Fontan 2


We've been back with Bela for about an hour.. I can't take my eyes off her. She's done and I can't believe it. It's so nice to be through with that part. She is resting pretty peacefully and still pretty sedated, but is beginning to stir. When she does she gets a pained look on her face. This is a very tricky period and one that is always really difficult for us to watch. She needs to wake up enough to be able to come of the breathing machine and so she will feel pain and discomfort and get really upset. Her little arms are already restrained in anticipation of her waking up.

She did have a couple issues during surgery we were just told about. She had some arrhythmia issues and SVT (her heart rate was way too fast) and she needed to be paced back to a normal rhythm a few times. But since she has been back her numbers have all looked good. Praying they stay that way.

I feel so bad this time around wondering what she's thinking and feeling. If she is wondering why she came here perfectly fine and is waking up feeling who knows how bad. I can't imagine what it feels like to have your sternum cut open and pulled apart 4 inches and then sewn back together.

I feel seriously in AWE today of what has been done to give her life. I'm so thankful for it. I feel peace and comfort today so I KNOW that she does too.




Comments

S and K said…
She is such a trooper! It's so hard to see spunky, cute, Bela like this. She so strong & such a fighter!!! She never ceases to amaze me! I hope she gets her breathing tube out quick & that the rest of her recovery is quick too! Tell her we're all thinking about her & praying hard for her! I just love that little girl!!!! As always thanks for the update!!!!
March 5, 2012 at 3:46 PM
The Simmons Family said…
She looks really great! I can't wait to hear how her sats are after extubation. Waking up is the hardest, then the few hours after extubation are near killer as they can't drink.. and it's the ONLY thing they want. Ugh. Prayers for a quick recovery. Arrythmias are totally common immedietly after the Fontan (or so I've been told!)
March 5, 2012 at 4:44 PM
Ali said…
Amazing - to think what she's had done, and then see how good she looks without the breathing tube, etc. So humbling! So happy and grateful for your good news!
March 5, 2012 at 5:18 PM
Grafton and Laurisa Milne said…
oh i can't bear to see her like this. What a brave tiny little body. I'm so glad everything went well...i've been thinking about you guys all day... You are so strong Ave, you inspire me. I love you, and that little angel. Good luck the next few days. Let me know if there is anything I can do.
March 5, 2012 at 8:29 PM
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