So Saturday...day three after surgery. After C had been stable the day before and overnight, I was really hoping I would see more of an improvement when I came back to the hospital. Kevin had reported she did well overnight and he even got to hold her briefly while the nurses changed out her bed and weighed her. Can I just express how jealous I was! I have not snuggled with my sweet girl since early Tuesday afternoon and I miss her.
Anyway, I was hoping to see more response from C when I saw her Saturday morning. Boy was I disappointed when I got there and she barely looked at me. I am not sure if she is just stil really out of it or just really pissed at me. Either way, it sucks. I know she is tired, weak and still just beat down from her whole ordeal after surgery and then the return of the arrhythmia but I thought I would at least get a mama. This is just killing me to see her in such misery that she is limp, lethargic and barely even responds to me.
We spent the whole day listening to her favorite music through the Jambox speaker, reading her favorite books, playing her favorite games on the tablet and watching her favorite movies on the apple tv (for anyone who knows my husband you know he has her hospital room all decked out with all the gadgets....um, yeah). I kept waiting to see any response from her while I read with her or danced and sang the silly songs...but nothing. Kyle and Todd even came by for another visit before heading home and she did not even really respond to them. Let me just tell you, by the time I left the hospital last night I was in tears. I am so terrified I will not get to bring my little girl home. I prayed and begged to just let me have her pain, take me instead, anything so she didi not have to suffer anymore. The stress is just kiling me and we are not even half way through this hospital stay. We are still around step one with like 10 more to go. I hate waking up each morning with dread and a huge knot in my stomach feeling like I am going to vomit. Due to Kevin staying with C at night I am able to get sleep so that does help but I just feel like as soon as my eyes open this whole nightmare is starting all over again. I hate seeing my boys leave to go home knowing that I will not see them for another week. I hate that my younger son is just as stressed by this. Todd has called, all on his own,at least 6 times to see how C is doing and asks Pappi and I how we are doing. He did not want to leave me yesterday and called soon after saying he is scared. I hate the C has had to suffer so much and is traumatized yet again. I hate that these rhythm issues continue to hang around and severely compromise C's ability to make it through surgery, make it through recovery and severely shortening her already short life expectancy. I hate that she had to be on the super, heavy duty anti-arrhythmia drug again which has horrible side effects the longer you use it. I hate that I am always going to panic about C getting sick and will probably freak out each time she is around other kids, if I let her around other kids at all. I hate that everytime she is in a deep sleep and is startled she wakes up terrified, pupils huge and shaking uncontrollably...it scares the crap out of me. I think we are both suffering from PTSD, not something I am making light of at all. Todd pretended he was scooping C up out of bed and sneaking her out of the hospital...I was right there with him. All of this just sucks, sucks, sucks.
C continues to have lower oxygen sats but they are still holding steady in low 80's to high 70's. Not horrible but not great. Her heart is still being externally paced at a rate of 135 with the hope that the pacing is giving the meds time to work to control the arrhythmia. She also is still really swollen and holding around 6 pounds, yes pounds, of fluid in her body. She is not allowed to have food, juice or even water in her stomach making it 5 days since she has had any real food. The only real positive yesterday, aside from the visit from Kyle and Todd, was that she had her foley cath removed, one of her 3 chest tubes going to her lungs removed and that her left lung is looking more and more clear each day.
And as much as I know I am over this, I know C is even more so. I really hope things start turning around. C deserves so much better than this.