Wednesday, November 9, 2011

Seizures and Meningitis

Hi everyone,
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



  1. I feel so sad for you guys, you don't deserve this and neither does she. They will take care of the menengitis and things will start coming back to normal. One day, this will all be in the past. You'll be having fun with her, santa claus parades, halloween, parties, conventions with costumes for her... The best part is in front, she as a long and full life ahead of her and she is lucky to have you to as her parents. Things will work out for sure, have faith in her strenght and in yours. We think of you guys everyday and we send you our best. Take care

  2. Lots and lots of prayers. And as someone who's been through 3 bouts of viral meningitis, it's not fun but if it's viral I suspect the worst part of it is over.

    Strength to you.

  3. Frani, I just want to tell you to please keep being the brave parent you are.! For a mother who went through this for 10 months of my daughters life, and then seeing her go for 5 minutes when she was only 10 months old and then she came back, but then theres was the fear of five minutes being to long and there being brain damage and so many other things.I have my kids and they are healthy but they both were very ill, in those times i asked myself,why me? when my son was born and he was ill and in the hospital i asked why me again? what did i do wrong that i have to keep on suffering with this again.? asking God to make me sick instead of me seeing them ill in a bed unresponsive unable to say mommy or play or laugh. Its hard I know.. but with tears in my eyes i ask you to keep strong thats the only thing that will keep you and her going. I will pray and my children will pray for leah as well. I finally realized why me ? because I was able to handle it, i am strong and my kids are strong? and I became stronger and God has his eyes on me and my kids and so many other people praying and changing lives like they did because of my daughter. You and leah make so many parents realize that they should also love their children and show them to love others around that are not well. Many prayers.

  4. Stay Brave frani. i have no idea why god is having all of this happend. someone would say its not god's will. whatever. your pain is my pain. i ache for the both of you.. i do

  5. How I wish we could all change this for sweet Leah and for your family. Your questions and frustration are certainly understandable. You are in a pressure cooker situation and it's important to let off some of that steam. We hold you in our prayers.

  6. It must be so difficult to feel the pressures of providing for and protecting Leah, reaching out to all of Leah's followers, and wondering what the future will bring for her and your family. I wish that I could help bear some of that load for you, but since I can't I just hope you know that it's okay to feel frustration and cry and scream, and that no matter what, thousands of people are out there, thinking about you and praying for you. Every night I say a prayer for Leah, but also a prayer for you both - to give you strength and to bring your comfort. Even though we're complete strangers, I have no plans to stop trying to lift your family up. :)

  7. *BIG HUG* And lots of praying for you and your family.

  8. I believe it's your strength as a family that has chosen you. You keep many of us going.
    Forever in our thoughts & hearts.

  9. Those of us who are parents and granparents understand. Here, at our house, we'll continue to pray and help out in any way we can, with even the smallest of donations, so you'll know you're not alone. We know you're not ungrateful!

  10. Sending prayers that God's grace, love and light surround you all as we all struggle to understand and find meaning in the challenges that you have faced ... oxoxoxox

  11. cuando leía esto tambien me preguntaba porque?
    es imposible no sentir todo lo que estas pasando,
    cuando lo expresas con tanta sinceridad
    gracias por compartir :) tengo fe en que las cosas van a mejorar para ti y tu familia.
    Les deseo lo mejor

    Ana Lucia

  12. Sweetheart - I know you are exhausted, frustrated, angry, happy, thankful, and are going thru a hundred other emotions but I want to tell you a story that I pray will help you out a little. A little over 27 yrs ago I was pregnant and a month after I found out I was pregnant I was exposed to German Measles. After many many testes they told us that there was only a 5% chance that IF I didn't miscarry that she was going to be either mentally or physically handicapped OR both. They wanted me to abort. Of course I didnt; I went into labor @ 26 wks. (Reminder this was 27 years ago). They flew me in a helicopter to the closest NICU hospital (2.5 hr drive) and delivered c-section. She had problem affter problem while in the hospital and we lost her 4 times b4 she was even a month old. Then developed a hole in wall of bowel @ 1mth and etc etc etc. Finally when she was 2 mths old they moved her to a hospital closer to home and then after another mth she finally got to come home. One week after being home her heart/resperator monitor went off as usual but this time she didn't come back. I had to give her CPR all the way to hospital until dr got there bcs of stupid nurses. For the first year of Ashlee's life she was basically in hospital for one thing or another and surgeries. The drs ALWAYS said that she would never be a normal child but they also said that she was going to be born mentally/physically disabled and they were wrong about that so I kept working with her. This is just a brief of her first year! I was determined to prove the drs wrong bcs they are human too and aren't always right when they say a child isn't going to be a normal child and be up with the kids her age. Well; Ashlee is now 27 yrs old, has a beautiful little boy, and is graduating college this Saturday. She has absolutely nothing wrong with her. I just worked with her and she like Leah was a fighter. The reason I told you this story is bcs I remember feeling all these feeling and thoughts you are surelly having and want you to know that its normal. Also; as good as a Mommy & Daddy Leah has, as strong as that precious little girl is and all of the prayers that are with you three, Leah will continue to fight. One of these days you will be watching her go to school, graduating and doing all the things that little girls should be doing and you will look back on this time and take a deap breath and say; "Wow; look at everything we went thru with her and she doesn't even realize how strong she really is"! You may feel like you don't know how you are going to make it another day sometimes but just remeber, all you have to do is get thru today bcs tomorrow will be today again! I truelly hope & pray this helps you even get thru one day. You three are ALWAYS in my thoughts & prayers. I know you can't always read EVERYONES post or comment but if you get a chance to read this oneand/or ever need to just talk/vent/cry or if you guys need ANYTHING don't hesitate to let me know and my husband & I will do whatever we can to help. We live in Georgia right now but if you need anything God will help us to provide it! God bless you, your hubby and your precious Princess Leah.
    Cindy Ironmonger

  13. Mila's Parents here,

    After finding out about Mila being born with half a brain I went thru your same feelings of why my child? Why us? Those are feelings you don't ever get a answer to but find peace in yourself. Remember God gave her you because someone else wouldn't have taken such good care as you are for her now. I call Mila my gaurdian angel here with me Leah is your angel your blessed to see every day... Our thought's and prayers are with you always

  14. MILA also says LEAH get better hope to meet one day

  15. I'm glad to hear you vent. It's good you are pissed. It's great you are taking control of your feelings and letting them out. It's about the only thing you can do right now. My cousin went through this with her son. He almost died so many times. He's 27 now with 2 sons of his own. Keep hanging tough.