September 19: Day +79

Heaveno!

Overall, it was a good day for Bella. Don't know if I could say the same about this evening... we'll see what the rest of the night brings. Bella needed to be run +10 mL an hour on Prisma all night and morning to get her blood pressure back out of the toilet overnight. Also, this morning, the docs got rid of the ketamine altogether.

Unfortunately, it didn't do much good. When I left this evening, her BP was 40's over 20's again, AND she was shaking like a leaf on a tree. It was a terrible state to leave her in, but I literally could not stop yawning, so I came home to get some much needed rest.

It is really hard coming back to RMH to go to bed some nights. I just want to stay in her room with her, but my presence doesn't keep her BP up, and I HAVE to keep myself healthy. The fastest way for me to get sick? Skip sleep. Still, knowing that doesn't make being over here at RMH any easier.

Tomorrow is going to be one busy day for the little girl. We are getting to change her dressings on her trach for the first time since surgery on Thursday, also changing out her prisma circuit, and possibly an MRI.

In other news, we went on a downtown adventure today! It began with figuring out how to take the bus... not an easy task for a southern Californian, let me tell you! LOL. We started out going to the Twins game. They built a gorgeous new ballpark, and this is the end of the first season in it. We had to get tickets on stubhub (online ticket reseller/broker service) because all the home games are sold out for the rest of the season. Now I know why. Now, I am admittedly not a big baseball fan anymore, but what a pleasure it is to watch a game in this new park. Not a bad seat anywhere, and we were in the nosebleed seats! Even though we had to shell out some cash to get tickets, we were under no illusions that Ali would make it an entire game. We guessed half a game at best (4.5 innings). Well, it was midway through the TOP OF THE FIRST when Ali said, "Daddy, this is BORING." So, cotton candy, ice cream in a helmet, and popcorn were all consumed to keep her at bay as long as possible.

From the stadium, we headed over to Nicollette Mall, then Loring Park. Loring park is an adorable downtown park with a big pond that had fish and geese, playgrounds, and PACKS of squirrels. Gotta admit, I miss squirrels. I grew up with them, then moved to the desert and now that I'm reunited, I love it. I know they can be a pain, but they are so darn amusing - Ali, mommy, and daddy crack up all the time at their antics. We even saw two black squirrels with brownish red tails today. Never seen those before.

After the park, we made our way over to St. Mary's Basilica. This was a joy to behold. The basilica was built in 1908, and is absolutely gorgeous inside and out. We walked in on Sunday evening mass, and stayed for a little while, lit a candle for Bella, and prayed for her together as a family. That felt really good.

Then, it was off to find the bus to take us back to our neighborhood and a little Punch Pizza for dinner to top off the day. After dinner, we headed straight over to the hospital for a little evening social time with Bella.

Please pray/intend/generate that tomorrow's trach change goes well, and that there isn't any infection or other collateral damage. Please also pray/intend/generate that as we "wake Bella up" from her sedation, that the docs quickly find a way to keep her comfortable while letting her brain kick back into gear. And finally, please pray/intend/generate that this waking up will cause the much needed shift in Bella's blood pressure regulation. Man, we need that so badly right now.

God night, and thank you for your support and energy. We are so grateful for all of you.