...how the journey to mend our son's broken heart changed our family forever...
Monday, June 14, 2010
The good, the bad and the ugly
First off, the GOOD:
Bodie came off oxygen entirely Sunday morning and has been on room air since! No nasal canula or anything - YAY! And he is an eating machine - he hasn't eaten this well since before he had c-diff and paraflu! So, he's finally gaining weight again - go Bodie! Also, the immunologist stopped by today and said that although he's waiting for all the tests to come back, as far as he's concerned, the fact that Bodie's still alive and not on the vent after having had Paraflu tells him that his immune system is probably working just fine (scary way to put it, right?) And, Bodie's friend Addie that so many of you have been praying for WENT HOME TODAY! So, definitely lots of good to report today! Praise God!!!
Ok, Now to the BAD and the UGLY all in one:
Well, Bodie's blood infection turned out to be MRSA (medically resistant staff). The hospital's standard protocol for first-time MRSA break-outs is 6-8 weeks of I.V. antibiotics. Yes, you read that right. SUCKY. If Bodie were otherwise stable, they'd probably let him go home on the iv antibiotics and just teach us how to administer it. But Bodie has shown, if nothing else, that when he gets sick, he GETS SICK quickly. So, they're questioning whether he'd even be stable enough to go home before the next surgery. This wouldn't be such a big deal if they could do the surgery as we had tentatively planned, sometime in June/July. The problem is that Infectious Diseases may say he has to be completely done with the antibiotics before his next surgery (you don't want to go on bypass with an active infection since the body does all kinds of crazy stuff on bypass; so the question is whether his would be considered an active infection). In that case, we could be looking at being in the hospital another 9 weeks +. Yes, I may lose my mind if that ends up being the case...at the moment, they don't really know - Infectious Diseases will be working with cardiology over the next few days to figure out their recommended course of treatment.
As for Bodie being stable, he is clinically doing much better, but his BMP is still much higher than it should be (it started to fall but then jumped up again this morning) which means that his heart is just working harder than it should be. Likely due to his infection, but they also did a wean on one of his heart meds yesterday, Milrinone, and it could be in response to that. Either way, Bodie is still not quite where he should be and will be in the CTICU for a while as they figure all of this out.
So, you guessed it, we have LOTS of prayer requests tonight:
1. Pray that Bodie's BMP drops and we know his heart isn't working quite so hard.
2. Pray that the antibiotics are effective so that his blood cultures start coming back negative.
3. Pray that Bodie continues to eat like a madman and gain weight.
4. Pray that the Infectious Disease doctors and cardiologists determine that Bodie does NOT have to do a full course of 6-8 weeks of i.v. antibiotics; or, if they do, that they'll decide he's stable enough to do it at home.
5. Pray that Bodie doesn't catch anything else.
6. Pray for our family, especially Sierra. It breaks my heart that her whole world has changed so much and she doesn't get nearly the attention from mommy that she needs. She's having a rough time with the fact that this has now been going on for 4 months and there's really no end in sight. Pray that we would find more people who could sit with Bodie so I could spend more time at home with Sierra and distribute myself a little bit more evenly between the two kids.
Subscribe to: Post Comments (Atom)
I will pray!! And, I will pray for Sierra. This must be so difficult for her and for you guys! I would come sit with Bodie if I could but I have my own heart baby to care for.ReplyDelete
AMY -- I AM here for you, let me know when you want me up there!!! Lots of hugs to you!!! SaraReplyDelete
This journey has gone on much longer than anyone could have anticipated. I know you are thinking you're going to lose your mind. And maybe you will for a brief moment or two, but then you will find within yourself and those around you the ability to face another moment. Don't think about facing another day...just the next hour. And soon enough, those hours will add up to one day, then one week...and so it goes for a mother when her child is in the hospital. You can do this! Your faith is strong and it will carry you as long as it takes.
The other thing I wanted to say is to be sure to advocate with the cardiologists and infectious disease doctors about how much this back-and-forth is affecting not only you, but your daughter too. I found that often the doctors only saw Everett as a sick belly or a very small baby. They didn't see the family that was aching and falling apart behind him. When they wanted to keep him at CHLA until July without considering surgery, I told them they would HAVE to come up with another option because they were ripping my family, my marriage, my life, my child apart at the seams. Once I said this, they finally saw Everett as part of a family, who were just as "sick" as he was. And then started to listen, and they did surgery two weeks later. If you want Bodie home, tell them. Tell every doctor. Say it as often as you need to. They need to know that you and Dusk and Sierra ache and are "sick" too.
I sit with Bodie in my heart everyday and only wish that I could do more. You are strong. He will come home.
My darling Amy.ReplyDelete
I will and have been praying for every prayer request you have. Bodie is "my love" and I will do my part to help your family. I will also pray a lot more for sweet Sierra. She really is a sweet and beautiful girl. God bless you all, and thank you for allowing us to be part of your journey (to recovery). I believe for great things for my Bodie. May God's hand be upon him, ALWAYS.
My prayers and love - I've tended to think of this as Bodie's journey but it is also Sierra's too. Love to each of you.ReplyDelete
Oh Amy, Two steps forwards is met with one and a half steps back. I can't help but stress what Sara said. LJ's heart condition is no where the extreme that Bodie's is. When I wanted LJ's surgery sooner than later after it was clear that balloon catheders weren't working, the Dr's were wanting to wait MONTHS! The cardiologists reminded me that LJ wasn't the worst case they had now. But I had to remind them that LJ is the worst case that I had to deal with. That I wanted him well and if there was a surgery date open then I wanted it. We got the surgery week we were wanting. Just as Sara said, the cardiologists are great people who do amazing things but they deal with so many kids that it is easy for them to forget that they are kids more than just patients. Of course, if they feel it would rise Bodie's health or life by going into surgery now, then that is a good excuse. But lift your voice and be heard.ReplyDelete
Still Praying!!!! You are doing an amazing job! You might feel like you may lose your mind if things go as you'd like them not to go but I know that God gives us the strength we need just when we need it and it's so nice that we don't have to rely on our own strength!ReplyDelete
Love and Hugs,