Starting Feeds

Maddison is having a good day. She has managed to stay of the ventilator and is doing well. She still has some labored breathing from time-to-time but overall she’s holding her own. They have put her on c-pap which is kinda like a high powered jet of air to help pop open her lungs. They are hoping if she gets maximum use of her lungs she’ll take deeper breaths and not have to work so hard.

We were just told moments ago that they are going to start feeds this evening. They are going to start with some pedilite to see how she handles that. Then tomorrow consider mixing some formula in. Her chest tube is FINALLY slowing down. They told us if it continues to drain slowly they will most likely take that out tomorrow! Then I can finally but some clothes on her!

She has had a wonderful nurse today, one of my favorites, TJ who has been taking very good care of her. She even made her bed all pretty and did her hair! That photo is attached. Little by little she is getting stronger. She hasn’t said any words to us yet but she will just stare us down making sure we aren’t going anywhere!

Hopefully I’ll have good news to report on feeding tomorrow!!
Ashley

Maddi is off the vent!

The vent is OUT!! WHOO… They just took Maddi off the ventilator. So far she is doing well. She is breathing kinda fast but otherwise her stats are good. We have our fingers crossed that she will do well. She still has one of the chest tubes still in. Unfortunately it is still draining quite a bit.

They are letting her rest for the rest of the evening. She is on a nasal cannula at 100% oxygen but they are talking about coming down on that tomorrow so long as she has a good night. She got really worn out just by taking the tube out so she is resting now.

Not a long update but a very exciting update! We are moving in the right direction! Hopefully if she wakes up a little more I might get to hold her in the next day or so!

Ashley

Going Steady

Maddison had a quite night last night. Unfortunately when I came in this morning, the nurse said her x-ray didn’t look great. They said it was very hazy on the right side. The doctor came in this morning with an echo machine to see if it was fluid or something else. It ended up being that the lower right lobe of her lung is collapsed. This is the area we always have issues with when she is on the vent.

They went up on a setting on the ventilator that maximizes the pressure going into her lungs in the hopes of getting it to pop back open. They’ve also weaned her down on some of the sedation meds to see if she wakes up a bit she might be able to take bigger breaths. She has started to stir around a bit more, especially when she is getting a diaper change so hopefully that will help.

Her chest tube is still putting out a lot of fluid so they’ve decided to keep that in until it slows down some. So far it seems like it’s going to be another quite day. They said they’d see how her lung looked tomorrow to see if we could go back down on the pressure settings in order to get her off the ventilator.

Keep ya posted.
Ashley

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.