So, we're back in the PICU....
On Sunday morning Leah woke up with fast fine tremors all throughout her body, she was shaking so much, we thought maybe she was getting a bit sick. We had taken her to the ER the Thursday before for similar movements, and they did an infectious workup to see if maybe she had an infection of some sort. At the ER, they had told us that it could be that she was getting a bug and the movements were a reaction to it.
Anyway on Sunday, she needed to be on the vent all day since whenever we would take her off it for even a couple minutes, she'd desat down to 20% and turn blue on us. We had to hold her so she wouldn't shake so much, and hold the vent tubing in place so it wouldn't come off. After hours of her at home shaking uncontrollably, and several emails and phone calls with our pediatrician and the neurologist on call, we decided to take her to the ER after she spiked a fever of 101.1
At the ER, everything was very chaotic as usual. The doctors there weren't familiar with her so they were talking with the peds neurology on call doctors who had seen her on Thursday. About an hour into the ER visit, Leah's movements changed. They became more repetitive and she was not really as responsive. It looked like ticks that just kept going, and then she would go limp for a while, her eyes would cross, her legs would stiffen and suddenly she'd jump and go back to the repetitive movements. This scared us as it looks so different from what she was doing before and we told the doctors we wanted an EEG because it looked like she was having seizures. They looked at her and called the neurologists again, then an hour later told us that the neurologits had said they would stay the course and just do the work up to see if there were any signs of infection and to not do the EEG. At this point, I was really upset, it was obvious to everyone that she was seizing and I wanted to get an EEG to confirm it, so they could stop it. I asked who made the decision and they told me that the on-call doctors that they had spoken to did, and they didn't think it was necessary, since she'd had normal EEGs in the past, and she has a movement disorder. They also said that it was difficult to get an EEG tech onsite since it was the weekend. I firmly explained that I thought it was completely illogical and irresponsible to make a decision like that over the phone without even seeing her! And the whole weekend thing was ridiculous, just because it's the weekend, EEGs don't get done?! I had to say the same thing to 2 other doctors who came in, until finally another hour later, they told me that they would be doing the spot EEG (which means they would monitor her for 1-2 hours as opposed to 24 hrs). The attending doctor of the Emergency department, came in and saw her and thanks to her is that things started happening. She took one look at Leah and knew she was seizing and started ordering meds to stop the seizure. One of the doctors mentioned that an EEG was going to be done, so they should wait, and she shut them up with "I don't care about the EEG, we need to stop this!". Leah got small incremental doses of Versed, which didn't seem like they did much. About 30 minutes later, the EEG was being put on her, and as soon as the tech finished setting it up, he took one look at the monitor and said "oh, um yeah she's in status, she's definitely seizing" He then walked out quickly to get as many doctors to see the monitor and try and stop it.
She was quickly moved up to the PICU, since she was so dependent on the ventilator to breathe, and the intensive care units are the only places in the hospital where they have vents. There she was given a slew of other drugs until the seizures finally stopped with doses of Pentobarbitol.
She's now been put in a drug-induced coma to keep the seizures from happening. She got a CT scan on Monday morning which revealed that there was no swelling or bleeding. She then got a lumbar puncture again so that they could test her spinal fluid for infection. The results came back and they found a high white blood cell count in her spinal fluid which means she has an infection in her brain which was most likely causing the seizures. She has meningitis, however, we still don't know what kind, if it's bacterial or viral. We should know by the end of the week possibly. Viral meningitis is much less dangerous, and the infectious disease doctors believe that it will be viral; just because of the severity of the symptoms would be so much worse if it was bacterial. One of the scary things about bacterial meningitis is that she could lose her hearing. But, we still don't know and most people fully recover if it's viral.
For now, she's been knocked out and they have slowly taped the pentobarb off, so that we can see some brain activity but she's not completely awake. Before, when it was fully loaded, there was no brain activity.
Because of the coma, her bladder was too relaxed to function, so she was retaining a lot of fluid. They placed a foley catheter in her yesterday and she is peeing now, but she is still really really bloated. They are giving her some diuretics so that she gets rid of the extra fluid as well as albumin so that the extra fluid gets absorbed back into her bloodstream. She is still so puffy, she looks like she's been in a boxing match. I'll have to post pics later.
One of her IVs also get infiltrated, meaning the fluid going thru it, get under her skin and not in her vein, so she got a big blister that popped and is an open wound. It looks pretty bad, but I'm staying on top of them to make sure it's getting taken care of.
I can't really sleep tonight, I've just stayed up writing and doing work that I was behind on. I'm usually able to deal with things much better, but for some reason, this time I've been feeling really down. I think it's just nerve-wracking to still not know and get hit by a curveball like this. I think it was just so out of nowhere, and to see her so out of it, and bloated and in a coma is so incredibly hard. I feel angry that this is happening, why does this happen? I can deal with the fact that she has disabilities, I can deal with knowing that she will probably always be behind other kids her age; but it's the constant fear that something like this will hit that has my nerves shot. And I try to stay positive, but I just hate the situation we're in. I mean, I know that Leah has changed so many lives and brought so many people together for a cause, but why did it have to be my child? Can't the universe use some other kid as an example of what great things people can achieve? I don't want to sound ungrateful to everyone who has helped us and supported us, though. You guys keep us going, but she's so beautiful, it hurts to see her so weak. I keep waiting for this nightmare to end, but it's real, nothing will ever be the same. But, at least we still have her here with us, and I know there are so many families who can't say the same, so I consider myself lucky. And that's what gets me through this, that and seeing her fight for her life everyday.
Well, I'll keep you all posted on here as much as I can.
Good night...or good morning I guess