Still in pain, but doing better......

Hello everyone,

Just wanted to write and let you know how Jenna is doing. Yesterday she did ok. She is still having pain, and is on Dilaudid through her epidural. She was on a Morphine drip, but that has since come off. The pain team preferred that they increase her epidural rate and stop the Morphine. They did this today and Jenna has since tolerated it. Yesterday was mostly just a day of rest. They started her feeds back at 5ml per hour, and now she is up to 15 and will be at 20 by the morning. She did well most of the day yesterday until around 5pm and her oxygen saturations begin to go down and dipped as low as the 50's. She was not doing anything out of the ordinary, just sleeping. Her heartrate was up and had been off and on since surgery. They suctioned her and it improved, but then went back down again in the 70's. They gave her extra oxygen and eventually she came up fine. She got a little extra Morphine in case it was pain related. The doctors decided to wait and see if she did it again, which she did later in the evening around 10p. So, she basically did the same thing as before, so they decided to give her blood. They had checked her blood levels and they were a little low, and they felt that it was possible that this was the cause for her heartrate to go up and oxygen to drop (because there is not enough blood to carry oxygen cells, so the body compensates by increasing the heartrate to make more blood). They noticed a significant change in the middle of getting blood, her heartrate went down to 130's-better than 170s. So they were pleased. In the middle of the night she developed a fever of 100.2 but it quickly went away, no reason of why it happened and it has not come back. Today they have managed to lower her ventilator rate down to 12 and hope to be at 10 by the morning. It depends on how Jenna does tonight. She mostly rested today, just trying to recover from surgery. They are hoping to take her epidural out tomorrow and her foley catheter (catches her urine) and switch her pain medicine over to an oral form. So, we will see. Last night I noticed that her left eye looked different, and mentioned to the nurse, which she noticed too, but it did not worsen and then got better. Today however, when I came in the nurse said that her left pupil was clearly smaller than her right and she mentioned it to the doctors and they decided to just watch it since she was acting normal otherwise, same ol' Jenna. Throughout the day the pupil is smaller and then goes back to normal and then different again. I have mainly noticed that her eyelid droops and is more closed than her right one. As she gets tired, it gets worse. So, this evening we spoke with the fellow and attending doctors and they seem to think that it is possible it may be epidural related. Some kids have a side effect with the epidural where the medicine goes in, but can possibly go up in the spine area and hinder the optic nerve (controls the eyelid and pupil movement). The attending doctor said that this is the only idea she can think of that is different to cause the eye to do this, she had no pre problems before surgery and the epidural, it is not on the surgery side (like a nerve might be hit in surgery). So she said that once the epidural comes out tomorrow, then they will see if it improves and then determine the next step. She said because she is acting herself and showing no other neurological issues, then she does not want to rush her off to have a test done if it is not necessary. The doctor has made the new doc coming on tomorrow aware of the situation and they are going to keep a close eye on the situation, no pun intended. She said that they want to make sure that her pain is controlled and then determine the eye issue. They do not feel that there is any permanent damage that could occur, so no worries right now. We changed her site dressing from surgery tonight, which Jenna did not like AT ALL. She was very upset and is now sleeping because she wore herself out so much. The area looked good, incision is at least 2 inches long and moon shaped on her side. So, just healing now. So, the doc said maybe by Tuesday if her labs look good and she is tolerating it, then her ventilator rate be off. We will see, no rush. She is still on TPN and lipids since she is not getting much food right now. They started her back on her bowel regiman today to make sure that she is going to the bathroom, nothing yet. You should see how excited they get around here when you poop! It is crazy!

So, mommy and daddy were able to watch Amazing Race this evening, Jenna actually let us watch an adult show for two whole hours!! We played with her at the same time, so she did well. Today family went home, :( Meme and Pawpaw, Aunt Missy and Nonny. It was nice to see everyone and it was good support for surgery. We will see everyone again real soon. So, hopefully tomorrow will continue to be calm. Hopefully she will start to wake up some, but we just want her to get better. We will keep you posted on her status and thank everyone for all of the support and prayers.

Love, Jenny, Justin and Jenna