I want to say thank you but I don’t have the words to express the gratitude for the love and support our little family has felt the past four days. I am overwhelmed by your love and concern for Grayson. We have had people call, email, text, visit, pray, bring food, take care of our dogs, and leave comments on this blog and facebook.
Thank you, thank you, thank you.
Grayson is doing much better. He’s had a rough few days- fever, diarrhea, and not wanting to eat. At our visit to his pediatrician on Friday, Dr. D suspected he may have strep but the test was negative. She put him on antibiotics just in case, but we are having a hard time getting Grayson to keep the medicine down- he gags and then throws it up (along with anything else that’s in his stomach). He hasn’t had fever in over 12 hours now, so I’m hoping he is on the mend.
I also talked to Dr. D about protocol if G were to have another seizure. When the paramedics arrived at my house, I asked them to take us to Texas Children’s (west campus) but they wouldn’t. They said TCH was “full” (whatever that means) and they were only to take kids there who had pre-existing conditions. I tried to tell them G has neurological issues and wouldn’t that qualify? Guess not. So we ended up at Herrmann, which was fine- this time. Dr. D said unfortunately, if you call an ambulance, you really don’t have control on what hospital you go to. But if it happens again and I feel comfortable driving him myself, then of course I can go to the ER at TCH. I would hope if this happens again, I will be able to not be so freaked out (I literally thought my baby was dying) and would be able to get him in the car and drive him to the hospital safely.
I am really hoping his seizure was due to fever and not part of his neurological issues- this is his first real fever and real illness, and maybe it just shocked his little system. And I wonder if there’s any way to really know for sure- maybe not. I had a message yesterday from the neurologist’s office- apparently they called Friday, but my stupid phone never rang and the voicemail didn’t pop up until yesterday- grr. Anyway, he wants to see Grayson in the office and is going to order another EEG. I am wondering if this time it will be a 12 or 24 hour one. I plan on calling first thing tomorrow and hopefully they can see him this week.
Right now my little guy is sleeping peacefully- since Thursday night I’ve been checking the video monitor obsessively again- like I did when he was a newborn- to make sure he’s breathing normally. Thank you again for everything – our family loves you!