Wednesday, June 20, 2012

Another Journey update

I haven't posted in almost 3 weeks! A lot happened in those 3 weeks, but I'll start with Journey's health stuff.

We went to the pediatrician who agreed that she is most likely having seizures, and got referred to a neurologist. The pediatrician wanted us to postpone Journey's tonsil/adenoid surgery, but the neurologist said that she would be ok, as long as the ENT and the anesthesiologist were on board. He wanted her to get an EEG, but their technician wasn't in that day. He told us to call and schedule an appointment, but then when we called, they said that we don't call them, they call us after preapproval from the insurance. Then they never called. So we called Children's hospital to see if we could get an EEG during her hospital stay, but they didn't have any openings.

The geneticist had wanted her to get a brain MRI, but wanted to wait until we did all of the other tests first in case they could pinpoint her syndrome without having to put her under to do the MRI. When we found out that she was having surgery anyway at the same hospital, we emailed genetics right away to see if they could order the brain MRI to happen at the same time. They said they would try, but we couldn't get it scheduled because the MRI anesthesiologist wasn't in that day...even though she already had an anesthesiologist and would already be was a little frustrating that we weren't able to get any extras in. We ended up scheduling the EEG and brain MRI for different dates.

The surgery went really well, she was a trooper as usual. She had her tonsils and adenoids removed, and she also had a more in-depth hearing test than they were able to do while she was awake. At least they could double those up in one day!

The results of her hearing test weren't great-she has moderate hearing loss in the higher frequencies (I was surprised, I thought it would only be mild) and the audiologist said hearing aids would really help her, and put in a referral for speech therapy. BUT even though her hearing loss is moderate, it is just above the line for insurance to consider hearing aids a need, so we have to pay for them out of pocket. Kind of a bummer, but we want to give her every opportunity to succeed. I found a website that lets you do monthly payments, and there may be a program she qualifies for that can help pay for them too. We'll find a way :)

Both procedures took a total of 3 hours, and then she was in recovery for about a half hour before she started waking up and they came to get me. She was crying and sounded hoarse, but when the nurse offered her juice, she said "yes please!" and drank the whole thing and asked for more. The nurse was surprised that she was so willing to swallow, she said usually it's a struggle to get kids to drink right after surgery. She had some fluid in her lungs and needed a breathing treatment before leaving the recovery room, but eventually we made it up to our room.

Our nurse was awesome and super nice, making sure we had everything we needed to be comfortable, and running around checking snacks and calling the kitchen to make sure Journey would have enough dye-free snacks. Turns out Children's hospital doesn't have any ice cream, pudding, or popsicles without artificial colors-lame! Luckily my parents were coming up to visit anyway so they stopped and picked some up. The nurse also grabbed a bunch of apple juices for us to hide in our room because it was the only dye-free juice they had. We ordered soft foods for dinner, applesauce and a berry smoothie, and when the nurse came in and saw her finishing an applesauce, she also commented on how great it was that she was so eager to get back to eating so soon without any encouragement.

The night was pretty rough-the night nurses were horrible and she cried a lot of the night, mostly because I had to keep calling when it was time for more morphine, even though it was in her chart that she should be getting it every 2 hours. And then they would never come when I called. And the pulse ox alarm kept going off every time she kicked her foot, and would beep for 5 minutes before someone would turn it off without even coming in to check...I think I got an hour and a half of sleep total, but not  all at once.

The next morning we had a slightly nicer nurse (but not nearly as awesome as our first nurse!) and we made friends with our roommates and spent the day chatting. Because she was so eager to eat soft foods, the nurse said I could order her some regular foods for breakfast to see if she would eat them. She had scrambled eggs with cheese, cottage cheese, and something else that I'm forgetting-but she ate them all and they said she'd get to go home that day. A cart came around with coffee and bagels for the parents, then a guy came around with bingo cards and markers and said to turn to an in-hospital tv channel for a bingo game. Our roommate was also a baby, so his mom and I played bingo for them while they napped and we drank coffee and chatted, it was more fun than we thought it would be. When you get a bingo, you call a number from your room phone and they send someone in with a basket of prizes. Our roommate won, and then after the game someone came in to collect the cards and gave prizes to the kids who didn't win. Journey picked a little stuffed cat.

We got discharged at lunchtime and our roommate had just fallen asleep, so his mom came down to the cafeteria for lunch. They don't deliver food for the parents, just for the kids, so we were both starving. Journey scarfed down a big bowl of macaroni and cheese and ate some cookies.

We had another dye allergy related disappointment before discharge-the ENT wanted her on tylenol with codeine, but they don't make it without the dye, so she had to just get regular tylenol.

She recovered quickly and sounds great! No more loud breathing or gasping while she sleeps. The first few days I kept checking to make sure she was breathing because she is so quiet now!

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