Friday, August 30, 2019

After the EEG

The nurses do a great job about wanting to know your child. They ask about likes and dislikes and try to provide what they can that’ll make the hospital less scary. When Hailey told the nurses that she loved dogs they asked her if they should call for a therapy dog to come visit. Hailey was so happy that a puppy was coming to see her. The therapy dog that arrived was named Ava and right away knew what Hailey needed after that crazy life flight and a 24 hour EEG study. Hailey just needed some calming puppy snuggles. At the end of her stay it seemed that even Ava was sad to have to leave. 
Therapy dogs will come and visit your child at Primary’s, it’s another amazing part of the hospital.

We will check the seizures with an EEG

Once we were all settled in after the life flight crew dropped us off, the EEG was set up and it would run for about 24 hours. It would also audio and video record Hailey during this time. If you or your child ever had an EEG done, you know that the glue/goop they use is pretty though to wash out. We had the help of a nurse tech and after the EEG was done we washed Hailey’s hair. Hailey has the hair of a little lion. It’s so thick and we must have worked on shampooing, scrubbing, and de tangling it for at least an hour, and that’s with 2 of us working on it. With as many people that have EEGs every single day you’d think they’d invent an easier to remove goo. While I was speaking to doctors after shampooing Hailey’s hair with the tech, hailey had said she wanted Anna braids in her hair. The nurse tech was so amazing that SHE braided Hailey’s hair for her! They talked about favorite animals, favorite colors and just had a sweet little spa day moment. This hospital is honestly incredible, but it also takes incredible people to be that way. Our nurse tech was amazing!

Our second flight for life trip to Salt Lake

After Hailey finally really woke up from being sedated after her seizures, the Las Vegas doctors called the Utah doctors and we went back and forth on where Hailey should be treated. Hailey had a bad night with crying, headaches, and vomiting and even though they ordered an EEG to be done the tech just never showed up, it didn’t get done and I think that’s when Utah decided to accept Hailey as a patient. We’d need help though, especially with insurance since the hospital already agreed to take Hailey. Fortunately through the  Hunter's Hope Foundation we have a health care coordinator for the LCN (Leukodystrophy Care Network) I emailed Emily and she took care of everything! In less then 6 hours we were going to have a medical transport for Hailey.
I debated back and forth for those 6 hours if I would fly with Hailey and her dad drive, or if her dad would fly. The last time I did that flight I got SO sick, then Hailey got sick, then there was vomit everywhere. Finally Hailey decided that she needed mom. So I sucked up and went with her. 🤢 then I promised her dad that if we EVER had to do this again it’s all him and I’m driving.
Emily was at the hospital and so was the tech for the EEG. Things were happening NOW! Emily asked me what I needed and she started a list. Besides having the EEG and seeing the neurologist, we will need to see Cardiology and check Hailey’s pacemaker, we needed a referral for physical medicine, a teacher/school note and recommendations, medication counseling and the list goes on. Emily put it all into place. I didn’t have to jump around to find the specialists, they were all coordinated to come to us and they were all a part of Hailey’s team. Thanks to the amazing people and parents who work to put the LCN together our stay at Primary Children’s was going to be so much less stressful. We really want to thank Emily for all her help! Tomorrow I’ll talk about the EEG and how that went.

Seizure Hospital Stay LV day 2

Thank you for all the kind, sweet comments in regards to Hailey. While these pictures are from last week know that Hailey is nearly back to her baseline as I type this. She is weak and not walking on her own with AFOs, but she’s talking and eating on her own. Walking ALWAYS takes the longest! 
While she was unconscious for nearly 24 hours there wasn’t much we could do. I stayed with Hailey while I sent her dad to go home and get some sleep and then bring back anything we needed. The Ronald McDonald House Charities of Greater Las Vegas made sure that the parents in the PICU and NICU had lunch. I want people to know that The Ronald McDonald House doesn’t just help families out of state, which I think a lot of people assume. They will help anyone in the Las Vegas Community that have a child in the hospital. 
We learned the second day that it would be better if Hailey had a medical transport to Salt Lake City where the doctors familiar with her and familiar with Leukodystrophy could take care of her. That’s were the LCN (Leukodystrophy Care Network) comes in. I’ll explain our experience with the LCN and the 2nd flight for life we’ve had to take tomorrow.

Hailey started having seizures

This will be difficult to write, but know by the end things are under control.
Last Tuesday Hailey had 3 big seizures. The paramedics were called and she was taken by ambulance to the Las Vegas Children’s hospital. The seizures were stopped by giving her a sedative. She was unconscious for almost 24 hours in the pediatric intensive care unit. The longest 24 hours of our lives. Very long story short, we had to do a flight for life to Salt Lake while her Dad drove. (More on that later) Hailey is now taking anti-seizure medication for the rest of her life. After stays in 2 hospitals in 1 week we are recovering at home now. Last night was our first night back. Even though I was exhausted I was also terrified wondering “how do I sleep and monitor Hailey at the same time?” I was told the first 3 months are what determines if the dose is correct for seizure management, even though it initially goes by weight. We’ve NEVER had to deal with seizures, but as her disease progresses new things are certain to pop up. We were doing so great for so long! We were NOT prepared for this but now we have to deal with it. Hailey is a bit weak as expected but still smiling and laughing at the silly things we do to try and move forward. We will slowly but surely get into a routine, but the last week has been extremely rough on all of us. August is just not our month, never has been. 
I’ve had the Etsy shop closed while we’re getting back on track but I will do what I can for custom orders I’ve started when I can, but Hailey always comes first.