Jenelle's Journey

Jenelle was released from the hospital today at around 5:00 p.m. Brett and I now know how to give shots, and we each gave Jenelle a shot before she was released. She didn't cry for either of us, and hasn't cried for a shot since! Jenelle will be getting her ACTH in "gel" form through "intra-musclular" injection twice a day at home. The needle is an inch and a half long! If all goes well and she doesn't have serious side effects, her next hospital stay will be in two weeks for another Video EEG. She has only had 4 injections so far, but seems relatively unphased. She has been a little sleepier than usual, but that is all we've noticed so far. We also have to check her urine for protien and sugar, her stool for blood, and her temperature once a day while at home. We were given little "testing" devices for all of this, and instructions on how to do each as well (the urine and stool that is). We also need to check her blood pressure twice a week, and we purchased a stethoscope and infant blood pressure meter thingy (not sure what its actually called or whether I can pronounce it) A home health care nurse is going to visit us the next two days, then once a week to make sure all is well. Jenelle also needs to see our Peditrician once a week and the Neurologist every two weeks so they can monitor her progress. Needless to say, she is being well monitored, and we hope things remain the same (knock on wood.)

She is still having seizures, and some seem to be bigger than usual, but the same thing happened when we started Phenobarbitol, so we hope it is a trend. Ironically, Jenelle's only day with very few seizures was the day after the B6 treatment, and before we started the ACTH. The nurses at CHOC were absolutely wonderful. We had the same day nurse for 3 days, and she paraded Jenelle around the nurses station before we left. We hope to see her again in 2 weeks.

Big brother Jack is doing well and seems very happy to have Mommy home (I stayed at the hospital overnight the entire week.) He seems a little confused because things are obviously different, but is really holding up well. He has moments when he reminds us that he is 2 (ie: tantrums) but as long as we keep him active and playing, he seems to be at his best. Brett's parents brought him to the hospital on Tuesday and he cried at first and immediately wanted to go home. When he realized Jenelle was in the crib, he wanted to touch her, and eventually threw his sippy cup onto her head to wake her up! We thought it was important for him to see Jenelle in the hospital, so he could realize where she and Mommy have been. Overally, he's scared and confused, but glad things are somewhat normal with Mommy and Jenelle at home. He's picked up on my "pet name" for Jenelle and calls her his "Baby Girl!"

So now, we are at home and keeping things clean and sterile. We've made Jenelle's room at the "sterile zone" and plan to keep her in there as much as possible, or in her pack n play outside in the living room. She will be out of daycare for 6 weeks, and hopefully not back in the hospital too soon. Brett and I are holding up well. We have our moments - its not easy to see your child be poked and proded while they are screaming! These next few weeks will be difficult, but we'll get through it, and hopefully our little girl will be a new person!