Sunday started out well. Very well in fact. C was actually starting to show signs of her old self and I was just so happy to see her feeling better. She was awake and alert when I got to the hospital. She was pointing at stuff and saying a few words. She was showing some enthusiasm for the things around her. We spoke with the doctors on rounds and we were going to start putting stuff in her belly. The NP asked about her diet and I again got the comments about what a weird and crazy diet she is on and how in the world did I come up with it. I always give credit to the amazing heart mom, with the truly miraculous child, who was kind enough to email me back and share her knowledge and information. Even with all the comments about how weird it is, everyone agrees and admits that she looks great and is a great size. So there.
Anyway, we were not given the go ahead to put her right back on that diet but we did start back with her juice/Gatorade. If she would tolerate that in her tummy then we could give her some baby food. She did well both times I gave her fluid so I gave her some pears and she did fine. Because she has been so very, very, very sick and her body and taken such a huge hit, food needs to come very slowly. Her tummy and bowels (or more technically, her guts, and yes that is how all the doctors and nurses refer to them) need time to adjust or we risk killing her with a preforated bowel. Awesome. So, baby food pears it is. At this point I don't care what it is as long as she can have some food. I would be seriously weak without having any food and we certainly were not going to try the Pediasure through the feeding pump again...huge failure...which we told them it would be since she has never tolerated Pediasure or pump feeds. She did do well enough when I gave her pears so she was able to have more later that night. Of course the lactate (indicator of acid build up in her body) jumped a little so everyone gets a little nervous around here when that happens. I was really hoping they would not stop the food again. So far they have not so that is good. Even better, she pooped last night and she had pears this morning and herlactate came down again. All positive signs.
She did lose one more line yesterday. Since she was going back to having stuff in her tummy she could go back on aspirin which means she could stop the heparin drip. Since we did not need the heparin she finally had her central line in her neck removed. Whew. So happy to get rid of that one. C is much more comfotable now as well. She turns her head left and right. In addition the fewer lines you have in your body, the fewer places there are for an infection to brew. The very last thing we need right now is for C to get sick.
Her left lung continues to clear up and her echos continue to show good function. She is still being externally paced at a rate of 135which is a tad higher than normal but seems to be holding steady. She is also still retaining lots of fluid so she is on two diurectics to help her dump all the extra stuff. With all the extra fluid her lung chest tubes continue to drain as well.
Now the really bad part. C is refusing to fall asleep. And then when she finally does, something has to happen, she gets startled awake and wakes up terrified. I mean, completely terrified. She shakes and jerks like she is having a seizure. We know she is not seizing because when we hold her hand and get right up in her face, she calms down. However, the poor child has not had any real sleep in probably 36 hours. She is absolutely sleep deprived. I hate seeing her like this. And due to lack of sleep, she is completely zoned out. By the end of the day, she was back to looking like the C from Saturday, unresponsive, not alert, foggy and groggy. She was settled, relatively, when I left last night but Kevin reported that she had a terrible night. She never did go back to sleep from earlier when the nurse came in and woke her up completely when she could not get the med pumps right and turned on the lights and all of her pumps started beeping. Then she finally had a chance to rest between 11pm and Midnight and the cleaning lady came in to get the trash right at 11:30pm. Then blood draw for gas check at midnight. Kevin finally put a movie on an let C watch that while he got a couple hours of sleep.
Then the very worst part of the whole night/morning was when the nurse changed the battery in the external pacer and apparently put the batteryin backwards and the pacer shut off. Um, yeah. The doctor went ahead and switched the pacer out just to make sure we had a pacer that was not malfunctioning but Kevin says the nurse put the battery in wrong. So C showed an arrhythmia run the morning up to 170. Awesome. Making a mistake with the pacer is not exactly something that makes me happy.
And speaking of issues to take to management. Yesterday, C had to be moved from the Cardiac ICU to the PICU because she was the only one in the unit. Management decided that the unit must be shut because they must have 2 nurses when the unit is open and they cannot have 2 nurses for just one patient. So, despite the fact that my daughter, who falls under pediatric last time I checked, had major open heart surgery five days ago, almost died during recovery and still requires a lot ofsupport and is you know, a cardiac patient, according to management policy she will be just fine to be moved and placed outside the cardiac icu. Again, um, yeah. Awesome. So we got all our stuff and moved literally 200 feet down the hall (the pcicu and picu connect here) so the pcicu could be closed. C freaked out. She seriuosly thought she was going back to a bad place. She started crying, her blood pressure skyrocketed and it took hours for her to settle down. Again traumatizing my already traumatized daughter and keeping her from the rest she so desperately needs to recover. I really hope the hospital saved a bunch of money with that decision. If not I am sure the $300,000 bill they will send me will cover it. Oh, the best part is she can be moved back to the pcicu tomorrow more than likely because they know they have kids on the schedule who will be coming up to pcicu. So frustrating. I would not move her again if the opportunity arises except for the issue that picu rooms are not really set up to accomidate heart kids. So freaking frustrating.
we will see what tomorrow brings.