Friday, May 13, 2005

Bad day - need to talk it out...

This is not one of my usual "Jenelle" email updates... I just need to talk I guess. One of our neighbors in the PICU died this afternoon. You cannot imagine the horrible sense of sadness there is around here with the day shift. Then the night shift came on and it is now just another day.

I saw something I never imagined. The whole time, I was wondering how they were going to remove the body. Then I saw two "transport" team members pulling a tiny red wagon, with a child size doll with a happy face on top of what looked like bundles of blankets or pillows. It was just like the wagon we used a year ago to pull Jenelle around outside the hospital grounds. About 10 minutes later, the wagon returned and the transport person put the "doll" back into the back room, and removed what appeared to be bedsheets. I guess that is how it should be done in a children's hospital.

I know the child was a boy, but I'm not sure what his problems were. I think he was on a vent. The doctors were less quiet when discussing the death with the priest that came for the family, but the PICU is so loud anyway, I didn't hear it all. Then the mother had to walk past other beds like ours in order to leave, seeing other children, and only holding her child's blanket. I had Jenelle in my arms as she passed, and I swear she gave me an angry look. Who could blame her, my child is alive in my arms, while hers was carted away in a red wagon.

We're still here in the PICU. We were actually waiting to be transferred to a room upstairs when Jenelle decided to have a 6 minute seizure. She's had more since, so we aren't moving tonight. I'm really ready to go home - with Jenelle! Tuesday was the first time I ever really thought we might lose her now. I realize she may not live long and I've accepted that, but I'm not ready to lose her yet. Other than the seizures, she has had a great day. Please pray we go home soon. I can't take much more of this place.


Anonymous said...

I came across your daughter's site searching about g-tubes.My daughter is getting hers in 5 days.She has Mitochondrial disease.This is why I am writing.Your daughters multisystem problems G.I. ,epilepsy.metabolic acidosis(unknown metabolic disorder?) hypotonia ,etc lends to this suspicion & /or possiblity .You may want to check out On information about this disease.Has someone genetic/metabolism worked her up for metabolic disorders ?Children with "Mito" can have secondary metabolic abnormalities .they do need attention as many need special dietary interventions to control.I felt compelled to write as you are searching for answers for your beautiful daughter & I only got confirmative diagnosis after a long search & many doctors ,in the end of my dd 4 th year.There is no cure currently but there are different treatment modalities being tried.But those versed in mito(there are only few) can shed light & may possibly head you toward a more definitive diagnosis.I was looking for a place to e-mail privately.I hope you do not mind this,I just felt this could be a possiblility.
take care & best wishes fron a well meaning Mommy

Anonymous said...

Thank you for your comment about Mito. I wish you luck and success with your daughter's g-tube, its worked miracles for Jenelle.

Yes, Jenelle has been tested for Mito disease, and it has been ruled out. We tested the Mitochondria in her bloodwork which was negative, and her Neuro does not see a reason to do a muscle biopsy.

Thanks again, best wishes to you and yours!