Bryan, Maddie and I took a quick trip over to Bellevue on Friday for her cardiology check-up. Clinic is now at the brand new, 75,000 sq. ft. Children's Bellevue Clinic, which was so incredibly fancy, clean and state of the art. She's making steady improvements with her appointments and this one had less tears and more self-control on her part. It was good progress for Moom's.
She had the full work-up: EKG, blood pressure, weight/height, sat check, and echo. Dr. Chun was so pleased with the pictures he got from the echo- a clear view of her SVC as well as pulmonary arteries (which is always our concern). They still look like they're staying opened and her sats reflect this at 77%, same as what she came home with post-cath in May. He's very excited about her weight, 13.4 kilos (29 1/2 lbs.) and with the curve she's on regarding her growth chart, she should hit that "magic number" by late spring and be ready for her Fontan surgery. Because she'll have a permanent gortex-tube placed in her heart this surgery, the size is critical. The magic number is 15 kilos or 33 lbs....to put in an 18 mm or 20 mm conduit, which is the goal for the size of conduit in the Extra-Cardiac Fontan Surgery.
The plan is to have a cath in February to determine if she's ready for it as well as a maintenance check before surgery. He said that she'll most likely have the Fontan 1-2 months after the cath, once she's presented to the cardiology team. If things continue to stay the same, we're looking at March or April for her third open-heart surgery at Seattle. She'll just be turning 3.
Upon leaving the appointment, Nurse Barb strapped on another Holter Monitor to our little princess for her pre-Fontan study of her heart's electrophysiology over a 24-hour period. She did really good with it this time and I'll Fed-Ex the leads and monitor back tomorrow. But this was just another reminder that our daughter does indeed have a very serious heart problem... the Holter results will help determine whether pacing wires will be put in during her Fontan surgery. Some kids (many single-ventricles at some point) will need a pacemaker and while the surgeon is already in there, it's a debate whether to just put wires in during the Fontan, just for future's sake. The least amount of times they have to do a sternotomy on patients, the better.
I left with a bittersweet feeling; relieved that she had such a wonderful checkup but the reality of her 3rd surgery really sunk in and my stomach has been in knots. She's closer than further away from her Fontan now and there's no getting out of it. I know I've said that I just want to get it over with but now that it's really creeping up on us, I take it back! It's sad realizing what she'll have to endure with this last operation and my heart breaks just putting her through this. Maddie has done so extremely well with her anatomy that it just doesn't seem right sometimes. We have been so lucky and blessed with her. So we are enjoying each moment...we have lots to look forward to with the holidays coming up and a fun family vacation. We know that God's timing is best and we put our faith and complete trust in Him.
7 comments:
UGH. I know exactly how you feel. It sounds like Aly will be having her Fontan around the same time as Maddie. I'm glad her appointment went well and will keep you all in our thoughts and prayers for a quick successful Fontan and a quick recovery for Maddie.
Amen sister, I'm with ya. It's getting scary the closer it gets. Keep me posted. Looks like we won't be doing the Fontan at the same time.
Maddie had a great report at her appointment and I'm sitting here crying after reading your post. You always write so well and many times it's like you are taking my own thoughts from my head. Cain will have his Fontan around the same time. Looks like many of our kiddos will be having the Fontan around the same time. I know we all have the same feelings going on. Ready to get this one behind us but so scared and sad about having to put our children through this. I'm scared when we have a date set I'll need to be put on medication. I feel this surgery will be the hardest for me to handle. In the beginning I always thought it would be the easiest considering we have gone through this 2 times already but Cain now has his wonderful personality and understands more. These things are going to make it so much harder on me.
Maddie does look so very wonderful. It is hard when the doctor puts things in way that makes it go back to reality. Our family will be praying for Maddie and your family as you prepare the next few months. May God hold your little girl in the palm of His hand, as He always has and always will. God Bless!
So glad to hear that her check up went well! I just love her to pieces! Can't wait for our next play date!
I"m so glad Maddy had such a good check-up, but oh, my heart breaks for you knowing it's almost time! What a blessing that she's done so well, but I think that almost makes it more difficult to know that they need surgery. It does for me. Sometimes it's just difficult to imagine that there's anything wrong (which of course is an enormous blessing!!).
We'll be praying for Maddie and all of you as you prepare for the Fontan. Have fun planning for the holidays and family vacation!
Katie,
My son is also HRHS and will be having Fontan about the same time as your daughter. He will be 3 April 1, we see cardiologist on Feb 14 to set the date for surgery #3. I totally relate to how you feel. I found you thru Team Ewan's blog, praying hard for that family now. Keep in touch.
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