You know when things are just going more then fantastic and you just never have the thought of when the one terrible thing will happen?
Things have been great! I returned to work, the kids have been doing fantastic, they have been sick yes but we're all on the mend!
Now that I start thinking about it I see a few signs. The babysitter said one day Michelle seemed off to her. I mentioned to Shawn to just keep an eye on her and let me know what's up. She started being "normal" again. Then there was the tiring while walking. Walking is still so new for her I didn't even think it could be a sign. Then she was stumbling while crawling. Again it could just be because she was super active that day.. I shrugged it all off.
Monday...
Phone call from the school, Michelle was complaint of headache but seemed fine. So I said ok! Lets give her some water and call me back if she worsens. I was busy trying to get over a horrible cold that Abigail had given me. 30 minutes later changed I to the grabbing of a sweatshirt making a quick decision to not change the children's clothes and out the door in pjs we all went to get Michelle. This phone call was, she threw up, twice, seized on the way to the office and then again while waiting for me. I was busy arguing with the nurse to let me assess her first before calling ems. I get there and she's completely unconscious, barely responsive but is able to communicate.
I took her home. You know sometimes a seizure is just a seizure and its not really big business... Unless they continue. In the 20 minutes she was with me we had 3 more. A swift call for emergency services sent the fire department blaring sirens through our neighborhood. Michelle got a first class ticket to Rady Children's Hospital in San Diego.
Between fighting a head cold and trying to decipher what was actually being asked and what was being told in the emergency department is still a bit of a blur. A stat ct scan was ordered along with the normal labs and X-rays. Scan looked normal.... X-rays were fine. The only thing, her sodium was low by 4 points.
We got a first class ticket to PICU for seizure watch and shunt watch. First if all the PICU staff here is amazing. We've only been through PICU at balboa for all of an hour so this is a new trip for us. In Michelle's view its yay new friends!
Monday night was ok. Monday morning brought on whining, screaming, fits upon fits. We tried hypertonic saline to increase the sodium and hopefully rehydrate her brain a little, decadron to help any swelling that may be going on, keppra for the seizures and diamox for something I can't remember. After discovering a severe allergy to the diamox it was quickly discontinued. They noted no improvement with the exception of the seizures due to the keppra. Off to ct we went and then quickly to the or.
What came next honestly my gut already knew. Her shunt was blocked. Being cautiously optimistic I took this as a possible solution. Michelle woke after having minimal airway issues and quickly started eating and drinking. We managed to get discharged to the step down PICU here. Then things just went very quickly downhill.
Michelle quit responding. She started seizing. She started vomiting. Her vitals started falling quickly. The neurologist and neurosurgeons quickly noticed her right eye was deviating to the right, that got her a rush to the ct scan and angry doctors yelling at hospital personnel to MOVE!
Very quickly ct was over and we were rushed back to PICU. Neurologists wanted her hooked up to an EEG ASAP. Neurosurgeons were arguing thinking this was a seizure even though she wasn't having any clear signs of it. Finally they all just agreed to give her a second loading dose of keppra and send her back to the or.
With the shunt blocked yet again surgery was unavoidable. Although they were unsure this was even the problem at this point. They just went in to look. It was almost about 2 hours until we got the word that surgery was over. While speaking with Dr. Meltzer he informed us that with Michelle having slit ventrical syndrome she was becoming a candidate for an operation to expand her skull. In a slightly barbaric kind of way he said "we will break her skull and give her brain room to move and hope everything expands out and this could stop". In a not so kind way I sort of yelled "you would do what?!" Husband doesn't think that sounds barbaric but I do. After literally breaking down for about the 4th time we went on back to PICU to wait.. And wait... And wait..
Finally! Michelle came back up to he room. Extubated, awake, using words, thirsty and hungry! She was given a little morphine and that has been her night so far! She's eating (everything she can including my salad. She loves salad.). She's drinking so much they have turned her fluids down 3 times. We've had to change her sheets now twice. Thankfully they got us a normal bed so were co-sleeping at the moment (hopefully those chux pads do their job!) and she's sleeping off another dose of morphine.
I don't see us leaving tomorrow as we had hoped. Neurosurgery kind of stomped that one down but I'm hoping for Friday at least! She's different tonight versus last night. I can't put my finger on it but there's definitely something. I'm cautiously optimistic that this is almost over and we will be home soon.
And seriously, hug a nurse... They put up with way too much.
Thanks Google...
10 years ago
Posts
