Next steps

We are making progress in the right direction here. It started with getting that ventilator out and 10 hours later the eating began.

It has not stopped since

Ivy spends her days eating, playing with stickers, covering her arms and feet in lotion, and watching Dora. 

                     This is the veggie chip bag she decorated with stickers!

                                       
                                    This is the food coma she slipped in to (kidding)

We had so many lines coming from every direction that it has been hard for her to even turn her head to the left and right. She had lines coming out of each side of her sweet little neck. One in each hand/wrist. Her 2 canal PICC coming out of her upper arm. Another coming from her foot. A chest tube coming from her chest. The feeding tube coming from her nose. The oxymeter on her toe. The blood pressure cuff on her ankle and the cardiac wires from her chest! What a mess!! She was trying to be still all the time, afraid to get tangled. 

Taking silly pictures of ourselves!

Well today she got a few of these things off of her body. Her neck is free and one hand is free!! A great day!
We were given the thumbs up to go on a ride in the ~go cart~ but she cried crocodile tears when I offered so we stayed in the room. She associates that big cart with going for procedures. Blood draws, new IV's, invasive things. She wanted no part of it! I think she has very good reason to feel that way so we got that cart out of our room and went about eating Cool Ranch Doritos and watching Dora. We watch way too much Dora. And she eats huge amounts of Salty Snacks in hopes of getting that sodium up but no luck so far. Her potassium and sodium are still low. She eats 2 baked potatoes a day. They are loaded with potassium..... she just pee's it right out. So we continue to let her graze on Doritos and salted nuts and veggie straws between meals as well as supplement and just hope that her little body will start to absorb it all.

She is taking in enough calories that they actually want the feeding tube to come out. I wanted to keep it because she can't tolerate potassium by mouth (I don't know who could?) and she still takes a lot of meds by mouth at this point. Putting it in the feeding tube has allowed her to skip all the nausea that would be brought on by that many things going in to her at once. So it is staying in for now.

This picture was taken just hours after she got her breathing tube out. Sitting up!

Ivy has 3 air pockets in her right lung. She still has a chest tube and that tube has had a leak in it since the first day so her surgeon has been watching this closely. This lung issue and the fact that she is still being weaned from the RX Milrinone, are the only things keeping her in the CICU. If it doesn't start to go away or at least shrink it could cause her lung to collapse. Right now she is not showing any sings of distress. Her Sats are very good. They took her tube off of suction today and changed it to a water seal. If this is not going to resolve itself they are going to get a really good idea of that on tomorrow mornings x-ray. So our hope right now is that it looks smaller tomorrow. If it does not start to resolve itself then she will have to go back to the OR for a new chest tube, placed up higher this time. 

Ivy's Echo revealed that her left ventricular function is great! Her Mitral vale is working beautifully and therefor her left function has returned to normal! Her right side shows less than desirable grades. Doable for a super hero like our girl, but our surgeon says that her right coronary artery is pretty tattered up and is what is causing the issue. We will just keep on cheering on those God made bypass veins and she will take coumadin to help the blood pass through with less work. We will continue to check her INR's at home as we were already doing even though this new mitral valve does not require it. Her pulmonary hypertension (lung damage) will be treated with sildenofil again. Nothing we are not familiar with.

The rest is nothing! We can handle this. We have a strong girl. She has proven that too many times to mention and we are thrilled to be bringing home a little girl who will now be able to grow and play and thrive!!! How awesome is that?

Once we move to the regular floor it will just be a matter of keeping Ivy's INR therapeutic and getting that discharge echo! We will stay locally for a few days, see her cardiologist as an outpatient for one last visit and then we get the thumbs up to GO HOME!!!!!

I don't know what that means time wise. Tomorrows x-ray is kind of the author of that story.... But my guess is 2 weeks or less?? 

Sounds like forever, but honestly this has been Ivy's smoothest recovery ever. She looks more and more like Ivy every day. Still far from the Ivy she will be when healed, but getting there. She is fighting sleep instead of asking to go to sleep (a huge good sign), her face is filling in, her liver is a little bit smaller already, she is smiling and laughing a little bit but still very on gaurd when people are around. When the doctors do rounds she gets very stoic. She loves 2 of her nurses like no others! Ali and Jen. She asks for Jen when she is not working and tonight she cried a river when I told her Jen wasn't coming. Last night they bonded over Dora until 1am so they are now besties haha. Every nurse here is sensational! Yesterdays nurse is mommy to 2 Chinese girls like us! It was magical having her with us all day and knowing that we shared something so special. (I can't remember who on here mentioned knowing this nurse but if your reading this... She is a gem!!)

And if you are the sister in law of a male nurse here at Children's and you live in Texas... first off, thank you for sending your love and prayers and second, your brother in law is adorable and so kind. We have not had him as our nurse yet but it was so sweet of him to stop in and tell us about you and check in on Ivy! 

Thats all folks! I need sleep! Goon night