One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Sunday, April 29, 2007

Two months

Yesterday was two months from James' diagnosis. During those two months, we have been in one hospital or another for all by three days. For those who are wondering, this is NOT typical of most children diagnosed with Acute Lymphoblastic Leukemia (ALL). Just this week, we met a little girl named Kate who just got her ALL diagnosis. She is going home today. However, James is, well, James is James and he just likes to keep us all on our toes!

Today, James is getting formula through his g-tube at 35 ccs per hour. The goal to meet his calorie needs is 40 ccs per hour, which we should hit today around 2 p.m. An hour later he will be off his TPN.

He is also being weaned off Dilaudid (which he has been on for pain since his ileostomy) He probably doesn't need it anymore, but it must be cut back very slowly to avoid withdrawal symptoms.

After midnight, James can have nothing by mouth (NPO) to prepare for sedation for a Lumbar Puncture (LP) tomorrow at around 9 a.m. During the LP, he will get methotrexate and then he will get more by IV over a 24 hour period. James will then be monitored regularly after the IV is done until the methotrexate in his blood gets down to an acceptable level.

In the meantime, he will need to keep feeding. I am not sure what the exact plan is, but I am hoping that James will get to eat food and have bolus formula feedings during the day in order to encourage him to eat, then get formula at night to supplement.

IF the discharge nurse and the team here can figure something out for James' home care AND he does well with feeds and the methotrexate, there is a possibility we could go HOME on Thursday. Need I say I am VERY excited about this possibility. We will have to be back here next Monday (not sure if in the hospital or just in the clinic) for his Vincristine (the chemo drug we all believe has caused the bulk of James issues over the past two months).

Please pray:
  1. that James will continue tolerating his tube feeding increases well.
  2. that he will come off the pain medication with no trouble.
  3. that the methotrexate will fight any leukemia cells, but not harm James or give him any side effects.
  4. that the nurses CAN figure out a way to handle James' home health care so we can go home.

Thanks for checking on us! We love hearing from you. Please leave us a comment or e-mail us at our regular address (if you don't have it, post a comment with your e-mail (it won't show up, I promise) and I will e-mail you.

Love, Stephanie

Nan, so glad you had a nice birthday.

Ann, hope your computer is up and running soon. I miss hearing from you. Hope Kelsey and the baby are doing well.

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