Hello, The last few days have been extremely rough and I thought I would take a breath while Craig and Grace are at church and give you an update. Thurs Sophie had her bandages changed at the Drs. He showed me what to do should any of the other areas get "gunky" and need redressing and she seemed surprisingly fine. In fact on Thur I stretched her tylenol doses out because she seemed ok. Then at 2 am she woke up screaming and nothing would console her, we would get her back to sleep and she would wake 20 min later screaming for the rest of the night. Obviously Tylenol was not working. So in the morning Craig trudged bleary-eyed off to work thankful that at least it was Friday and I guzzled coffee and faced the day with a hyper 3 year old and a miserable baby. First item on the agenda, change the bandages. Now Sophie had her tylenol and then nursed so we're talking 45 min into her tylenol I attempted to change her bandages and the tylenol should have been at its optimum. She screamed and I soldiered on. Grace is actually a fairly good assistant and I felt like some old rerun of MASH (because it obviously was not a proper setting like ER) calling out "gauze", "scissors", etc. and she hands things to me all the while singing a song to Sophie. Well it turned out more of the bandages were coming off and she was soaked from the drainage off her wounds. So I removed more of the original and redressed all the wounds. You sort of have to tune out her screaming and keep your head in the zone (I imagine that is how athletes stay focused with millions of screaming fans) but I knew that if I got all flustered by her screaming it would only take me longer. Well I thought that once she was all bandaged and in clean clothes she would finally calm down, I mean after all the tylenol ought to be working by now. No, it was awful, she would cry and you pick her up and it escalates to blood curdling screams. She was obviously in bad pain everywhere. I called the doctor and they said to switch to Tylenol with Codeine. I had some from her first surgery so, no problem.
After that she slept A LOT but when she woke up at 4 pm she was fireball hot. We got a temp of 103, we were on the phone a lot with both the surgeon and the pediatrician. By Sat morn her temp had come down to 99.3 but Craig still wanted to take her to the pediatricians and sure enough he said one of her ears was really red so now she is on antibiotics too. When we had switched to the Tylenol with Codeine the surgeon said to keep it up every 4 hrs until we see him on Mon.
Since Fri she has been so different. When she first wakes up she is in a lot of pain again and I give her the Tylenol first thing. Then she eats, which is not very much. Then she goes upright on my shoulder and I hope for a burp naturally because there is literally no where to pat! Then I set her down somewhere comfortable, her bouncy seat, swing, pillow and she lays there and moans and whimpers or stares with a blank expressionless look on her face. I haven't seen her smile or talk in three days and that is something she usually does all day long. Its like my baby is gone. And her cry has changed, last night as Craig and I redressed all the wounds she cried the entire time but it was like a defeated cry. Like she knew we weren't going to help her because we are the ones doing it to her. And Craig and I had a talk last night because I was sobbing and I didn't understand why he shows no emotion what-so-ever. Being male he wants to fix it and if he can't he wants to ignore it or at least down play it as much as possible. I told him if he said "she'll be fine", "we're doing the right thing", or "she won't remember any of this" again I might scream. Poor guy hides all his emotions, he said that when he watches me change her dressing and sees the blood he wants to run away or get sick and he is proud of the way that I am able to do it. So it has been tough, her fever finally broke late last night and I am hoping each day she gets better, less pain. I just want my Sophie back. Literally since the week she was born she beams whenever she sees my face and mouthes the word hi, and it is so sad to have her stare at me with cold eyes like she doesn't even see me, it breaks my heart. I am hoping it is just the drugs and not that we have crushed her spirit.
Despite all this sad tale (because I need to use this blog for my own emotional cleansing as a very public version of a diary) I did want to end with a couple of remarkably touching stories that happened right in the midst of all this turmoil. Craig went to get some rolled gauze to wrap around her to keep the dressings on without having to use tape on Fri night and the pharmacist asked what it was for (he was visiting from a different store so Craig had not seen him before) and when he explained the nevus and her surgery he said "I am a Christian and I would like to pray with you" and took Craigs hands right there over the counter with people milling about shopping and prayed for my baby to be healed! Also on Fri which was the start of her decline, I got a package in the mail and it was a quilt signed with love and prayers from a group of people from a church in Arkansas. I guess one of the ladies knows my Aunt and her church group (this stranger not my Aunts) made the quilt praying for Sophie as they made it and then prayed over it before they sent it out. So she has been sleeping under it since Fri afternoon and most literally been covered in prayer. It reminds me once again how Great God is! And what a blessing to be part of his family! I was telling a dear friend in an email the other day that sometimes I feel so bad that she didn't choose this and as the only option for treatment for this condition she was born with we her parents had to choose it for her, but then I think of God the Father and what he had to put his son through, and I know he understands! I laid in bed last night almost wishing for pain in my body somewhere to take away some of the pain in my heart but mostly to take away the pain on my baby. I burned my finger last week, it was just a first degree burn from steam but it hurt so badly and I feel sick thinking of her feeling that all over her body and I think what on earth possessed us to do this? We were more optimistic that the bandages would stay on and she would have had very little pain like last time but because he did such big areas they just wouldn't stick. They are supposed to be mostly healed in 10 days. Thats just 5 more days from now. I pray that pain gets less and less each of those days and my long lost Sophie comes back to me. I know God is good and he is caring for us all through this time. Please join me in prayer for my baby! A Brokenhearted Momma
