Well, here we are. One week out from surgery and C is still struggling to get back to herself. 7 full days after surgery.
This Fontan surgery was not suppossed to be this difficult. Coming into this surgery, we already knew about the things that would be a challenge. We knew she could develop pleural effusions, fluid around the lungs, keeping us here while the fluid drained. We knew her body would have a harder time adapting to her new psyiology, new circulation. We knew all the same risks and complications from the previous two surgeries. Even knowing what we did, I was not prepared to see C, 7 days later, still struggling. She was such a super, rockstar the first two surgeries. She sailed right through those with minimal, to no complications. Our roughest patch to date was when she went into arrhythmia 8 days post op after her second surgery. Even with that, she sailed through that actual surgery and was her sweet, smiley self by day 3.
Now here we are, after surgery, and C is the sickest she has ever been. The most ironic thing, she was super sick before her previous two surgeries and she rocked them, coming out better than before. This time she was super strong and the healthiest she has ever been. She was in the perfect place before going in. And, now I am living my very worst nightmare. As I was finally coming to terms with the fact I would indeed have a child with an unfixable broken heart, I realized there really were many things I felt I could handle. The one thing I never, ever wanted is for C to suffer or die in the hospital. I have always wanted a much more comfortable ending for her, surrounded by love and softness during such a harsh time. These are things you will never get in a hospital. Instead you will get medical personnel, people with pity faces and curious parents in the icu for other kids who can't help but look but are secretly thanking God that your child and not their child just became a statistic.
Have I mentioned how much I really hate being in the hospital. I am eternally grateful for such a fabulous institution and the incredibly selfless people who work to help save kids like mine, but I hate the hospital.
So 7 days later, C is still in the hospital. Tonight makes the 10th night I have been away from my home and my family has been seperated. 10 nights of extreme stress and worry. 10 nights of not sleeping in my own bed. 10 nights of being away from boys and C seperated from her brothers. And as of now, I have no idea when the end will be. All Inpray for is that we do inded get to leave with C and the C we had before this awful nightmare began.
Now for the positive news of the day. The EP cardiologist came by again this morning and he told us C is finally back in sinus rhythm (normal rhythm). She no longer needs to be paced to break the super fast a tach she was in. He even was able to discontinue one of her three meds sne is on for the arrhythmia. Yesterday he had made that med a half dose and today, gone. He is still monitoring to figure out which medication and how much of it C wil need to keep her in sinus rhythm. Regular cardiologist told us her left lung continues to clear and look better each day. Her heart function is looking good and he will consider weaning her off the iv med she is getting right now to help function. He was a little concerned with her bloodwork today and becaus she is heterotaxy and aspleenic he had cultures run again and put her back on the high powered antibiotics. At this point, I am not arguing. The very last thing she needs is to get sick. Heartvwise, C is heading in the right direction.
We saw the neurologist again this morning. Still trying to get a feel forvthis whole brain thing and how the doctor is. I was not completely sure I understood what he was saying other than 1) yelling at us for blocking the camera too much, 2) yelling at us when we asked why she seemed so unresponsive to us and he got in there and really woke her up and 3) that he does not think she is having tecnical seizures. He told us what he is seeing loks more like vascular restriction when she is upset thus preventing oxygen from getting to all areas of her brain. At first he was going to add a seative on top of the seizure medication but after we asked him to come back in and have him chastise us some more, he did monitor her a bit while on the eeg and decided the sedation was not necessary. However, C was reconnected to the eeg machine for another 24 hours and he ordered a ct angiogram for her to check brain vasculature tomorrow. Hoping we have more answers tomorrow because everyone seems confused including the neuro doctor.
We really only had one big, bad set back today and that was involving C's line. Poor kid just cannot get a break. She is so super hard to get a line into and she is still on iv meds that absolutely have to go through a stable line like a central line. And wouldn't you know that not only did she lose her very last peripheral iv in her hand, she also lost one of her trans thoraic lines. Of course she had to lose one of the stable central lines and of course one of the meds she is on for the arryhthmia cannot be mixed with other drugs and of course she still is showing depeltions in areas that need to be replenished like potassium and of course she is still on heavy diurectics....grrrr. So she had to have a pic line placed. Seriously. Right now when she totally freaks out and her body shuts down and she has some weird seizure like episode when anyone touches her. Ugh. But, she did well and they got the pic line placed. Much better alternative than having the intensivist place another central line in her neck. So all is good. Then they come back to mess with her because the xray showed the pic line was flipped the wrong way. After doing their stuff, xray had to come back. By then C was just done again and she prety much went to sleep after that.
However, after the pic line was placed and before the pic team came back, I got too see my C again. She was wide awake when we came back after the pic was placed and she said mama, twice. Joy. Then we played games on the tablet for quite awhile and we played with the minnie mouse balloon I got her. And the best thing of all....she laughed. She was laughing with me. I just so overjoyed to see me C is still in there. After seeing her all day yesterday in a catatonic state, I cannot even describe how incredible it was to see my sweet angel laugh with me while doing silly stuff.
I am really hoping C is finally turning the corner to recovery. Although she is not back on food yet, stopped yesterday after the first seizure/episode, we were able to give her juice through her tube. Taking it very slow right now as everything seems to upset her. Getting more meds through gtube instead of through iv, always a step in the right direction. She was dialed down on her other iv arryhthmia med and they may turn tne pacer off tomorrow which means she is closer to getting her pace wires out. We are getting there, I may be starting to see a light at the end of this tunnel. Hoping tomorrow brings more improvement and no further set back