Posted (Tina) in All Posts on January-10-2011

Ella woke up once last night at 4am, after the nurse completed an assessment. I could not get her to go back to sleep, so we gave her another dose of Benadryl. Sure enough, that seemed to do the trick and she went back to sleep.

So far, I am completely in shock at how well Ella has recovered from this major surgery. She slept until 12 noon (I did my best to keep everyone away from her and give her the most beauty sleep possible). Once she woke up, the plans from rounds were put into place.

First, we went ahead and decreased the Dilaudid drip from 12 to 10. This is the lowest the continuous drip can go. The plan is to turn it off when she goes to sleep tonight. I have not had to give Valium at all today. She is in a great mood and seems very comfortable. A few times during the day, she has tried to sit up and move around. Quickly she realizes that her abdominal muscles were cut just a few days ago and it causes her pain to move around. So, she knows her limits and just lays back down. Although late tonight as I type the post, she has been sitting up a ton, even standing. The nurses are walking in, doing stuff to her and she is fine. Two days ago, she would lose it if a nurse even walked in the room. Another sign: she loves playing with her computer and I know you’ve all seen her exploring with her tongue. Today she started licking her computer. This is how I know she is feeling good!

Weaning her from the narcotics is a huge step forward. First, it just means we’re closer to going home. Second, they want to do an EEG and narcotics throw off the results. Third, the narcotics can slow down her intestines. We need for them to wake up and work!

We have not given Lasix yet today, but that may change this evening. We’re trying to wait and see if her body will respond on its own. The last couple of days, we’ve been able to get away with a single dose each 24 hours. If she is positive by 300 or greater at midnight, they will give another round of Lasix and Potassium. The bummer about that part: it means that we will need to do follow-up labs tomorrow and stick her. So, pray that Ella’s normal prescription of diuretic to do the trick (Aldactazide) and she will start to pee a lot.

There was some discussion today that it might be favorable to go ahead and stimulate Ella’s intestines. Rather than another suppository, we opted for a less aggressive option: Miralax. The dosage written by the docs was small: 1/4 capful per day. There have been times that Ella has required 1 full capful per day, so I’m not sure if 1/4 capful will stimulate the intestines enough. But they want to start small and increase only if they see her not going to the bathroom after a couple of days.

We gave small boluses of Compleat Pediatric today starting at 10am (40ml), 12pm (60ml), 2pm (60ml), 4pm (80ml), 6pm (80ml), 8pm (80ml) and 10pm (100ml). So far, so good. When I decompressed between feeds, I was only getting 0ml – 35ml drawn back. And when it would go in via gravity, she did not seemed phased at all. I’m excited to get food in her – – she is SO skinny. Moreover, there has not been any retching. This has probably been the largest benefit to changing to a blenderized diet – no retching since the first week of November. And even though Compleat Pediatric is canned, it is still a blenderized diet. Who would have thought that giving her real food versus commercial formula would just make that horrible experience cease? We’ll just see how her intestines like all of this action since her colon was rearranged in surgery! Hopefully, her sulfasalzine medicine is keeping her colitis in check and so her intestines will not be too upset.

To compensate for her fluid levels, we turned down the IV pump to 33ml/hour (it was 45ml/hour up until today). So this means she is getting 500ml of food and 800ml of IV fluid. I think we’ll likely keep the food situation similar tomorrow, maybe increasing feeds only slightly until she stools. I’m concerned about being too aggressive with the feeding plan because I don’t want her to back up. That will make her really uncomfortable!

And so far today, I have not head her draw her knees to her chest and desaturate or have any pass out spells. Plus, I have heard her toot a couple of times – that is a good sign.

Neurology was supposed to come and visit us today and it didn’t happen. So, I expect that we will be hearing from them tomorrow.

Regarding Ella’s CDH buddy, Elijah had another surgery this morning. Unfortunately due to the swelling, they were only able to close him 2/3 of the way. It will be a gradual process fitting all of his organs back in, but they are hopeful that they can close him up completely by the end of the week. So please continue to pray that they can keep him comfortably sedated and that he does not get an infection! He is stable, but still very sick. Also, that Ella starts to pee and poop (on her own as much as possible), that her IV stays going strong, and that she can continue to tolerate feeds.

1 Chronicles 29:13 (NIV)
Now, our God, we give you thanks,
and praise your glorious name.