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. :)

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)
March 15, 2012 at 9:41 PM
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
March 15, 2012 at 10:13 PM
Anonymous 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!
March 15, 2012 at 10:17 PM
Deborah said…
you guys are amazing! i'm so glad to hear that you are back home!! little bela is my hero :)
March 15, 2012 at 11:27 PM
Anonymous 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.
March 16, 2012 at 6:39 AM
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.
March 16, 2012 at 8:55 AM
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.
March 16, 2012 at 11:32 AM
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.
March 16, 2012 at 1:20 PM
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!
March 16, 2012 at 3:02 PM
Unknown 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.
March 26, 2012 at 10:39 PM
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.
March 28, 2012 at 8:55 PM
Bacteriostatic Water Australia said…
It was a good and thank you for sharing your wonderful story. You can also visit Sterile Water to get different kind of knowledge
November 17, 2020 at 1:32 AM
Anonymous said…
Omg I'm so happy to share this!!! I've been thinking I've lost my mind and it was some mental case. I myself had my tubes tied after my 3rd child. I have a condition that makes having babies so hard on my body. About 6 months ago I too would feel something like "kicks" of course I thought I was out right crazy. I never spoke to anyone about what was going through. How could I? They'd think I was nuts!!! Well my periods have been getting so bad that I reached out to my best friend who also had the operation to see if she had experienced any symptoms with her periods since! Of course we were in the same boat. I broke down and told her I almost felt at times I was pregnant I felt so crazy just typing this out to her. I was beyond nervous she would think it was a nut case. To my surprise she also had similar symptoms. We both are researching what this could be. That's when I came across this website on Google of dr Itua Herbal Center. While scrolling through these comments I stumbled upon how he treated HIV/HHerpes also helped a woman to get pregnant with his herbal medicines. When I read what he had been going through I just broke down and cried for the longest time. Finally I got a help that I ever wanted I and my friend purchase Dr Itua herbal medicines and we both used it which was really effective it cure my cramp issues so I will recommend anyone going through some health issue to contact Dr Itua Herbal Center on E-Mail : drituaherbalcenter@gmail.com Or Whats-App +2348149277967 He cure HIV/Aids, Herpes, Cancers, And other stubborn disease make sure someone here talk to someone about this who is going through the same thing as us. Ty for sharing. I now know we're not alone!!!
March 20, 2021 at 9:24 AM
Post a Comment

Popular posts from this blog

Transplant 2- Honoring her donor, and her Aunt Ju

Image
Early in the morning on October 23rd, Tanner got a phone call that his sister, Julie, just a year and half older than him, had passed away. My sweet mother in law had to receive this devastating news from Bela's hospital room. Although Bela was unaware of all of it, at the same time they were helping my mother in law just outside her room in the hall, Bela's heart rate shot up to 180 and her rhythm went crazy for about 3 hours until they finally got it under control. We still don't really know why, most likely her heart telling us it was nearing its end. In the late hours of that very same day we got the call we had waited for for 11 months. A match had been found for Bela. Tanner had already decided he wanted to sleep there with Bela that night.  As hard as this hospital stay was becoming, there was a tangible peace being there with her in that room.  When he was woken up with the news that night, he stood in the hallway outside her room and wept as the flood of emotions o...
Read more

3 weeks out and doing great!

Image
Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how...
Read more

First transplant post

Image
This space used to be very healing for me. I wish I never would've stopped documenting here...I love knowing the first 5 or so years of Bela's life were well documented. But as I sit here with the familiar view of her hospital bed and sounds of beeping monitors, it feels almost necessary for me to write here again. Bela has had 12 incredible years of living life since my last post on here.  We were getting really comfortable with our cardiology appointments every 4-6 months, endocrinology every 3-4,  bloodwork every couple months, and occasional MRIs, procedures, or trips to the cath lab. Life has been full and so good. She's traveled a ton, ate a lot of good food, hung with friends, participated in theater, and found so much joy in her simple but rich life. We also had two more kids in that time.. more chaos and more love.  I don't know if anyone will still look for and find this blog looking for hope for HLHS, but I hope so.  We've now been inpatient listed for he...
Read more