This time last year, C had been in the hospital for a few days to receive a NG tube. Then he went back two weeks later for surgical G-tube placement.
This whole August hospitalization thing is getting a little ridiculous! Last night, C’s limbs and back were spasming in his sleep. I was scared. Things continue to get worse in relation to his seizure activity/potential seizure activity and watching his back arch and his arm spasm into the air was a little more than I felt comfortable with. We headed to the ER, they consulted with his pediatric neurologist, and we were admitted within an hour.
No EEG machines were available last night, so we took that opportunity to catch some sleep. Well, as much sleep as you can get in a hospital while your toddler is twitching next to you…
We are being allowed to tube feed C with the Real Food Blends that we brought to the hospital. I am so relieved that we don’t need to put him back on formula while we are here! The dietitian thought these Real Food Blends were so cool that she had to photocopy a bag to look into it further and tell others about it! I love spreading the word about real food for tubies, considering how much C thrives on a blended diet.
I couldn’t be more grateful for Child Life. How cool is it that there is a department dedicated to making children’s hospital stays as enjoyable as possible? C was able to play with train tracks while we waited for an EEG machine, then was distracted by a patient, wonderful Child Life specialist while an EEG technician attached the leads to his head. It was not a pleasant experience, but it could have been so much worse.
Today has been all about distraction. My mom brought Baby Jo over to play with C. He was so happy to see her! Ever the opposite of her brother, she immediately snagged his leftover pizza – a slice in each hand! We also had a visit from some of our dearest friends. They brought us coffee and, most importantly, made us laugh. C has done well keeping himself occupied with toys, books and the iPad.
We caught one stare on the EEG. The nurse happened to be in here to witness it, too. I anticipate that tonight will capture quite a bit of activity. Only time will tell! I am so thankful for our wonderful support system. Thank you for all your thoughts, prayers, love and light. Raising a special needs child certainly takes a village and we couldn’t be more grateful for ours.