Back to the appt, her sats ranged from 72-77%. Dr. Chun explained that this is probably as "good as it's going to get for Maddie" and she's not going to be a high satter...even after her Fontan, he said we'll be lucky if she sats 93. Her pulmonary arteries are small, even with the ballooning she had in May, she's not able to produce higher oxygen saturations. Most kids at her stage have sats in the 80's then start trending down as they grow and need the Fontan surgery. Maddie doesn't have a lot of room for trending down which puts her in need for her Fontan sooner than later.
We talked a lot about this next big surgery...how it's "just a Fontan" and not a fix or cure. Of course I already knew this but to hear Dr. Chun say these words was tough. Her heart condition isn't fixable and that's difficult to wrap my mind around. There are many complications that can still arise, so it's never really over like I'd want it to be. I've spent so much time gearing up for each surgery, trying to prepare and focus on the "next step" that when step 3 was over, it feels like we should be "ah-done" with procedures and she shouldn't have to endure anymore pain or discomfort. So I'm trying to stay positive and give Maddie's broken heart some credit...she's done exceptionally well and hopefully will stay on this same track.
As for the plan, Dr. Chun hopes she won't need any intervention until next spring when she'll have her pre-Fontan cath and then we'll schedule her surgery for summer. So a year from now is surgery #3. She'll be an earlier Fontan than most kids at Seattle Children's (they do the external conduit Fontan and like to wait until 4-5 yrs. old), so weight gain is still our priority. She'll have a permanent gortex conduit put in with this surgery and the size of this shunt is critical for its success. We need her bigger so she can have a larger shunt placed that she'll be able to maintain for life. She's 12.6 kilos right now (27 lbs.) and we'd love her to be at least 15 kilos (30 lbs.+) for the surgery. Good thing she's still enjoying eating. What a blessing this is. We'll head back over for her next appointment in September.
Even though doctor's appointments are no fun for Maddie, we're making some special memories going to them.
As for her "current status", Maddie's battling a bad case of thrush in her mouth due to the amoxicillian she was on from a recent ear infection. Her left ear still isn't clearing up so she's now on Bacterim and the yucky, painful sores in her mouth are finally starting to heal. So much for gaining weight! She's pretty much been on a liquid diet since Thursday.
6 comments:
Glad to hear that besides the ear infection and thrush Miss Maddie is doing well. She looks fantastic in the pictures. And no, you are not the only heart mommy that cringes when you have an appointment because you know it is going to be full of tears...hopefully as they get older, it will get better :0)
She is amazing!! Even with the low saturations..you would never know.
Stanford, like Seattle, pushes off the Fontan until "later". I keep praying that Owen will improve (by the grace of God) and will qualify for the Fontan. Even then.. it's never over. :(
PS...
LOVED the pictures of your house. I don't know if I got a chance to comment on it! :)
Glad to hear that things continue to go well for Maddie. Saying many prayers that this next year will be filled with so many wonderful memories for all of you as you await the fontan.
Appointments will get better when she is older. When Jax was four and we drove into the hospital parking lot he would start begging "please Mommy no, let's go home Mommy" and the worst "Let's go I'll be good" killed me everytime. The appointments are still no fun but at least he know it's for his benefit and because we love him. Helps soooo much when that realization comes. Let's start praying the "cure" for Miss Maddie, is found--preferably sooner than later.
We are always watching to make sure Maddie is doing well and im so happy to see her growing like a weed. She weights almost as much as Alissa. Im still worried that one day im gonna come on and find some news that isn't so wonderful. Just remember that you guys are always in our thoughts and prayers. We couldn't be happpier to see maddie doing so well. We love you guys and would love to get together sometime soon. The baby is coming on July 29th so maybe in august.
She is such an amazing little girl and you are an amazing Mom. I can feel the hurt and how worried you are in your words you type. My good heart aches for Maddie's broken heart and for you and your family. My continued prayers are with you everyday.
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