If only you could tell us what is wrong.

Oh Jen, I think this is the hardest part for us. Something is wrong, she is hurting and can't tell us what is hurting her. It started yesterday, a call from school, she has a low grade fever and keeps crying out in pain, big tears, then settles, then starts up again. I picked her up from school again, and couldn't figure out what was wrong. We brought her to the pediatrician, who did a thorough exam on her. He couldn't find anything wrong either. Said to watch her for another day and if not better to bring her to Boston. Today she stayed home, no fever and seems o.k.. She is not crying out in pain. What was it? we will never know, but hopefully whatever it was will not show up again....... If only she could tell us what is wrong. It is so hard to watch her cry and not be able to pinpoint the problem. At least she seems better tonight.

Jen likes ride from Mom instead of the bus

Well last night at 5:25 the school called saying Jen is having more seizures and they are not comfortable putting her on the bus in 5 minutes. She has a 50 minute bus ride and I agreed it wasn't a good mix to let her ride the bus. Ned and I met off the highway on his way home from work and detoured to Jen's school to get her. She had an o.k. night, and went to school this morning. She seemed fine, well by early afternoon, I received another call, more intense seizures one after another. I called the doctor, was on both cell and home phones with them both. If she had more the doctor said break the cycle with the medication. She asked if she was sick at all, "no" I answered. It was decided I was to pick her up from school again and not risk the bus ride. Well, after speaking to the school again, Jen has a fever, not high, but a fever. I made the trip and picked her up, and of course she only has her stroller for the weekend. Another story for another day.
I heard back from the GI doctor today. He wants Jen to be seen by a surgeon before scheduling her g-tube surgery, as she has had one in the past and it might just be more complicated than ususal. Of course, isn't that Jen's life? complicated?

No answer from Doctor brought us to a decision

Well, we went to see Endocrinology as recommended by Neurology and Gastroenterology. The question? Why is Jen not maintaining weight? No answers to be found, again.
So that brings us to a heart wrenching decision - a feeding tube. You see, Jen had a feeding tube in 1999, when she had her surgery. With the surgery, they said she needed one, as she wouldn't be able to completely eat by mouth. Jen proved them all wrong, and a year later, after not using it, they removed it, with letting us know that one day she will need it again. We were o.k. with that, as believing removing it gave her more freedom, and less chance of infections with a foreign object in her body. She had been doing great, eating everything and anything we gave her, her love of food is her biggest passion. So we were able to give her 8 1/2 years without a tube. What an accomplishment! I should be happy it has been so long. Well, I am so sad about this, its all I am thinking about this week, can't get it off my mind. Somehow this just feels like a kick in the head to me. When I think logically, I know she needs it, but it also me makes me feel like I failed her. I know I haven't. I have searched for answers, goodness knows we have been to all the specialists possible, but poor Jen. She will still be able to eat all she wants, she has not lost that ability, thank goodness. It will be just for supplementing her needs.
So the next call is to the GI, to update him about this last appointment, and my discussion with the nutritionist, and I guess schedule a date. ughhh.....

Reality

After talking to another mom online, I decided to add up Jen's seizures. I see the totals each day on the calendar, but never added them up monthly all together. Well, I just went back only 3 months, Jen has had approximately 152 seizures since Nov. 1.. Granted November was a horrible month for her, BUT 152 SEIZURES is just not acceptable. I don't need to look back any further. We see Neurology in 3 weeks, we need to change something....again...but what???

Another trip to the Emergency Room

On January 23rd, Jen had another awful day of seizures. They started on the bus, which is always a scare for me, continued through the morning, but were always outside the criteria for use of the Diastat at school. While I was on the phone with her school at 3:30, she began having more. They were able to break the cycle with the Diastat, but of course the EMT's were called and I met her in the ER once again. Poor Jen, I always wonder what goes through her mind during the seizures, but also with all the medical help, the ambulance ride, the ER doctors. All I can say is thank goodness her school staff is so reliable and the most caring people I know. Someone always goes with her and stays at least until I arrive. I always find someone to travel with me so she will be safe on the way home in the car, but this takes time, and seems like forever just to get to her to give her a hug.. I can't be with her all the time, but when I hear she is being sent to the hospital, I get this sinking feeling, praying she will be o.k. when I arrive. How many seizures can this child take? Once again, we arrived, took her home, and its like it never happened. Thank goodness

She was fine when she left for school

Jen is on her way home from school, early - they called at 2:30 saying she is so upset and fussing and has a lowgrade fever and needs to come home. (usually stays for the after school program til 5:30) The school suggested I call the bus co. to see if they could pick her up early. The bus company said yes and are on their way. I told them I could go but won't have her wheelchair for the long weekend. They had no problem going early, I don't like to ask for things like that. It is not a big deal to them evidently, but I feel funny asking.
For Jen's sake I hope the Motrin helps and it is a quick illness. She doesn't need any fevers, colds or anything that is going to keep her from eating and drinking. The school nurse said she had a couple seizures today too, ugh... poor Jen. To think we were on the fence of whether to send her or not today due to extremely low temperatures outside. I guess I should have listened to our instincts and kept her home. But I never thought she was the least bit sick or I never would have sent her. Well at least it is a long weekend and she can rest and hopefully feel better soon.