+38 NG Tube Goes In, Oral Prograf Goes Out

WBC 4500
ANC 4004
Platelets 105k
Hemoglobin 12.9
Weight 11.4

I'm on edge tonight. I feel nervous and anxious. David had a hard day. I'm not sure what will happen next week.

The oral meds are not working. They tested his Prograf level today (done by blood sample) and it was not therapeutic. That means for the last 3 oral doses, he had spit some out so his body did not absorb all of it. He needs to absorb all of it. They increased the dose. It's still not much but he will not take it. I cannot see any light in the tunnel. The only other option is to give Prograf by 24-hour IV. Again, it cannot go down his NG tube b/c it tends to stick to the tubing. They had another patient on Cyclosporine (given by the NG tube) and he broke out with GVHD, which they say was caused by the drug sticking to the tube. If anyone knows anything about Prograf, please email me. He needs to take Prograf for at least 9 months, according to Lizzie. I cannot imagine him carting a backpack around for 24 hours, for 9 months. That is not living a normal life. Please pray for the best solution to this crazy problem...all b/c he is 2 years old and will not take his oral meds.

His NG tube went in smoothly, although, he was red-faced and very upset. Breastfeeding helped calm him down. He tried to pull it out a couple of times. He had a lot of people come play with him today, which was a nice distraction. Thankfully, he is able to breastfeed, eat and drink normally.

Ronald McDonald House is packed. There is another BMT family, besides us, who is leaving on Tuesday too. We are competing for the same room. It's crazy. I would like to go directly to RMH instead of a hotel. Please pray for the situation to work out for the best for both of our families.

p.s. We've had several people come talk to us about the oral meds. Here is my response:

• No, he will not take medicine by mixing it up in pudding. For one thing, he does not like sweets. It's a struggle just to get him to eat his other food, in which he feeds himself. He does not want me feeding him...he's 2 years old.
• No, there is no special toy, bubbles, music, videos, or anything that will distract him.
• There is no reward big enough. He cannot put two-and-two together yet. He is not ready. He could care less.
• He loves to play "give Elmo medicine" but it does not help when it comes time for him to take medicine. Even his sisters showed him how to take medicine (water in a syringe) and were laughing and having lots of fun. He trusts his sisters, but not with fake medicine. He wanted nothing to do with medicine play.
• Yes, I've tried plugging the nose, pinching the cheeks, leaving the syringe in the mouth, putting the syringe as far back as I could, rubbing his throat to coax swallowing, putting his head back. He knows how to bubble it, gargle it, spit it, blow it. He is smart.
• Is there anything I've forgotten? Please email me.