Ella had a great night. She only woke up once around 3am with some pain. Again, we think it is sharp, cramping GI pain. Once it passed within a minute or two, she was fine and fell right back asleep – snoozed until 11am (about 12 hours). We had a great nurse overnight that was very stealth – this meant Mom caught some zzzs too!

Ella enjoyed playing with her new teddy bear again today. Plus, the bear was joined in the afternoon by a penguin! Now Ella has 2 buddies to keep her company in her crib.

Today, we were able to take several steps forward on Ella’s progress. Here are some of the highlights:

1. We decided to try and wean the Dilaudid drip down a notch. That seemed successful.
2. We gave Valium at 11am and once again at 8pm, so definitely less often than 1x/every six hours. We will probably try weaning the drip even further tomorrow(Monday).
3. We’ve only given Benadryl once each day; mostly been effective at putting Ella to sleep.
4. Surgery gave us the thumbs up to remove the foley catheter.
5. In order to try and stimulate Ella’s colon, they placed a suppository this morning. After a couple of hours, we had more than a smearing of stool. Success!
6. With the foley catheter out, we have to do daily weights. Ella weighed in at 12.3 kilos (27.06 lbs) down from 12.6 kilos (27.72 lbs) the other day upon hospital admission.
7. Since Ella has not had any food since last Tuesday and she is rapidly losing even more weight, we consulted with Surgery and came up with a plan to introduce food.
8. Also, we were able to negotiate not using the food pump to introduce food back into her system. We gave small boluses starting at 4pm (10ml), 6pm (20ml), 8pm (30ml) and 10pm (40ml).
9. Instead of venting her g-tube continuously as the docs originally wanted, we convinced them that Ella does well with us manually decompressing and drawing back every so often.
10. Her IV pump is still running at a rate of 45 per hour (1080ml in a 24 hour period; maintenance fluids). Plus, we gave her 100ml of food.
11. By the end of tonight, Ella needed another dose of Lasix – she was about 400ml positive. So, they gave another round of Lasix plus chased it with a dose of potassium(I just changed a diaper that weighed 431 – that is a record!)
12. We advocated to not feed Ella overnight since we will not be doing this at home. The closer we can work towards replicating our home routine, the better.
13. So far, there has been no retching from the Compleat Pediatric formula and she has taken the small boluses via gravity just fine. WOW! We have a long way to go, but the initial success is reassuring.
14. She still has intermittent GI discomfort and will out of the blue, draw her knees to her chest and cry real hard. We did have 2 pass out spells today along with many other incidences that were close calls.

Tomorrow, we expect to hear from Neurology regarding the results of her MRI last Wednesday. We hope that will give us a better indication of how Ella’s brain has developed and how we can take that info and make good use of it.

Thank you for all the thoughts and prayers. As you can see, Ella is making great progress and we’re thankful for her success. We’re hoping to be able to have more success with feeds tomorrow and continued comfort from a pain standpoint as we further try to wean the pain meds. Finally, as we begin to transition to more and more food and become less dependent on the IV fluids, that the IV will last through this transition and that Ella’s GI system will cooperate.

1 Chronicles 16:34 (NIV)
Give thanks to the LORD, for he is good;
his love endures forever.