Our Boy is Home

What a huge relief to be home from the hospital! We were supposed to be discharged in the "early afternoon", which in hospital-speak actually means 6:00pm. Traffic from the holiday weekend was horrible, so the home care nurse who was bringing our supplies to the hospital and teaching me how to do the new stuff said it took her 2 hours to get to Emanuel from Beaverton. Ugh! Then they had forgotten some key supplies {hello, the pump for James' TPN!} so we had to wait another hour for someone else to bring them. Annoyances aside, we made it home and James was one happy camper! I was worried that being in the hospital so long would throw off his sleeping schedule at home, but apparently he's just as exhausted as the rest of us...I put him down at 8:30 last night and it's now almost 11:00am and he's STILL SLEEPING! Poor little guy.


While the surgery allowed us to get rid of some medical stuff {no more nose tube or ostomy}, it produced new tasks for us to do every day. He's still on an IV antibiotic every 6 hours around the clock until next week. He's now on TPN {IV nutrition} for 24 hours a day instead of 20, since he's not yet able to tolerate formula. He's putting out a lot of fluid from his stomach into his G-tube, so we have to measure and record that, add it up over 12 hour periods, and then give him doses of IV replacement fluids twice a day for 4 hours at a time. This wouldn't be so bad if we could do it like they do in the hospital...just hang an IV bag and let it drip...but since the volume we need to give him every 12 hours fluctuates, we can't use a normal pump. We have to calculate the volume he needs, use a syringe and needle to draw the fluid up from IV bags, and then change it out *every hour* in the pump...from 5am to 9am and again 5pm to 9pm. TOTAL PAIN IN THE REAR if you ask me! But you know what, we're doing it AT HOME! I'll take the inconveniences over being stuck in a hospital room any day!! Our docs said if this was any other family there's no way they'd send us home with all this to do, but we are a persistent bunch and have proved ourselves capable! :-)


As I laid in bed last night, my brain would just not shut off, swirling around all the new tasks and schedule and not wanting to miss anything. So I typed up a schedule. I've included it here so that one day I can look back and remember what these crazy days were like...

James’ Medical Schedule

5:00 am tasks

• diaper change & temperature

• measure G-tube output
• add up 5:00pm to 5:00am total volume
• determine 4+ hour amounts for IV replacement fluids
• prep 4 syringes with fluids/red caps/prime tubing
• record on chart
• start 1^st syringe in IV pump

• give antibiotic: 5 ml saline flush, push antibiotic for 5 minutes, 5 ml saline flush

6:00 am 7:00 am 8:00 am		start new IV syringe in pump every hour

11:00 am task

• give antibiotic: 5 ml saline flush, push antibiotic for 5 minutes, 5 ml saline flush
• give Actigall meds

3:00 pm task

• set out TPN and supplies

4:00 pm task

• prep TPN

5:00 pm task

• start TPN
• give antibiotic: 5 ml saline flush, push antibiotic for 5 minutes, 5 ml saline flush
• give Actigall meds

• measure G-tube output
• add up 5:00am to 5:00pm total volume
• determine 4+ hour amounts for IV replacement fluids
• prep 4 syringes with fluids/red caps/prime tubing
• record on chart
• start 1^st syringe in IV pump

6:00 pm 7:00 pm 8:00 pm

start new IV syringe in pump every hour

11:00 pm tasks

• give antibiotic: 5 ml saline flush, push antibiotic for 5 minutes, 5 ml saline flush

{Check out my new tummy! Those scars are healing nicely. Wondering what that thing is on the right side? Our surgeon's high-tech device for keeping the stomach tube from bending/pulling out...a bottle nipple! The tube is about 1 foot long coming out of that, with a "urine sample" cup on the end, then a diaper wrapped around it to catch the leaks. Glad this set-up is only for 6-8 weeks, when they'll switch it out for a flat little button on his tummy!}

All the nurses who cared for James commented on what an adorable, happy little guy he is and we couldn't agree more! We love you, buddy!