What a Week

Tuesday morning Charlotte and I dropped Grayson at school and picked up some of our friends and drove down to Galveston for the day. We had a lovely morning sitting on the beach, chatting with friends, and watching two toddlers play in the waves. That morning now seems like a million years ago.

We were on our way back to Houston when I got a call from Grayson’s teacher that he was having a seizure. Unfortunately, this is not uncommon for him so I wasn’t too concerned. My mom was supposed to pick him up so I just told them to give him Diastat and keep him comfortable until she got there. About 20 minutes later my mom called- he was still seizing. I dropped my friend and her kids off and rushed to school. I held Grayson in my arms and he was burning up. We are told anytime Grayson has a fever to immediately bring him to the ER. Fevers are very dangerous to kids with Mito. Grayson hasn’t had a fever since just after his first birthday, so I knew this was serious.

We rushed him to the hospital and minutes after we got there they started IV fluids and took a lot of blood. Tuesday night his temperature was 103.6. He was admitted and we were told we would be here at least 48 hours waiting for the blood culture results to come back.

Wednesday, it was obvious Grayson was miserable. He wasn’t having any more seizures, but was vomiting, running fever and diarrhea. Late in the afternoon he was getting worse, not better. His Mito doctor and his immunologist came in the room, along with what seemed like a thousand other doctors. Everyone was talking, I was holding Grayson and he was screaming in pain and was burning up. It was hard for me to hear what the doctors were saying over the screaming and they were all wearing masks so I couldn’t even try and read their lips. Dr. K gave me a hug and told me very seriously they were very concerned and Grayson needed to be moved to the PICU. It was obvious the situation was urgent.

They wheeled him out of the room in his bed and we weren’t able to see him for about an hour. When we were finally able to go to the PICU, he had a new IV in his neck and bags of ice covering his body. He was still screaming and moaning. His whole body was so pale and his eyes were purple and puffy. It was AWFUL. That night, we spent hours trying to get his fever to come down. He had a probe in his bottom so they could monitor it constantly- I was obsessively checking the screen. His temp was hovering right at 104.7 for what seemed like forever. They started him on heavy antibiotics, IVIG infusions and kept putting ice on him. The scariest was when he stopped screaming when the ice went on his skin and was non-responsive. I stayed with him that night- my mom took Charlotte home to sleep and Ryan stayed in the Ronald McDonald house.

Yesterday morning, he woke up a different kid. He was still super grouchy (can  you blame him?) but his fever was gone, and he had color back in his skin. He spent the day listening to Veggie Tales, whining about being stuck in bed for 3 days, and sleeping. In the PICU, I couldn’t bring Charlotte in the room, so yesterday was kind of a juggling act having her cared for. But I have wonderful friends and family who helped us out- trading off sitting with Grayson or holding Charlotte in the waiting room. And I have to give props to Charlotte who has been a rockstar little sister- she just goes with the flow and doesn’t complain about anything unless she’s hungry. Sweet girl. Today, she is at Grayson’s school for the day. His teachers generously offered to take care of her- love them.

Grayson was moved from the PICU back to a regular room last night. Everything still looks good- all his cultures have come back negative, he has been fever free for more than 24 hours now, and is tolerating his feeds. We will most likely get to go home later today.

I spoke with Dr. K yesterday and she said this whole thing probably has more to do with his Leighs than a virus or bug. She wants us to do an MRI in a few weeks to see how much the disease has progressed in his brain. While I want to know (I always want to know), I am terrified of what it will show, and how many more of these scary days we will have to endure. At one point Wednesday I was terrified Grayson wasn’t going to survive the night. I am just so thankful we live in Houston, where our hospital KNOWS Mito and knows that a fever in a Mito kid is not like a fever in a typical kid. And now I know how FAST things can go downhill.

I pray we can go home tonight and all get some rest this weekend- we are exhausted!

15 thoughts on “What a Week

  1. Terrifying! I'm glad he seems to have turned the corner and hope you don't have any more incidents like that one … geez. Hope you have a nice quiet weekend!

  2. Oh Elizabeth, how terrifying. I was a wreck just reading about this for ten minutes. I can't imagine living it for days. You poor thing. And your poor boy. I'm so glad he's better but I'm so sorry you had to go through all that. Sending love and light. Abiding with you.

  3. What a scary situation. As I read your post, I thought about how fearful I would be that he wouldn't survive the night with a fever that high – I can't imagine living that. You are very brave. So is your little boy!I'm hoping you get good news and get to take Grayson home ASAP!

  4. Oh Elizabeth, this is so scary! That had to be awful watching your poor little guy in such misery. Glad to hear he's feeling better, and I hope you guys get to go home soon. Thinking of you and your family.

  5. What a week, indeed! You have all been in my prayers, Elizabeth! I can only imagine how scary Wednesday must have been for you guys. I'm so glad to hear your precious G-man is doing much better. Hope you are all home soon!

  6. Elizabeth – I "stumbled" upon your blog several months ago – and have followed it ever since. Your journey is an amazing one. I so admire you and the way you handle things. A dear friend of ours has a little girl who is 7 months old. The baby has been the picture of health – until a month ago when she was diagnosed with something called "smooth brain syndrome). I am going to attach a link to a blog she has started that tells about the symptoms, diagnosis, treatment, etc. I know your plate is full – but I was hoping you could help me out. This baby is going to have to have care in the home – and I remembered reading about your nurse. I was hoping maybe she could do something similar. Do you mind letting me know a little bit about the process for that benefit? Any tips you could give would be appreciated.http://journeywithmadeline.tumblr.comThanks – Fran GatewoodJackson, MS601-214-3765

  7. Oh my very hard to see it recapped, oh my what a week. I am so thankful he is better and you are home, that was scary all around with the fever. Poor sweet boy, hope you all have a restful weekend at home. Xoxo

  8. Oh man Elizabeth, I'm sorry I didn't realize when you emailed me earlier this week just how scary of a situation it was. I pray that he is doing better by now and that you will be out of the hospital soon and back home together as a family. ((HUGS))

  9. I was just thinking about you yesterday, hoping that nothing serious was going on… when you hadn't posted in a few days I got a bit nervous. First, thank God he is ok!!! I can't even imagine how terrifying that was for you and for him. I am so glad that your doctors are amazing & proactive. Please keep us updated and let us know when you're all home and safe.

  10. Oh my gosh! I hope he's doing better today and that you all are at home resting. That boy sure is good at scaring everyone!!! I only know from when Graham had a fever at 4 days old how scary that was, so I can't imagine how this experience was for you. And then with another child to care for, it gets really difficult. You all are in my prayers…

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