Just another Manic Monday...

Today was another one of those that pulls at your heartstrings. This morning started out wonderful. Trevor and I got a great night sleep. The nurses kept very quiet all night and took great care of our little girl. When we wondered over to Peyton's bedside the nurses had done her hair up in pigtails. She almost looked like what we remember her to be. It was a very pleasant surprise. The rest of the morning continued with the staff's "morning huddles" as Trevor calls them. We were told her labs were still up and down. She was a tad anemic but her LDH count (the big number) was down to 630!!!! Great news so we were happy about that. She also still had some fluid in her lungs but it was looking a little better. At this point we were thinking pretty positive. Her night had gone really well, her vitals stayed stable and the morning was even bringing better news. Next on her schedule for the morning was her hemodialysis. From the start Peyton wasn't reacting as she normally does. Usually they are able to pull fluids from her right away but this time she wasn't going to give any up. Her blood pressure started to plummet and her pulse was rising fast. They attributed this partially because she was anemic. They ended up pulling her off the dialysis before it was complete because her vitals were becoming unstable. From that point on it seems like the day just couldn't go right. She is currently on a pain medication for her breathing tube, one to prevent seizures, one to keep her sedated, and one to help prevent infection. While she was on dialysis it pulled some of these from her blood, which made her wake up a little. This made things a little difficult. And now they needed to start her on the plasmapheresis. This procedure naturally drops blood pressure so they had to add another medication to her mix to raise her pressure for the procedure. During all this she also had another episode they think might have been a minor seizure because of the way her eyes rolled to one side. At this time Trevor and I were very anxious. Her vitals were unstable, she was going through a risky procedure, and there were way to many people in the room. One of the reasons I hate teaching hospitals. After a somewhat heated conversation with the doctor, those that weren’t needed left. I understand students need to learn from experience but when my daughter is stressed and not in a stable condition, the last thing I want is attention to be on teaching on not 100% on my little girl. After the plasmapheresis things started to calm down. We had a meeting with the neurosurgeon who was happy with Peyton’s exam (reflexes, eye reaction, etc.). He informed us again that the MRI and MRA showed no bleeding or swelling however he could see that the lower part of her brain did show some agitation which coincides with H.U.S. because the disease can effect the brain and belly. At this point they are not concerned but will be monitoring her for changes. We got some news on her ECOLI culture as well. Her original culture taken when she arrived was positive for ECOLI type 2, which is the less aggressive bacteria…I couldn’t imagine this process actually being worse with type 1. The rest of the day was up and down with her vitals again. Her temperature has been relatively stable except in the past hour she is starting to get another fever. They still don’t know where this is coming from. It could be from the seizure or an infection. The best news we got today was that she is starting to urinate again. Earlier today she was acting extremely uncomfortable and was starting to cry when we noticed her lower belly was a little swollen. Peyton cant talk with the tube in her mouth so she couldn’t tell us she had to go to the bathroom and the sedatives make it hard for her to pee on her own. We had taken the catheter out earlier because of the risk of infection from her diarrhea so we were relying on her diaper to tell us if she was urinating or not and there hadn’t been any. We inserted a catheter and got almost 350 ml of fluid from her. That is almost 1.5 cups of urine sitting in her bladder… ugh I couldn’t imagine how painful that had to have been. Tonight has been pretty quiet except for her rising temp and unstable vitals. I hope she will become more stable tonight and we can have a better and more successful day tomorrow.

Today was pretty hard. It was difficult for us to see Peyton in pain. The ventilator is really uncomfortable for her and we will hopefully wean her from it tomorrow. We tried today but because of the fluid in her lungs she breathes faster than normal and with everything else happening at that time it was to stressful on her body to try. Its so hard to be positive in this situation. Every time we get good news its followed by bad news, every time she stable its not long until she is unstable again. We are hoping for 24 hours of good news for tomorrow. We have read and been told children with H.U.S are in the hospital for at least 2 weeks so we still have hope we may be home for the weekend with Peyton by our side running for our front door.