Susan here...
We went to Denver today to Children's Hospital. We were expecting a quick appointment with the Doctor but got a 1/2 hour meeting with the social worker and 2 hour consult and tour with the head of the Bone MArrow Transplant center. He gave us so much information and I will try to summarize.
As far as the stem cell harvest goes we will go in at 8:00 am Tuesday morning. He will be in a private room with a dvd/vcr combo and TV. We will bring him some toys too. They anticipate it taking 4 hours or longer if they need to do a blood transfusion first. They will use his Broviac and run his blood into a machine where it will remove the stem cells and then transfuse the blood back into him. They will run 4 times his blood volume through it and then see how much they got. They anticiapte it taking 2 days to do the collection. They make sure to collect extra in case of any problems (bags breaking etc) and also in case he needs some more stem cells later. NAte will be an outpatient so we will go home and come back in on Tuesday.
We talked a bit about the stem cell transplant. First off we met with a social worker. She talked about lodging and other logistical things. She told us he would be in the hospital for a month and then need to stay in Denver for 2 more months. We were shocked by this - but when we talked to the DR later he said we could work things out between our doctors and them and that he would probably only need to be in Denver for a couple of weeks after discharge. There is an apartment building just for transplant families to live in after discharge where we can stay (and Julia too). During the transplant while Nathan is hospitalized we will stay at the Ronal McDonald house. Julia can be there with us too. We don't know how much we will have her with us but it is a relief to know it is an option.
He showed us the transplant unit and offered to take us in if we wanted to get scrubbed up and gowned but we didn't feel the need. It is a sterile unit with hepa filtered air. Inside the unit there is a plaroom and a family room. It is nice to know there will be a safe sterile place for him to be able to be besides his room during his transplant.
We really like the doctor. He went to Northwestern University for his undergraduate degree so Luke was happy about that. He talked to us about some of the next steps we might take if NAthan's treatment doesn't go as planned. We have known about some of these things but NAthan's doctors haven't really talked much about them. We feel he will be a good resource later on as well as a good doctor for Nathan's transplant.
Nathan was very very good. We left home and noon and retuned at 6:30 and he didn't cry but once, when he fell down. He was very well-behaved and played nicely for a long time while all the talking was going on. He wasn't at all intimidated about being in a different clinic and hospital with different doctors. We are so impressed with him.
The hospital seem to have really nice ammenities for everyone. It would have been nice to be close to go there for everday care. We are lucky to only have to drive 15 minutes or so to go to the clinic as often as we go so we are not complaining.
His counts were very good. They faxed them to his Doctors here and they called and said he doesn't need to bother coming in tomorrow. So - hopefully we will go play with his friends tomorrow instead.
That's it for now!
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