Well, it’s over. It’s been a long, hard two days but we are making it. Whoever said being a mom is like wearing your heart on the outside of your body was right on. My little boy is so brave and is such a fighter, and he doesn’t deserve one second of the pain he is in right now. It’s heartbreaking.
Yesterday, we got to the hospital at 8:30 and saw about 3 nurses right away to do pre-op paperwork and get Grayson’s vitals taken. I was thinking, great, we’re running ahead of schedule and we are going to get this thing over with. Ha! We were taken to a holding room, where we changed Grayson into this ridiculous outfit that was about 10 sizes too big, and waited. And waited, and waited some more. The nurses suggested we let G watch TV. Mmm, he has zero interest in TV (for the record, I am not opposed to him watching TV at all. If he did, it would sure make my life easier!). Then they suggested we let him play on the riding cars. Mmmm, he can’t sit up and letting him chew on the handles lasted about 45 seconds. So we did a lot of rocking, singing and making silly faces while we waited. For 2 1/2 hours. Bleh. And I was STARVING (and food was not allowed in the waiting room or holding area) and Grayson was starving, since he hadn’t had any food since 11 pm the night before.
Turns out, the reason for the delay was there was equipment malfunction in our surgeon’s previous operation. Finally, we met with the anesthesiologist and the surgeon, and they whisked G away. I left to get some food, and while I was gone, one of the doctors came out and let Ryan know the button was in and that part went perfectly. Then later the surgeon herself came out to let me know the biopsy was done, went fine, and the ABR (hearing test) was still going on. She had pictures of G’s stomach and the button, which was both creepy and cool.
When the ABR was complete, the audiologist came out to talk to us. There’s good and bad news. The good news is Grayson’s hearing is within normal range for high frequency sounds (hard sounds, consonants). The bad news is for the low frequency sounds, he has moderate to severe hearing loss. She wants us to check in our pediatrician to make sure there isn’t fluid on his ears and repeat the test in 3-6 months. This news really doesn’t surprise me, considering his speech delay and my observations of his reactions to sounds. Also, unfortunately, hearing impairment is yet another symptom of Mitochondrial disease. She said right now, Grayson isn’t a candidate for hearing aids because of the high-frequency normal hearing.
Recovery. Grayson is not a fan of being told to wake up, especially out of anesthesia. He slept, and slept, and then slept some more. After a few hours of him snoozing away, we got kicked out of the regular recovery ward and were moved to a corner to wait some more. Thankfully, our corner of the PACU universe had rocking chairs and a TV, and we pulled out our cell phones even though it was against the rules. He finally (sort of) woke up and he was pissed. And hot. As in almost 104 degree fever hot. The last time he had a fever that high, he had a seizure. And like me, normally his temperature runs pretty low. So everyone was pretty concerned. The nurses gave him Tylenol and wiped him down with cool water, which did not help his attitude about the whole thing one bit. The sweet nurse told Ryan and I to go get something to eat, and when we came back, his fever had gone down to 100.3 and they said we could go home. Finally.
Today has been rough. It is horrible to watch your child in pain and not be able to make it better. I’ve wanted so much to just hold him and comfort him, but he is far more comfortable in his swing than in my arms. Thankfully, his pain medication knocked him out almost all day. But when he wasn’t sleeping he was crying. He perked up around lunchtime, but then after sleeping on my chest for an hour, woke up with another fever. He cried and cried through his bath and has been sleeping in his crib since 6:30.
I am grateful that the muscle biopsy site doesn’t look nearly as bad as I thought it would, and the button is functioning perfectly. I just hope tomorrow is a better day and I get my Grayson back. I didn’t get one single smile today. I want this little guy back: