Friday, May 20, 2005

Jenelle is home!

Jenelle was released from the hospital on Wednesday and we finally got home in the late afternoon. Jack was very happy to see his sister again, and she even managed a small smile for him as well. We have found it is better for Jack if we avoid using the "hospital" word when Jenelle is admitted. However, 8 days in the hospital was a long time to avoid the subject with Jack. He immediately asked me if her "broken brain was fixed" and I explained that Jenelle was actually sick with the tummy flu, similar to the one he had experienced a few days prior to Jenelle's admission. He was content with that answer, but has asked each night since we've been home who was actually sleeping at home that night. At bedtime on Wednesday night, we had a special treat. I was reading books to Jack, and Brett brought Jenelle in to join us. Brett was being playful with Jenelle and lifted her into the air up to the ceiling. Jenelle smiled and giggled loudly in response! She has never done this before, so Brett continued to do this getting a laugh from her each time (about 10 times in a row!) She seems very happy to be home. Jack asked me if Jenelle could sleep with him that night, so I had to explain that she was safer in her crib. It's nice to finally be home!

I wanted to wait for our trip to UCLA before updating everyone again. We saw Dr. Shields at UCLA yesterday and brought him and his team up to speed on our 8 day adventure at "Spa CHOC." Jenelle pretty much looks like a train wreck with her bruises from lab draws, and her new found "allergy" to tape and latex that we discovered sometime last week upon leaving the PICU. Would you believe it? - Jenelle had only 2 small seizures yesterday - her best in weeks! Jenelle came home with Dilantin added to her regular seizure meds, and Dr. Shields thinks we should continue on a very low dose for the next month to give things time to settle down. Jenelle has not gained a pound in 15 months, and is actually 2 pounds lighter than she was in the fall. Dr. Shields is in favor of her getting a G-tube, and felt we should get that started before putting her back on the Ketogenic Diet again. He said the Diet often can lower her immune system, but definitely was not the cause of her recent illness. So, he loaded us up with prescriptions, and plans to see Jenelle again in early July.

Many of you have asked - Jenelle's meningitis was not contagious because it was bacterial and not viral. She went back to daycare this morning with her brother, and we are to see her pediatrician this afternoon. We have an appointment with the GI doctor next Wednesday, and I imagine we'll get a surgery scheduled for the G-tube placement. She still is not eating solids and I fear she has lost some skills. Dr. Shields suggested she had been through a lot and it may take a while for her appetite to come back fully. We are hoping with time she will eat better, and realize a G-tube will help with nutrition and meds.

For those who have commented on it, yes, my sense of humor is still in tact. How could I survive without it and my sense of sarcasm! It has been a long two weeks, and I am looking forward to a relaxing weekend with the family. Thank you all for your extra prayers these past two weeks. We really appreciate it.

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