I am really tired, so I’m going to try and make this short and sweet.
Ella went to sleep around 11pm last night. By the time I went to bed, it was 12:30am. So I was a little more than bummed when Ella decided to wake up at 6am. Did she really just want to make sure that she could meet the surgery team for rounds this morning?!? It is predominately boys and she tends to like guys better. I’m not sure, but as I was brewing coffee in my hospital room and trying to regain my senses, I had to shake my head at the crazy monkey. Most nights she is up partying and this morning, she wanted to see the sun rise!
We had a chest xray this morning and compared it to the one taken right after surgery. After surgery, the area of surgery in her chest was empty and black on the xray. This morning, the area of her chest where the colon was removed has now filled with fluid. This is a normal response on the part of the body. However clinically, she is doing fine and so they are not making any treatment plans for it. Her breathing is not labored breathing and she is not requiring more oxygen. From a fluid standpoint, she is a little positive but is maintaining fine. The last dose of Lasix was Monday.
Sure enough, Ella needed a nap today since she was such an early bird. I love watching her sleep.
There were not a lot of changes today – mostly just working on feeds. We tried to give 835ml of food and 80ml of pedialyte: 8am (100ml), 10am (100ml), 12pm (100ml), 2pm (100ml), 4pm (100ml + 20ml pedialyte), 6pm (110ml + 20ml pedialyte), 8pm (110ml + 20ml pedialyte), 10pm (115ml + 20ml pedialyte).
This morning, she was uncomfortable after the second feed. At first, I thought she was just tired but then she started drawing her knees up. When I vented, I was not able to get much return. My theory: she needed to poop. So, we gave another suppository. Within an hour, she filled her diaper. For the next four feeds, she was great and feeding her did not cause any discomfort. At the 6pm feed, we gave 1/2 capful of Miralax. But when we reached the 8pm feed, she still had not gone to the bathroom and was definitely in pain.
When I vented, she pushed out 90ml of food (the total feed was 130ml). So, I spoke with the nurse and asked if we could give another magic bullet. I did not want to give another feed unless she went to the bathroom. It was frustrating that it took an hour to get the suppository from the pharmacy, but we gave it and it worked again. Then, I just put the 90ml back into her from the earlier feed and wrote off the last feed. You could tell that she felt SO much better.
We’re planning on increasing the feeds tomorrow again too. Knowing that we are giving more volume and that the Miralax is not doing the job, I think we will request to schedule 2 suppositories. It is a safer bet and she will be more comfortable.
Right now, we’re trying to get her feeds to at least “maintenance fluid” levels which is 1120ml per day. Her nutritionist wants her to have 1300ml per day to gain weight and have all her nutrients. But as long as we can reach maintenance fluid levels and she will not get dehydrated, you can be discharged from the hospital. Tomorrow, we’re going to try and reach the 1120ml per day, so we can get rid of the IV. If everything continues to go well, I think the soonest we will go home is Friday or Saturday. Besides having to do 8 or 9 feeds per day initially, we will likely also have to give suppositories. Neither is ideal, but it will allow us to go home faster!
Closing up this post now because my blow-up bed on the floor is screaming at me to come lay down and surrender the day…
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