Last night, we went to give Benadryl via IV to make Ella sleepy. After 10 minutes, I noticed that Ella was still very awake and cranky, but not sleepy. Then I noted that her diaper needed to be changed. As I changed the diaper, I saw part of the IV cord unattached and loose in the bed. I hit the “stop” button on the IV pump and called the nurse in. She could tell that Ella likely had not received the Benadryl, so she had to reorder it.

In the meantime, the IV pump kept giving an error that it was occluded. After a bunch of diagnosing with the tubing with lots of trial and error, she ended up at the IV site. It looked fine but then wasn’t flushing. So then we feared that the IV might have gone bad although it did seem odd that it was perfectly fine one minute and then not good the next. So, there were 3 nurses in the room hovered over Ella and holding her arm, trying to keep the IV. Finally, a certain tweak worked and the IV successfully flushed. Then they had to re-secure the IV in place. Ella was fussy and cranky from them messing with the IV and holding her arm tightly over such a long period of time. Finally at 2am, the Benadryl hit and she went to sleep.

One good thing before the IV scenario started, we stopped the Dilaudid drip and so this would be her first extended period off any narcotics/pain killers. Now if she needs pain meds, we have to request Tylenol or another drug that we would give to her via her g-tube, similar to what we would do at home.

Also before going to bed last night, she became “even” with her ins/outs and did not require Lasix! She woke up once at 3:45am and seemed to be having the same cramping pain by puling her knees to her chest. After 5 minutes, she went back to sleep.

In keeping with tradition, the surgery team came in at 6am to discuss how she has progressed. In a fog, I did my best to give them an update on her status. They are responsible for her pain management and getting her feeds to be successful. We gave small boluses of Compleat Pediatric today starting at 10am (60ml), 12pm (80ml), 2pm (100ml), 4pm (100ml), 7pm (150ml), and 10pm (150ml), for a total of 640ccs food and 27ml via IV. We’ll see if she can tolerate the larger boluses of 150ml. I was a bit hesitant, but the surgery team wanted to move quicker, so I conceeded. One thing is for sure – she will let us know!

I tried to let Ella sleep longer today, but she was awake by 10am. The pulmonology team let me know that she was 500 positive for fluid and recommended Lasix plus a dose of Potassium along with labs later in the day. I requested that they hold off, let Ella wake up and see if she catches up. Sure enough by 2pm and a few feeds later, she was even on her ins/outs for the day. I was so happy that we skipped the diuretic, but more elated that we bypassed sticking her!

Another issue: poop. Once again, she was not going on her own and I voiced concern over being too aggressive with feeds if she was not going to the bathroom. So, we ended up giving another suppository and it worked again! This gave me the peace of mind to keep increasing her bolus feeds throughout the day. This evening, we gave another dose of Miralax but doubled the amount to 1/2 capful (8.5 grams). If she hasn’t gone again by 12 noon tomorrow, we might be using another suppository.

Throughout the day, she felt good but was a bit more whiny, but it seemed like it was simply from not getting enough sleep. Maybe she’ll go to sleep earlier or without Benadryl tonight.

We finally got a consult from neurology but it was uneventful. First, there was an EEG ordered yesterday and they came to do the test and I told them that I wanted to discuss it with a neurologist first. I did not understand the benefit of the test; they ordered it thinking that Ella was continuing to pass out and would give them a pass out spell while conducting the test. I wanted to make sure there was benefit to the test besides the pass out spells. Plus, I had heard that due to the recent narcotics in Ella’s system, it would not be ideal to have an EEG right now and we should schedule one in a few weeks. But then a different resident would tell us that the narcotics would not skew results and it would still be good to get the test now. The inpatient test takes 24 hours and an outpatient test takes anywhere from 30 minutes to 4 hours.

After discussion with the neuro team, we opted against the EEG. The neuro team strongly recommended this test if we suspected seizure activity (like her pass out spells were involuntary). Since we’ve not seen any clinical signs that lead us to believe that Ella is having seizures, there is no need for the test. I really was hoping for more specific info on the MRI findings, but it sounds like I will have to wait until the outpatient appointment to address any of my concerns.

At a high level, the results sound about the same: a small portion of L parietal lobe damaged as well as global cerebral atrophy (her brain is much smaller than a healthy kid her age). But I did not get to see the MRI images nor collect any useful information as far as what this actually means in our day-to-day life. At the very least, the test is complete and provides a baseline in case we need to compare it in the future when she is older and/or if she does begin to have any other issues, such as seizures. They did mention that her risk of seizures is 50% higher and that we should always be on the lookout for any changes.

Ella’s occupational therapist came to visit her and brought her a new book. She seemed disinterested at the time, but then I looked over later, and she was checking it out!

The best news: we are making great progress with feeds and are just trying to not be too aggressive, but move Ella off the IV pump and on to 100% feeds. Along with that, making sure that her GI system responds. If she keeps this up, I think we may be able to go home in a few days and finish the remainder of the transition at home. I have never seen Ella recover this quickly from a surgery. I’m still in a bit of shock that we’ve only been here a week and that she is doing so well.

Thanks for all the continued thoughts and prayers for our sweet Ella Renae.