Thursday, March 15, 2012

Home


It's been wonderful to be home.. It's just crazy to me that we are done with the Fontan. I can't say how amazing it feels to say that. It's hard to describe what it's like to wonder and worry and speculate and dread a surgery for 4 years. I had no idea what to expect since she was so little with her previous surgeries. And I can't believe 8 days later we were home. Done. It's DONE! Feels soooooo good.


The last few days have been a little rough for Bela. She is restless and uncomfortable most of the time. It's just going to take time. It's hard to be patient for her to come back to me because she was just too good before... I have to remind myself that it's only been 10 days. I just miss her.

She wants to be held and dosn't want to walk too much. She isn't sleeping too great either. She threw up a couple times yesterday but didn't throw up today at all. I think she just needs to get all the drugs out of her system. She got a ton. She's on a ton too, can't wait til some of these are gone! This is just her 9 pm meds. Her schedule is crazy again, but lots of these will be gone soon.



As far as her arm and hand, I am feeling very hopeful because we're seeing her use it more. Today she was able to make a thumbs up with it! Her NP was finally able to give us a possible cause.. she thinks it may be peripheral nerve damage from her arterial line. It's uncommon but can happen. All that matters is that it will come back to full function. Such a scare, but it's all going to turn out ok.

Her heart is being monitored 24/7 with a portable EKG monitor for the next 3 weeks because she was having some rhythm issues. I'll find out how she's doing when we have our first appointment on Tuesday.

It is so good for her to be home. The real healing and recovery happen at home. I am so happy that she can be back with Benson and Ruthie. She just needs to realize her happy little life will go on and I think she's going to be just fine. I love her to death, it's hard to see her struggling, especially since she was doing so stinkin good. But we'll get back to that girl, even if it takes a little while.

Thank you for your help getting through the last couple weeks. We are blessed with the most amazing family and friends. We've felt your love and are so grateful for it. Thank you from the bottom of our hearts.. especially Bela's. :)

11 comments:

Katie said...

Amazing!!! So happy Bela is home and doing so well just post-op! Yes, it's such a relief to have the Fontan over with. We're coming up on our year anniversary and it's been the best thing for Maddie. She is as healhty as she's ever been :) Congrats to you all and heart hugs!
Love,
Katie & Maddie (HRHS, 4 yrs., Washington)

Lila said...

Been thinking so often of all of you. Recovery just isn't something you can hurry. Maybe that is good that we can't. It takes time to mend something perfectly. You have all been so patient, a resounding lesson for all of us that watch and wonder with you.
Love, Lila

Rich, Shelly, and London said...

If only I could fast forward to next week... :) It'll be a great feeling to have the Fontan in our past. That little Bela has had quite a traumatizing week, and I'm sure she is so happy at home. I hope things continue to go up from here! Thinking of you guys!

Deborah said...

you guys are amazing! i'm so glad to hear that you are back home!! little bela is my hero :)

Dianne said...

So glad to hear that Bela is home...been praying for her and you. It does take a lot of time for them to recover from something so traumatizing. I think the emotional part takes longer than the physical. Will continue to pray.

Ali said...

Everytime I read your posts, I have tears streaming down! I can't tell you enough how amazing and inspiring you are. She will be back soon and every happy moment will be even sweeter.

Andrea said...

You are amazing Avery and what an icredible little spirit Bela is. Glad things are going well and that you are home and can be together as a little family. You are such a great example to me.

Sean said...

Hi Avery, I served in BH when your Dad was President and I am also friends with your mom on FB. She has kept us posted on little Bela. I have a daughter the same age as her. She is always asking me how Bela is and loves hearing updates. She is so happy that Bela is home and is feeling better. We will keep you and your family in our prayers and look forward to the future updates.

Auburn said...

Amazing! Still can't believe she is home. I pray that her spunky little self will be back before we know, and I pray that you'll be able to get through this too! You all are amazing!

Autumn said...

I was told about your story from a good friend and told to go visit your blog. As I have read through your blog postings I am truly touched at the spirit Bela has. Bela and your family is inspiring to me and many. Thanks for sharing your wonderful story that gives me hope for everything.

Dallas and Krista said...

Just thinking about you tonight. Why have I not come to see you since you've been home? Please forgive me? Hope all is well still. Loves.