clapping my hands. John really needs a food safe class. Can't you see me smile? I have to take a class on how to run his I.V. We will meet with the team of professionals out there: Attending physicians, pharmacists, nutritionists, our nurse who will rule our lives and social workers. I am sure that I am missing people. We were stunned that he would not have to stay in the hospital. It turns out that he will only have a very mild chemotherapy and a radiation treatment. They will not be hitting him hard like he had before. John is very happy about this. He was so dreading being so sick again. Not having to be in the hospital is a bonus. It is a bonus to me too. I won't have to spend days on end there as well. We are hoping to get into the Pete Gross house. All the people there are transplant patients. The coordinator said that it would be especially good for me as I can talk to other care givers who are going through the same things. We can walk to his appointments. They encourage that. Things are starting to sound better all the time. I am a little nervous about being his nurse though but I am sure that they will teach me well.

The Search Continues

Today, at the recommendation of the infectious disease doctors, John is going to be run through the CT scanner. They are going to use radio active isotopes to highlight his neutropenes. Neutropenes are the infection fighter component of his white blood cells. They will take a sample of his blood, infuse it with the isotopes then re-inject his blood. If there is an infection, these cells will congregate at the site of infection and will show up on the CT scan. Infection has not showed up in the blood cultures. If this test returns negative there likely is no infection. Dr. M. says that sometimes transplant patients get fevers simply because the body is working overtime making a new bone marrow. It is important that they are very diligent in the search for infection and rule it totally out of the picture and not make any assumptions because his body needs assistance in fighting any infection.

He is being released from the observation unit. Apparently Dr. M. did want him in this room but feels that he is stable enough and hopefully go into a private room. John has been up and about. Yesterday we went for two long walks around and about the hospital. He is feeling much better.

Ready... Set...

Just so you all know...

Dad's home. He has been since Monday.

I think it would be quite appropriate for you to harass him to write a post for himself.

Aaaaaaaaaaand... GO!

Better? Or not?

At Dad's request I have lightened the background on here just a little. He says he can't read it. Can you read this Dad?

If you can it's probably because I also made the text a little bigger. This should help a lot of you out there. You know who you are.

You may have noticed (if you are anywhere near as anal as me) that Dad's fish has a darker border now, which I find unattractive, to say the least. But I'm not changing it till we find the right combination of font size and background darkness.

So... I await your next command oh wise and blind one. (See how I put the burn after a compliment? That's to confuse him so he just skims to the end.)

Froink! (Updated)

Calling Carrie. Calling Carrie.

Carrie! Why is my picture/scripture (rhymes) getting all squished up like that in the sidebar??? HELP!

UPDATE: Never mind. I give up. I put it in as text. It'll do.