Many Disappointments Day 57

I want to begin by finishing the story on Doris from yesterday. She was a sweet lady getting a allogeneic transplant while Stevan was finishing up his at the first of June. As I said yesterday when we got to Dr Holters office I saw her and began catching up with her and her husband. She wasn't feeling good and her husband was very concerned since she was sicker now than she was in the hospital. Before we went in for Stevan's appointment, Doris came out from seeing the doctor. I wished her luck and I hoped she got to feeling better. She simply said "We are going back to the hospital now." I can't tell you how much my heart hurt at that moment for her and her family. This was the beginning of our disappointments for the day.

We had been visiting with another couple, where the husband had been released from the BMT unit the Monday before Stevan. His wife, I discovered had been a nurse. She would get so frustrated with him because he wouldn't do what the doctor had told him to do. Her and I had a lot in common! LOL. He had been doing well, but he also was on an antibiotic for some kind of infection. He only had to take it twice a day. And like me, she has had to revolve everything around his medicine schedule. She said she felt like a jailer trying to make her husband do all the things he's supposed to do or keep him from doing. LOL. We shared stories and it made us feel so much better knowing we were not alone!

I can't remember exactly what was said after we got into the exam room, but this is close to how it went. Dr Holter was the only doctor in the office and the Physicians Assistants were taking the patients with general visits... yes that was us. The PA was nice and asked all of the general questions... how was he feeling, any coughing up blood, fainting, swelling, fevers... She listened to his heart and lungs. The only other thing I really remember her saying was... "It looks like we need to do a tandem. But we are ordering another round of labs to make sure." My question, "Does that mean there was an M-spike in the last set done at the last visit?" PA, "Yes, it appears there was still evidence of an M-spike. But sometimes that is the case so quickly after a transplant, that is why we want to go ahead and run labs again to make sure." The PA never said how much of an M-spike there was on the labs. I will be putting together some questions to either call and ask one of the nurses next week.

A nurse came in and we asked more questions, "How quickly are they wanting to do the tandem?" Nurse, "As quickly as possible. We will have to wait until he is done with his antibiotics for his bone infection, but as soon as that's done then yes he will be ready to do the transplant." Us,"Will he have to take more oral chemo before he goes back in for the transplant?" Nurse, "No, unless he waits several months to do the transplant, then yes." Us, "Will he need to have more tests done before the transplant, like before, on the heart and lungs? And if so, will it take as long to get his insurance to approve of the transplant?" Nurse, "Yes. Matter of fact we can go ahead and get those test done while we are waiting for approval and while he is finishing up his IV antibiotics."

Stevan will finish up his IV antibiotics, Vancomycin, on Aug 8th. Pattie, the BMT nurse coordinator called this morning to tell us that his Heart and Lung test will be July 27 in the afternoon. We will then have to go back over to the infusion room for more labs to be done for pre-transplant. His next appointment with Dr Holter is on Aug 15, which will will be able to ask more questions and get a date for admitting him for the tandem transplant. The nurse yesterday said it could be the following Monday, Aug 20, (the day I am supposed to go back to work).

Stevan is upset and of course disappointed. He said originally he didn't want to do the transplant, but God moved him to do it. Yesterday in the doctors office, the first thing he said was, he wasn't doing another one. He missed out on deer season last year, he wasn't missing it again this year. Then he said he'd wait till Christmas to do it. Last night we got alone, we talked and he's feeling hurt and disappointed. I pointed out the fact that his first transplant, went so well and fairly easy, compared to others we have read about. And if he considers the fact that now almost two months out he can do just about anything he wants (within reason). I told him that he really should just get it done as quickly as possible, so that he can get it over with and be ready to hunt at the end of October, when muzzleloading begins. I think it is beginning to sink in now.

There are still a lot of questions to be answered. I'm not sure how much I will be able to stay with him this time around. We know what to expect this time around. I will have to talk to my principal and see what I can do. I hate missing out on the first of school. It sets the tone for the rest of the year. But as it should be, Stevan is my main concern.

Thank you for the continued prayers.

Transplant - Day Zero

The magical bag. The red stuff is the stem cells

Now we start counting our days up from today, even though we have already been in the hospital 3 days. Transplant Day is considered to be day zero, his birthday as they call it.

This morning started earlier for Stevan than yesterday. I was able to get him up to eat and shower before the doctors made their rounds at 10am. Yeah, rough huh! Grace is our nurse again today and she gave him his pre-meds; Tylenol, Benadryl, and Hydrocortisone 30 minutes before the transplant. Within 5 minutes of receiving the Benadryl, he was out! He’s apparently very sensitive to it.

They had around 2.6 million cells in three bags. It took about 50 minutes to have all three thawed, verified and dripped through the line. I had been told that the preservative that the cells were in smelled like cream corn. It does. I actually couldn’t smell it at first, but an hour after transplant, I went to open the door to leave the room, I caught a whiff of the smell. It must be coming from Stevan’s pores in his skin. Even five hours later, the smell is even more potent in the room. I’m not sure I will be able to eat cream corn again.

Wearing his other "vacation" shirt, this is what
he's done most of the day.

Our pastor, Brother Mike showed up this afternoon. What a wonderful surprise! He couldn’t stay long, but it was nice to see a familiar face, a long way from home.

Anabel, from Physical Therapy, also came today to give him a list of exercises that he needs to do each day to keep his strength up. He didn’t look that interested in doing them. Matter of fact, this afternoon was the first time I had been able to get him up and out of the room to walk the hall in the unit, all of about 40 yards in length.

We are sitting tight, enjoying the lazy days and watching TV and movies all day… yeah hard time, I know. It’s just another day in the BMT Unit.

I have been working on fixing this site so that you can post comments on each blog. Not sure if I've got it fixed or not. I changed a few things, so let me know. Thanks Pat for pointing that out to me.

Expectations

What are we expecting at the Bone Marrow Unit? Many have asked if he can have visitors, the answer is yes. They have a very open visiting hour policy, except for three times during the day, 6:30 to 7:30am, 2:30 to 3:30pm, and 10:30 to 11:30pm. During these times the nurses will be giving shift reports. Children under 14 are allowed to visit (with some restrictions due to the increase incidence of and exposure to contagious conditions.)  Of course if you are sick we ask that you don't visit, but anyone can come visit if you are in the area. If you can't visit, he will have a mailing address while he is there for you to send him well-wishes. We don't have a room number yet, but I will post as soon as I know.

OU MEDICAL CENTER/Presbyterian Tower
C/o The Bone Marrow Transplant Unit/room #______
700 N.E. 13th Street Oklahoma City, OK 73104

The Bone Marrow Unit is an 8-beds intensive care unit. The rooms have a positive-pressure HEPA filtration airflow system. It's designed to help protect patients from infections. Stevan will be able to walk out into the hallway with a mask, but no further than the double doors leading out of the unit.  Stevan will have a daily routine with chores that must be completed each day. These will be divided up between the 3shifts.

Between 7am and 3pm, he will either bathe with anti microbial bath towelettes or soap. If he feels too sick, his nurse or I will assist him. The daily bathing will help control the growth of  bacteria on his skin. His bed linens will be changed daily as well.  He will be weighed between 3 and 9pm. Finally at midnight, the nurse will draw his daily blood labs. He will constantly have his vital signs, his temperature monitored, blood pressure, heart rate, and respiratory rate every 4hours. They will be monitoring all of his fluids he receives and he eliminates. He will have many resources available to him while he's there. A physical therapist is consulted for every bone marrow patient. They will visit him daily. The therapist will help him to exercise and maintain his strength. This is one of the keys to him being able to go home. A dietitian is also consulted with to help him get the foods that he can tolerate or help with special snacks or request. Social services will be consulted to help with financial aid, medications, home health care and a variety of other needs. A chaplain will be available to him during his stay as well.