Mostly, it was an okay day today.
Good news:
Dr. Tolar began to wean Bella off hydrocortisone today! I couldn't stay for rounds today (they were 2 hours LATE) but he met with me before hand and I laid my case out for him, including 3 research papers (2 from one of our readers in Portugal, thanks Carla! and 1 I found myself) that attributed left ventricular hypertrophy to hydrocorstisone. The good news? After the hydrocortisone was discontinued, the hypertrophy went away. When Dr. Tolar walked in, I was reading one of the abstracts, so I just handed him my computer and he smiled. I told him about Carla, and that I have a world-wide following doing research on behalf of Bella. He liked that a lot.
They discontinued one of Bella's antibtiotics today as she shows no visible signs of infection. They will most likely d/c the 2nd antibiotic tomorrow.
The Prisma crashed this morning around 6 and they got her back up on a new circuit by 11, which frankly on a weekend, I am quite pleased they got it back running that quickly.
The weaned Bella's one of Bella's other drugs, norepinephrine, to just a whiff.
The bad news?
Bella is still on Esmolol. Why? I have no friggin' idea. I still feel like I'm taking crazy pills on this one. Esmolol lowers blood pressure primarily. Secondarily, it can lower heart rate. They can't give her the dose they think will lower her heart rate, because it lowers her blood pressure too much! Does any of this seem strange to you, too? Low blood pressure is Bella's problem, not her goal.
One thing I can promise you. Bella will not be on Esmolol by this time tomorrow. Due to the weekend schedule, I missed the cardiologist that is behind this bizarre plan today. I will be hanging around like a virus tomorrow till I corner this person if they are not in rounds, whatever time that ends up being. Even Bella's nurse started hammering the resident this evening, because the plan CLEARLY isn't working. Bella's heart rate has not moved an inch, and her blood pressure has tanked yet again, and now they are having to give her more of the 3rd blood pressure drug they started yesterday to compensate for the Esmolol.
Makes. no. sense.
In other news...
Ali got to go on a play date with her friend Ellery to the Como Zoo today. Thanks, Logan, for taking them! This allowed me to actually work for two hours (I actually work still about 3 hours a month doing consulting from here).
After, Angelique and I went to Minnehaha falls and had a little picnic! There is a really cute little spot below the falls where you can wade in the water that I CAN'T WAIT to get Ali into soon enough! We also took some time to do laundry and clean the apt... things that pile up during the week. Tomorrow, Ali wants to go to Mall of America, and she'll either go just with mommy while daddy dukes it out at the hospital, or I'll 'clean house' early in the morning and get a chance to have some fun myself.
Thanks for your unending love and support, Good night.
Good news! Go get 'em tomorrow!
ReplyDeleteSeriously? That first picture? The hip out, glance over the shoulder...so sassy! I love it! Glad you and Ang had some time for peace...and work. Beautiful pictures...have a restful night. (have I mentioned I love your early posts?!)
Go get them tomorrow Tim. Grandpa Rodger says "Rockem Sockem"! Can't wait to hear how it went.
ReplyDeleteLove,
Grandma Carolyn
It's almost 4:00 am in Portugal! That's how much I am addicted to your blog! :)
ReplyDeleteBut it was worthwhile to stay wake! 'Loved the good news!
It is really insane the way they are filling Bella with meds... Blood pressure is deeply related with heart rate due to our natural baroreflex control. When the heart rate goes up baroreflex pushes the BP down, and the same for the opposite. They just need to "fix" one of them, and the other will be corrected "automatically"...
Make sure the cardiologist has a good reason for keeping her on Esmolol.
Keep the faith. I have this deep feeling that Bella will surprise us all.
Carla
Dear Mr. Tim,
ReplyDeleteI think you are a WONDERFUL advocate to EB kids. Are you sure it isn't in your future to stick around this hospital (you can get a medical degree :))and make sure things are done right for these kids?? You take the time to do the research and you think through the issues LOGICALLY instead of just haphazardly throwing a new drug in the mix. Think about it. You may just have a new calling......
Dear Bella,
ReplyDeleteYou've come too far and too many of us are awaiting your return - you know - the day when you declare that you were born with this rare disease, went to the hosptial and they cured you! Tonight we pray for your heart... all those meds... and your mommy & daddy. May our Lord send legions of angels to watch over you this night.
Love,
Aunt Mary
The comment...hanging around like a virus...got me chuckling. Go daddy! It almost seems like you have to be a doctor to keep everything straight and to straighten everything out. Bella is so blessed that you are her daddy and you are watching out for her and fighting for her. I hope this gets figured out soon. Denise, WI
ReplyDeleteI'm glad to hear the Dr. listened to you and took Bella off the steroids. Hopefully it won't take her heart long to heal itself. Lots of prayers coming your way tonight. Stay strong.
ReplyDeleteTake Care,
Amber McLaughlin,CA
So glad that you guys got out for a little date. Minnehaha Falls is one of our favorite spots! Praying for Bella.
ReplyDeleteHi Tim: I sure hope you tracked down the cardiologist and convinced him to take her off of esmolol. I really think that common sense is one of the things that doctors don't have sometimes.
ReplyDeleteBeautiful Bella is so lucky to have her Dadddy in her corner and watching out for her all the time. I agree with one of other bloggers and think you should stay there and help when other EB children go through this procedure. That would be wonderful. They would have a wonderful advocate looking out for them. Think about it. Maybe God has a plan for you. Do you ever wonder why your daughter was born with a disease that is so friggin rare.
I know the winters are a little brutal up there, but hey you guys are so strong, you can do it. Love you guys. Take care. Love Leah's Nana
Go Dr Tolar! Good luck with the cardiologist today, sending lots of prayers that he will listen with an open mind...and do the right thing for Bella. Missed seeing her today...but so happy so hear that Ali had a fun day, and that you and Ang were able to take some sweet time for yourselves. Blessings to all, and for Bella, beautiful baby girl, who will be well!
ReplyDeleteYour girls are so fortunate to have you on their side. So many parents aren't equipped to go to bat for their kids the way that you do.
ReplyDeleteLifting up your family!
Your virus remark made me smile. I love that you and Dr. Tolar are seemingly on the same page, and can't wait to hear how your meeting with the cardiologist goes this morning. I think that many times drugs are added to a regimen as a "band-aid" for a temporary condition, and that due to the number of people involved in a case (and no one wanting to step on anyone's toes) they're not questioned as the cause of a new issue. Did that make sense? Hope so.
ReplyDeleteGlad you and your girls got a little R & R; hope you're able to do the Mall of America today. Can't wait to see tonight's post!
Good news on weaning little Bella off some of her multitude of meds,good luck today! The Falls look gorgeous...I am so glad you are finding some time to do stuff like that. All our love and prayers.
ReplyDeleteThe Gleason's
I am so glad to hear they are finally weaning Bella of off some of her meds! This poor girl needs a break. I sincerely hope today went well. Glad you and Ang got some "me" time together.
ReplyDeleteIt was a pleasure meeting you this past week! You guys are a wonderful, sweet family and it was such a joy to see you in person.
Many blessings,
(Daylon's Aunt) Jess