Finally, Jenelle is out of PICU! It has been a very long week with lots of ups and downs – here are the details. Last Tuesday morning, just after arriving at work, Jenelle’s school called to report that Jenelle had vomited. I was immediately concerned because on the Ketogenic Diet, a meal is like medication, and Jenelle had just received her seizure meds in the morning meal. Grandma Curran picked her up from school, and I met them at Grandmas,where I gave her Diastat (her emergency seizure med) to help her cope without her morning meds. I then took Jenelle home where she napped for 3 hours. After that nap she woke with a fever of 102. I had been on the phone with our Pediatrician and UCLA, and knew we may end up in emergency (we were trying our hardest to avoid it.) I spoke again to UCLA around 4:00, when Jenelle started having another lengthy seizure. UCLA instructed me to go to the ER.
At the ER, they ran the usual blood and urine tests, which strangely enough were normal. However, around 7:30, Jenelle started having many long seizures one after the other, and in front of the ER doctor. We went from thinking we had a slim chance of going home that night to being admitted straight to the PICU. When they transported her to PICU, she had blow by oxygen through her nose, and a crash cart in the bed - just as a “precaution.” That was a scary first for us, and to be quite honest, it was the first time I have ever thought that we may lose her.
The PICU is not a pleasant place, although the nurses and doctors are simply amazing. The resident doctor had been in touch with UCLA, and had instructions on how to keep Jenelle going on the Ketogenic Diet with replacement meals and glucose free IV fluids. All was going well that night, and on Wednesday, Jenelle became really lethargic and non-responsive. After an EEG, we knew we were staying another night in PICU. Thursday morning, things looked great and Jenelle was slightly more alert and holding down some Keto formula and water. She already had a “NG” tube placed through her nose to administer her meds, and we assume the tummy virus and missed meds threw her seizures out of control. Again, we were told that we were heading out of the PICU, until Jenelle started vomiting again. At this point, I consulted with UCLA, and we decided to discontinue the diet until she could get better. We have an appointment with Dr. Shields this coming Thursday, so we will discuss everything that has happened this week and about when we can start the diet again. Because she has already been on it, we will not need to hospitalize her again to start.
So, Friday comes around, and Jenelle is again holding down water and J-ello, and again we get the word that we are heading out of PICU. Just as we found a bed around 5:30 that evening, Jenelle had a seizure lasting almost 6 minutes, followed by many more long ones. So, we are staying in the PICU for another night! Friday was a difficult day as one of the other patients in the PICU passed away. It was an incredibly sad experience to witness, and my heart and prayers go out to the family.
Today was a new day, and instead of vomiting and/or long seizures, Jenelle was more alert, but also “gassy” and uncomfortable to the point of tears. Poor kid can’t get a break! She was able to hold down some milk today and was finally released to the “Neuro” ward on the 5th floor around 6:30. Our goals for tomorrow are to get her off the IV fluids, and onto some solids. If she can manage the solids and maintain her usual seizure baseline, we “may” get to come home tomorrow. Realistically though, it is looking like Monday.
Thank you again for the continued prayers. Please pray that she can start holding down some solid food so we can go home! I’ll keep you posted!
P.S. - Thanks to many of you who have sended responses to my updates. With the slow dial up at the hospital, I have been limited on responding, but please know that they all mean so very much and help keep me going! And thanks to all of you who haven't responded but I know are thinking of us too! We feel your love and support and it means so very much!