Monday, March 16, 2009

quick update

I went to the rounds this morning--which is when all the NICU doctors meet to discuss each patient and decide the game plan for them. I was able to attend while they discussed Simon. I have to take a moment to thank my mom, dad, Ben and Johannah for teaching me everything they know about Simon's genetic condition. The doctors were very impressed that we had such a grasp on the situation, and how it runs its course. They did decide, however, to monitor him an additional 24 hours, due to the 2:10am seizure to make sure that his current dosage of phenol barb (moved from 15-17 on the 15th) is a good enough dose to control the seizing. They also decided, that since this seizue did not affect his vital signs, that we would not need to have the home care come set up a monitor for him at our house. YEAY!!! He can be monitor free when he comes home.
Simon was awake quite a bit today!! He was up from about 10-12pm while I was with him, and it was so fun to talk to him, and watch him absorb his surroundings.
Chris came and got me, and we headed over to Sandi's to see Ava. She was in the tub, and Sandi had her laptop on the bathroom counter, approving fundings, and watching Ava from the mirror. YEAY for multi-tasking. Ava was pretty excited to see us. Chris made me lunch, and then headed off to study. Sandi insisted that I take some time to rest, as I had not slept much at all. I passed out on the couch after pumping 8 ounces, and woke up to Joseph and the Amazing Technicolor Dream Coat. Ava was playing barbies, and brought some over to me. She loves to play barbies man! Chris came back about 3 and we went outside to play. I took some pictures of them playing ball. I'm more of an observer these days, as my energy level has not returned. Dang, just watching Ava play and run exhausts me. Will I really get to the point that I can participate again? We went home about 5pm, and Mary brought dinner over at 6:30. I'm pretty sure to told the Shwann man to buzz off for me, and if so...THANK YOU! The dinner was sooooooo yummy. rolls, brocolli chicken and rice casserole. It even was a winner with Ava. Thank you so much~!!
I locked Chris's keys in his trunk....GO ME! Fortunately, his window was open just enough to get a plastic hanger in, and we were able to unlock the driver's door and pop the trunk with the button under the dash. We really need to make extras and stash them with neighbors. I have too great of a history of locking my keys in the car to not have done this already. We came back to the hospital about 8. Sandi and Dave had been here visiting little man, and said he was awake and ready to eat. He ate all of 5 minutes--I guess he had just eaten an hour ago--and really just wanted to be sure I hadn't abandoned him all together. I've never gone 8 hours away from him before. It was really hard! (I pumped 16 ounces between 12pm-8pm!) We stayed in with him until he fell asleep and then headed back to the room they have me borded in so Chris could do some homework. He just got an email responce from his EET professor that he can have an extension on the assignments and tests due this week--horray! Chris has been burning the candle at every angle, and it's wonderful that they are going to help him succeed and are willing to see that his family is a greater priority than an assignment. So, thanks to that professor. He is still hoping to hear from his CALC professor to see if he will allow some additional deadline time as well. Many great blessings!
Well, tonight's game plan is that I go home with Chris and Ava--help him to get her to bed while the hour is still PM (as she's been pushing 1-1:30am bed times since I've been in the hospital) and then fill my tire on the saturn and drive back here. The rounds for Simon should be first tomorrow, as they moved him to pod 1 in the NICU and they get first dibs at rounds. I'm hoping that if I'm there, that I can go first, and then can get back to Ava in time for Chris to get to work...still trying to figure out how that's going to work. nerve wracking. We'll figure it out. Ok well off to get Aves. I repacked Simon's diaper bag in hopes that he will be released tomorrow--but the Lord knows best, and will guide the doctors to what will be best for our little man. I am striving to keep that attitude. We have been so fortunate through this ordeal.

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