Update @ 11pm: Drained 300 cc off during the procedure & since being back to the floor, she's drained another 260cc. This is lots of fluid coming from 1 chest tube/pleural space. Fluid is being checked out, doesn't look chylous. Has 1 IV in right hand. She didn't have to be intubated for procedure, just under anesthesia w/ gas mask on. Maddie ate & drank well tonight and her breathing isn't as labored. Sats are up now too, mid-high 80's, so much better there. Now we just wait & see. This isn't uncommon to happen, she was still considered to be in recovery and fluid can pop up, that's what is frustrating about the Fontan. Just was nice to get a taste of home. Mom is here with me & thank goodness I packed a light hospital bag for "just in case". So proud of Maddie and how she's taking this. What an accepting, mature girl we have for only 3.
Maddie had her first post-op Cardiology appt. with Dr. Chun this morning in Bellevue...long story short, she's now admitted to Children's and currently in the Interventional Radiology Lab getting her right lung space' fluid drained off and a new chest tube put in. Ugh. The last few days she's been "off" and I attributed it to tiredness, finally settling into home, not eating as well, not taking pain meds, and a little bout with diarrhea. Well, her right lung was collapsed and sats were 69-71 today in the office from this whopping pleural effusion. So we're back. Most likely, she'll be here a few days to see if the fluid will accumulate again. Unfortunately,this can be par for the course with Fontan recovery. I'll update later after her procedure is done and when she's settled back into our room on G4. Please say a prayer for Miss Maddie...she still needs them.
13 comments:
We are fighting the fluid as well....
I'm sorry Katie! Not what I wanted to see on here, but grateful she had the appt and is getting the care she needs. Do you think this had anything to do with the headaches she was complaining about? Hang in there, hopefully she's out again in no time.
just prayed and will continue too! is this the same as chylothorax? much love.
Oh I am so sorry. That is a huge fear of mine every day...each time the breathing seems a little shallow, or the nap is a little longer than normal. I hope that they can get it all drained off so you can get back home soon.
I just tucked the kids in bed & we prayed for Maddie & I thought I would check & see how the cutie pie is doing...not what I expected to see! So sad to hear this update! I'm sure thats the last place she wants to be!!! We will be praying for sure!!! Love & Blessings
Ugh is right. But we'll certainly keep sending the prayers your way.
So sad to hear about the troubles. Our prayers are coming your way. Loved hearing she was hungry and wanted Mac & Cheese at Nany's house. So sweet.....Thinking about you.
Oh Katie-
I am so so sorry! There is nothing fun about going back! We were just back too...
I have been thinking a lot about you guys and will pray pray pray that it is a short visit and she can recover and get back to running around soon.
She is such a champ! look at her! What a precious girl. Big hugs from Utah!
Again, wish I was there to hang out
Katie, I am so sorry. This sounds almost exactly like Maggie's recovery only hers was chylus. She was home for almost 2 weeks and seemed "off" just like you said. So, I took her in and they drained off 600cc's. The encouraging thing is that Maggie basically doesn't remember very many of the details of her fontan. It has all jumbled together. She remembers bits and pieces but not all of it. I will be praying for Maddie. I pray that she will get out of there very soon! I hate that she had to go back. Lots of love, Faith
On Katie I'm sorry to hear this. Keeping Maddie in our prayers for this fluid to clear up.
The prayers never cease Brian and Katie. We just keep them coming. We just got home from Cheney and I heard your mom's phone message. I'll try calling her this afternoon. Sending love and hope that you all will be home again soon. Hugs to Maddie.
I had no idea that you have been through such a journey.
My 4 month taste of the NICU with my twins gives me so much respect for what you are going through. My heart hurts for your little Maddie, she is so strong!
I don't know if you know me, but I am one of the Gilberts and I feel like anyone from Royal is family... we are sending our thoughts and prayers your way too.
So sorry to hear that you are back. That is no fun! Praying for you guys... Jessy, mom to Grace (HLHS)
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