Not the way I wish I had time to write

Well it has been quite a struggle since we came home from the hospital almost a year ago to find the time to write anything in any length besides a long to do list. But unfortunately I have found time to write. This last Tuesday Faith woke up fussy which is REALLY not her, so I vented her and she fell back to sleep. I chalked it up to gas and got on with the morning of getting the kids ready for school loaded and out the door. Well on our way home she started to gag and puke, and of course when I'm being followed by someone on my tale. After that she seemed ok and happy but things drastically changed. I went to go clean out her feed bag and mix up her meds, and she began to scream and from that point on she didn't stop. Even in her sleep she still whined and then the fever started. It hit so fast and so hard so I called the pediatrician to ask him first and he said it was probably the flu bug going around, which I hoped, but felt like it was more. And more it was. Once I got her connected to her cycler she began to drain and that's when I saw it first hand. Peritonitis fluid, or pretty positive it was. There was white fibrin looking worms all over her fluid so I rush a fluid sample down to Centralia hospital and waited as patiently as possible. Didn't at all help that the night previous the nurse called in last minute and got no sleep, so was desperately needing a nights rest after the crazy day and night, but that didn't happen. About 2 hours later I got the call that white cells were in her fluid so I would need to start the antibiotics I had on hand for this exact reason. Now at that point I thought she had screamed but was nothing like the way she screamed when I put in the loading dose of meds. It was all I could do not to cry seeing her in so much pain. After that 3 hours later I loaded all her cycler bags with different dosing of the same meds and started her on the cycler. The next two days were exhausting to say the least and didn't seem to make much improvement but not any worse. Friday afternoon, after of course I called asking why I hadn't heard what the other results were yet, I got a call back. "Come to the hospital now, she will most likely need emergency surgery"....I sat there in disbelief and then lost it. I could barely see through the tears or even hold myself up trying to pack for weeks or who knew how long. I felt so defeated I had been trying so hard to keep her healthy, I felt like I had failed. Basically what I was told is that she had yeast in her fluid, which is BAD! Dan and I drove up in silence and taking turns breaking down, and then I was numb. It was like I was outside my own body, in a terrible nightmare, back at a place I never wanted to be again until transplant. But we were here and having to hold ourselves strong and together while doctors filtered in and out not really doing anything to comfort her as she screamed, and cried burning up with a fever. Things finally got sorted out and Tylenol was given and she started to fall asleep and was told besides them starting an anti fungal medicine they would not know the plan till morning. So again hurry up and wait. That was a start to a night that I wouldn't wish upon anyone. I tried sleeping on a small little couch with Dan but she started to cry the moment I thought I may be able to go to sleep. As she cried, she started to scream, as she started to scream she started to shake, and I tried everything to calm her down, stop her shaking, and not break myself. She hadn’t ate in hours which is not ever what happens but we didn't pack formula. The next morning after hours of waiting and hoping for good news the doctors came in with the news, bad news. They began to say that there was no choice and the catheter would need to be removed. The hope was to place the hemo catheter at the same time but that probably was not going to be the case because of the infection and chance of it causing infection in a direct blood line. Then they began to tell us how long we would have to be in the hospital and how long she may have to do hemodialysis because her peritoneal cavity may be to scarred from infection to use again. Again not what I wanted to hear or what I even expected. Being hit with that blow and not expecting half of what they said, I broke down. I felt bad for the doctors because they didn't know what to say and I did try my hardest to hold it together but thinking of how long I would be away from home again and missing all the events I was planning on attending made me break. As the day went on we heard that they would have to do two different surgeries, which then turned into three and no idea how long we would have to say in hospital, but for sure would have to do at least 5 days a week of hemo dialysis at the hospital. Well all fine and dandy if we didn’t live 2 hours away. So now it is the juggling act on what we do, how long it will be, what will we miss and what will we have to do to sort it all out. I hate this place because it is so far from home and brings no good feelings at all, but the nursing staff is one of the most amazing group of people. In a time like this they do an amazing job to do what they can for you, and for that we are so very grateful. So we now sit and wait to hear what the next step will be, when it will be and what to expect. So hurry up and wait and put on your bungee cord because we are going jumping again.