Keeps getting better!

Maddison is having another good day. She’s finally gotten some of the fluid off of her so she’s not quite as puffy today. They are planning to take 2 out of the 3 chest tubes out today! We are glad about that. They are also weaning her oxygen levels on the ventilator and are in hopes of getting that off of her within another day or two!

She’s been very quiet today, only a few times has she acted like she hasn’t felt good or something has been bothering her. They did tell me that she spiked a temp of 103.4 in the middle of the night and she still feels a tad warm today. They are hoping there isn’t any infection setting in so they’ve done cultures to rule that out or are able to find what they need to treat. Just as a preventative they have gone ahead and put her on antibiotics.

The photo below is Maddi with some of her new “friends”! Mike & I got both girls (Maddi & Mackenzie) matching pink hippos so that Kenzie could know that she can hug the pink hippo whenever she wants to think of Maddi. And she also got a cute little Lamb Chop doll from LAR… very thoughtful! (LAR is Lakeland Association of Realtors, a company my mom works for)

We’ve also received some donations from friends and family. Please know that we are SO grateful for that extra help. It truly is a blessing to know how thoughtful everyone can be in a time of need , we so appreciate it!

I’m sure I’ll have a new update to blog tomorrow! But so far so good!!
Ashley

Maddison's Second Open Heart Surgery

Maddison came in for her second open heart surgery on the 21st of February. It was a long day, over 10 hours in the operating room but we got through it. Maddison did great and she is recovering well. They did have to leave her chest open for 24 hours just to allow some swelling to go down. Yesterday they were able to close it and she is doing quite well at this point. Today they had hoped to get the chest tubes out but she is still putting out a lot of fluid so they've decided to keep them in for another day or so.

She is retaining a lot of fluid at this point so they went up on her Lasix which allows her to get rid of fluid faster. Her feet are so puffy and big! They look like they could pop! Overall there is not a lot going on today. They are going to take the RA line out of her chest today which is a pretty small line but apparently a big deal to come out so we are happy about that. They will reconsider taking out one or all 3 of the chest tubes tomorrow after the Lasix has some time to work.

They are working slowly on getting her off the ventilator but they can't completely take her off of that until the 3 chest tubes are out. We hope within the next week or so she'll be on her way to waking up. The worst part is not being able to hold her and talk to her.

She is a tough cookie though! She's strong and has a great will to live that's for sure. It always puts a smile on my face when I have a nurse or doctor come in and tell me that she has exceeded their expectations! Couldn't ask for more.

Thank you to everyone who is keeping our family in your thoughts and prayers!

Ashley

Below is a photo of Maddison today, Feb. 23rd with her chest closed.

Maddi's Upper GI

So 6am came this morning and we were up and getting ready. I can’t remember the last time I got up that early. :o) Anyways, my mom came with me to Orlando, they took her in around 9:45am for the test. They said (once again) that the Nissen was still the way it was supposed to be, she did retch and gag although she didn’t throw up and they said even when she did that they didn’t see a problem and there was nothing surgical they could do. They even waited about 10 minutes after giving her the dye and came back to see how quickly she emptied and they couldn’t even get 5cc (out of 60cc) back out of her.

So this was a dead end. They sent us home which was a load off but now we are back to the beginning of what to do to keep weight on her. So my thinking way, if they gave her 60cc of barium within 2 minutes maybe I can give her 60cc of formula that fast and see what happens. I’ve given it to her super s-l-o-w and then kinda medium but never super fast. I mean she throws up no matter what right?!? So today after getting home we’ve given her 4 bolus so far of 60cc at a time ever other hour. She threw up on the first two, but no more than usual, and then she hasn’t thrown up at all these past 2 times.

I don’t think this will be the solution to her not throwing up at all because she just does that but maybe if I can get it in her faster it will empty faster, and if nothing else it doesn’t seem to do anything different if she gets it fast or slow, so if we aren’t hooked up to a feeding pump all day that’s a plus right there! I can just control when she pukes instead of it being hit or miss!

So for now they told us to go home, do what we’ve been doing and wait until her next GI visit which isn’t until April 14th. The x-ray tech said if her GI doc wanted to speak with me prior to the visit he would call. So I guess we’ve kept her home for now and we’ll just try different ways of feeding her. We need to pray for FAT!! Haha… we need to pack some fat on this girl! I’ll keep ya posted on how the bolus feeds are going and what her next visits bring. Thanks for all your thoughts and prayers for her visit today!

-Ashley