Day by Day

It has been quite awhile since I have written anything. I feel like so much has happened; I don't even know where to start. I'm sure I will leave a few things out, but I will do my best.
It is hard sometimes to get motivated to write everything down.

Well we have had ups and we have had downs. I know for me, the best thing I can do is take it day by day.   Moment by moment. There are very hard days, but the next day I put the day before, behind me. At this time in my life, I am training myself to think mostly in the present. I have to program my brain with good thoughts. When any other thoughts sneak in there, I have to replace it with a good thought. This is something I work on each day.

Josh has had to get LOTS of blood transfusions. While receiving a blood transfusion, the nurse has to take vital signs (temperature, heart rate, blood pressure) every 15 minutes to make sure he isn't getting an allergic reaction. During the transfusions he is in bed, so he has spent most of his days in bed. We were told that each day you spend in a bed all day, under these circumstances, it takes 3 days to rebuild.
Josh is now extremely weak. He can't even get out of bed and stand on his feet for 1 minute without his legs giving out. He had a couple falls last week, so they aren't really letting him out of bed right now. He does have a physical therapist that comes in almost every day to at least stretch his legs out and help him move his body a bit.
He hasn't gone a day without spiking a high fever. He had his highest temperature the other night. When they took his temperature the thermometer wouldn't even read it. It just said "high." They got another thermometer to make sure and it also said "high." After he had been iced and had tylenol in him for 15-20 minutes they checked again and it read 110.5 and that was after it was coming down. It scared me.

When they first started treating him for HLH, the hope was that they could get this disease under control and he could gain some strength back and then do the transplant. This HLH is very stubborn and it hasn't worked out that way. They decided they have no choice, but to do the transplant as soon as possible. So last week Josh did lots of tests. He did a liver biopsy, EKG, pet scan, lung tests, and others. They have to make sure he doesn't have any infection. He also had a port surgically placed. He failed the lung test. They said it should be close to 100% and it was at 28%. Under normal circumstances, they wouldn't take a patient into transplant if they had results like these. Ideally, they like them coming into transplant a whole lot stronger. They don't have much of a choice with Josh because his disease is actually what is causing all of these problems. So the transplant is what will actually heal him and solve the problems he's having such as the respiratory problems, as well as the fevers.

Monday, after receiving a test in his lungs that causes a lot of stress on Josh's body, his blood pressure went really low. Tuesday morning we were moved into the bone marrow transplant unit. After being there only a couple hours, we were moved to the ICU. His breathing was very fast, his blood pressure was low, and his heart rate was creeping up. They put the pressure mask on him that helps him breathe.
All the Doctors were discussing if they need to hold off on his chemo. This chemo they are going to give him is a 14 day regiment of very intense chemo that wipes out every cell. They wouldn't normally give this intense of chemo to somebody in the state that he is in. They have to take his immune system to zero in order to give him a new immune system from his sister who is so very thankful for the blessing of being his donor.

Yesterday (Wednesday), was a scary, stressful day. Josh's heart rate went really high--220 beats per minute. He was breathing 40-50 breaths per minute. Normally, we should be breathing between 16-20 breaths per minute.
They poured medication in him quickly hoping to see that heart rate go down. It went down, but was still very high. He spent most the day in the 160's--at least 10 hours. There was a lot of talk of putting the breathing tube down his throat and sedating him. We prayed and prayed that they wouldn't have to. Dan gave Josh a blessing. They have the ventilator here in the room just in case.

They decided to give him a smaller dose of the chemo to test out how he does with it. With this disease he will only get worse without it. Although the chemo has side effects and they say it may only get worse before it can get better. They keep him on benadryl and tylenol constantly while he's on this chemo because it can cause allergic reactions.

Dan and I were nervous to go to sleep last night, not knowing for sure what the night would bring. Between the benadryl and sleeping pill our sweet Joshey slept pretty good! I woke up at 3 in the morning to check on him and his heart rate was down in the 90's!!   : )

He is still a little delirious. So far, it seems as though he is tolerating his chemo well. The doctors say they are pleasantly surprised! They were able to change him from the pressure mask to nasal oxygen and all his numbers are good. He's on a lot of medication. He also has a feeding tube.

Today is a better day. We are happy to see him sleeping. Each day, when taking it day by day, I learn the same lesson over and over again. It's the little things, the details that make up each day that need to be appreciated and not taken for granted.
My favorite quote that will be hanging on our wall....

"Enjoy the little things in life, for one day you will look back and realize they were the big things."

How sweet it is to simply get a smile out of my husband. How sweet it is to hear him say he loves me. How sweet it is to see improvement, when the day before, not knowing how we'll make it to the next.

I have so much in my heart I'd like to say, but I don't know how to say it all. It can pretty much be summed up in three words. I am thankful.