Last night, she was able to sleep for stretches of 1 to 2 hours at a time.
However, she continued to be in a lot of pain this morning.
Here is where we are with pain management:
- We met with Dr. Grayhack and he ordered yet another IV pain med, Toradol. We think it might be helping!
- We stopped the analgesic (nerve-block) in her epidural, but we are keeping the actual epidural in her back. Once we see that she is ok without the analgesic, we will remove the epidural and urine catheter (currently planning for this to happen tomorrow morning).
- Tomorrow afternoon, we will try switching from the IV Dilaudid to oral Oxycodone (in her g-tube), both strong narcotics.
- In order to go home, we need to see that she can be off all IV pain meds, including the new Toradol that we just added today (only available through an IV).
- She will go home with Oxycodone, Gabapentin (nerve pain med), Valium and Tylenol for pain.
Ella's heart rate has still been consistently very high. It has never dropped below 145, even while sleeping. Hopefully once her pain is under control, we will see these numbers start to drop closer to her normal range.
The other challenge we have to conquer before going home is getting Ella to tolerate her feeds. We have made some definite progress with that today!
- This morning we once again tried a very bland version of her formula at a very slow rate and she has been tolerating it so far!
- Every 4 hours, we will increase the rate by 5mL/hour until we get to her normal rate (hopefully by Saturday).
- If she tolerates the bland formula at her normal rate, we will make her regular formula and give it to her at that rate. We will observe her with this for 24 hours to make sure she can tolerate it (if all goes well, this will bring us to Sunday).
We also have to learn how to change Ella's diapers with her cast (since she can't sit on a toilet with her cast on, she will have to wear diapers for the next 6 weeks). Once her urine catheter comes out (most likely tomorrow), she will start to have wet diapers. We also have to make sure Ella has at least one bowel movement before she goes home. She currently doesn't have much in her stomach and the anesthesia and pain meds make her constipated. Once we start giving Ella her regular formula, she'll be getting Miralax and Colace (stool softener) to help the process along.
While we are not yet in a position to start planning a day for her discharge, we at least know where she needs to be in terms of pain management, feeds and going to the bathroom, and we're moving in the right direction :)
Ella has definitely been in better spirits today, and it is SUCH a relief for us to see. She still whimpers and cries in pain quite a bit, but it's not constant like it has been since the surgery. One thing that has really helped to distract her is having visitors. She even gave us a smile today when she was with her Uncle Noah!! She keeps asking when more people can come :)
We're so glad that Ella seems to be turning a corner. The first 2 to 3 days after a surgery like this are always very hard, but once we figure out the right combination of pain meds and we're able to get some food in her tummy, things start to move in a positive direction!
We cannot thank ALL of you enough for your thoughts, kind words and prayers! It means the world to our family and it's what's keeping us moving forward! Thank you!!
