Lily was up a lot of the night watching movies with her dad. When I came in at 6:30 Justin said he had finally just gotten to sleep (sorry babe) Justin likes to stay the night with her because he says its when he can be her hero, so sweet.
Lily had a tough start to the day. They needed to drain chest tubes and do another once over checking lines and flushing IV's. these tasks do not hurt but just knowing they are touching things around her she sometimes gets very upset. Lily was trying to ignore them by sleeping I think that she thinks if she is sleeping they won't do anything. The nurse touched her arm and lily yells out in a mad tone "hey I'm trying to sleep and the dr is touching my arm" I find these comments so cute and entertaining they make me laugh because it is just her being her sassy self.
Once that was done they told me they were going to need to get a weight, do a chest x-ray and an ECG (my thought was this is going to be beyond brutal). Chest x ray was first and there wasn't too much crying. they could do it bedside so she didn't have to move around a lot. For the weight they had to lift her out of bed and sit her on a scale which she doesn't like on good days, never mind a day and a half after heart surgery and having multiple tubes and IV's coming out of her and the pain from her Sternum. She was pretty upset at this point and just wanted a warm blanket and to get to sleep,which she did until the ECG people came.
When The ECG techs arrived I said good luck jokingly. We haven't been able to get an ECG unsedated on Lily in a over a year. They tried to get the stickers on while she slept but that didn't happen. She was really upset now, I got Cinderella on to try and distract her, which worked to some extent. The stickers they use have a really sticky gooey adhesive which pulls a lot at her skin. They try to use alcohol swabs to take them off more gently however, this prolongs the process and bothers her just as much or more so I told them to just rip them off like band aids. Lily being the sweetie that she is then repeatedly thanks them, and away they go.
I did Lily's "treasure life" bead story today. They have a program in hospital where kids can collect beads for every procedure they go through. I never started it when she was a baby, but I wanted to have her start it this time. I did the short and sweet version, as it would have been impossible for me to remember exactly how many Times she got IV's, X-rays, blood work, echos, ECGs etc..the OCD part of me wants it to be exact but that just isn't going to happen. It brought a smile to her face when I brought them to her :)
Lily had to get a poke today, and was able to pick a prize from the treasure chest. She picked hair baubles, she's such a girly girl! Afterwards we put them in nu-nu and Rapunzels hair haha she loved it.
Lily's JP tubes have been draining a lot more fluid than normal. One of our biggest concerns after this surgery is getting chylothorax again. This was the complication she got after her last surgery. It is the most common post op complication with the "fontan" (that's the name of the procedure she had). And she is at a higher risk of getting it b/c she had it before. They did labs on the fluid last night and will do it again tomorrow. Yesterday's labs came back with one marker of it bit that doesn't confirm it. As the day progressed the fluid in her one drain was looking cloudy...another sign. They are closely monitoring her for it and if she has it they can hopefully treat her with just a low fat diet vs the extreme she had last time of no food by mouth for 2 weeks and NG tube feelings for 6 weeks of no fat formula. (Which would be the same treatment this time if diet doesn't work).
We are praying that if she has it, it's just mild so we don't have a prolonged stay in the hospital.
No comments:
Post a Comment