Thursday, September 26, 2013

In a Holding Pattern

I don't do well with holding patterns, with just waiting. You can't be proactive about waiting, can't feel like you're working toward a goal. God is clearly working on my patience with this hospital stay. 

We don't really know anything more than we knew yesterday...except that, unfortunately, we will definitely be here longer than we were anticipating. They lanced the infection and sent it off to culture. Infectious Diseases stopped by today and recommended a picc line be placed. In their opinion, without even knowing what the culture is showing, our best case scenario is 12-14 days of IV antibiotics. If it cultures something more serious, like MRSA, we're looking at a much longer course of treatment. We are hopeful that it is a less serious strain of strep or staph, but given Bodie's history of MRSA as an infant, there is a very real likelihood that we could be dealing with MRSA again. We should know for sure within the next 24-48 hours. 

On the upside, we got to leave the floor! That's actually never happened before for us, since Bodie's pretty much always required continuous monitoring. But I asked whether we could leave the floor and just check back in for vitals, antibiotics, etc. To my surprise, they agreed. Huge, huge bonus for us. Bodie LOVED getting outside.

 And our stellar nurse today, Kat, knew Bodie is fascinated by the vaccuum tube system at CHLA, so she let him send his pumpkin and a letter from one nurse's station to another. He pretty much thought it was the coolest.thing.ever. 

And, our good heart buddy, Jeni Busta, one of the oldest HLHS survivors at 28, came to visit us! Bodie loves Jeni and I so enjoyed having her visit.

Finally, Dusk brought Sierra up tonight, and we got to hang with her a bit, and then she went to a Sibling Event downstairs - a magic show just for siblings of chronically ill children in the hospital. It was amazing. She saw a magic show, and then got to learn a magic trick, and then perform a show for the parents. She loved it - and we loved seeing her get all the attention! Hospital stays are so all about the sick child, so to have something at the hospital JUST for siblings is just amazing and so touching.
Overall, Bodie is doing well. No fever, his energy is great and he doesn't seem to mind too much being here. But lot of up in the air stuff, which has the potential to make all of our lives very difficult, which makes me VERY nervous and VERY impatient. 

So, we need prayers, big time, tonight. 

1. Most importantly, please pray for Bodie's culture to show nothing serious requiring a prolonged course of iv antibiotics or any other more aggressive treatment.

2. The incision site looked better this morning, but by this evening it was looking red and inflamed again. Please pray that the incision shows a major improvement in appearance tomorrow.

3. They are trying to add him onto the picc schedule. Since they don't know when he'll actually get on the schedule, we may be npo (not allowed to eat or drink) in anticipation of sedation for quite a while. Please pray that they can get Bodie on the picc line schedule, the picc line placement goes off without a hitch and that he doesn't have to be npo any longer than absolutely necessary.

4. Finally, please pray for our family to figure out how we're going to handle all of this. Dusk and I are kind of in a tailspin trying to manage an unplanned, indefinite hospital stay while he's working, really in too much pain from his collapsed hip to be driving to the hospital on a regular basis, and Sierra needs to be in school. It's a lot to juggle and we're kind of panicked trying to figure it all out. Not to mention there's a whole lot of emotions involved in this, particularly for me. Definitely another blogpost for another day about that. Quite frankly, I'm too emotionally spent to blog about it right now. But for now, we know that a lot of you have offered to help, and we so appreciate that. Unlike Bodie's last surgery, we will absolutely be taking up every offer of help we can. Right now, we need help. Please be looking for specific ways we'll need help in the near future. 

Thank you as always for your prayers for our miracle boy!



  1. Hi Bodie!

    Wow! Looks like you are having a lot of fun. How fun for you to see Miss Jeni. You guys look so happy.

    I'm praying that you will get better real soon. Okay?

    Love, Mister George from Annapolis

  2. Praying for you. My heart goes out to your whole family. Just reading this makes my eyes well up and my stomach tighten. Stay strong. One day at a time. Thoughts and prayers coming your way. XOXO Kristen @ One in 1 hundred

  3. Dear Amy,
    Anna keeps us updated on our CA friends and called me today asking for prayer for sweet Bodie. You are all so dear to us and we are praying for you all.
    Love, Brooke Hayes

  4. am just getting caught up on blog reading. praying for sweet Bodie.