I am such a bad blogger. If there was an award for the worst blogger, I am sure I would get it. I fully intended to continue to update and post to the blog regularly when we got home with the boys, but I have failed. So, for that I am sorry, but I am going to at least make one post a week (if not more).
Many of you have e-mailed me asking about Mylee so I thought I would update you all on her progress with the tissue expansions. First off, when they first inserted the expanders I was told that they were extremely painful and that she would have to sedated for every procedure. I didn't like that she was going to have to be put to sleep every week, but I also didn't want her to be in any pain. The first tissue expansion didn't go as planned. We arrived at the operating room at our scheduled time, but the doctor was stuck in surgery which was pushing everything back. Because I had asked earlier why she needed to be put to sleep, the OR nurses came out to explain it all to me and then asked if I thought she could do it without being put to sleep (this is all going on while Mylee is saying she does NOT want to go to sleep). I told them that as long as they told her what they were going to do, she would probably be fine with it. With the okay from the Dr. the nurses got everything set up to do the expansion without sedation.
They did put some numbing cream on the spot where the port was so she wouldn't feel the needle. Dr. Havlik came in and explained that if she did not cooperate, they would have to go ahead and put her to sleep. By this point, we were already 2 hours passes our scheduled procedure so I didn't really care what they did as long as it got done, and she could eat (because we thought she was going to be sedated, she was not allowed to eat or drink).
Let me just say, that Mylee is probably one of the strongest little girls I know. She laid there the entire time they were doing the expansion and sang. Yep, she was singing while they were doing a procedure that we were told has grown men crying. The doctor, residents, and nurses were completely in awe that she did it. I don't think they honestly thought they were going to be able to do it without sedation.
So, the doctor said that as long as she was this good, he could do them all without sedation. So, once a week we go to Indianapolis to have the expander in her leg expanded with saline water. When we get in the car I apply the numbing cream to her leg so she doesn't feel the needle, and other than that, she has been doing really well up until last week. Let me say that she sits there the entire time watching and asking questions about what they are doing. Last week one of the residents was trying to talk to her to distract her from what was going on, but she was completely ignoring her so she could focus on what the doctor was doing.
Last week was a little different than the previous weeks. She did great for the procedure, but about 30 minutes after she is in extreme pain. I'm talking screaming, thrashing, sweating, eyes rolling back pain. They gave her Tylenol 3 for pain and it was obviously NOT working so I pulled over, called the doctor and asked what I should do because she was in so much pain that she had already thrown up on me twice and we still had a 2 hour drive back home. They said to just give her another dose of the pain medication and if that didn't calm her down in a bit they could order something else. So, I gave her more medicine, and off we went for home. Luckily, she fell asleep and by the time she woke up we were almost home and she was feeling much better.
This week was much worse than last week and she had Vicodin for pain. I have never seen any child in so much pain. She was screaming, yelling, crying, etc. It. Is. Awful. But what makes it even worse is when she looks at you with huge tears in here eyes and says "mommy, please, please help me, it hurts so bad." That's when I got off the highway as quickly as I could, pulled into a McD's parking lot and sat there for almost an hour holding her.
She finally calmed down a bit after that and tried to sleep but would continue to wake up from the pain. She was in pretty good spirits by the time we got home and was excited to show everyone her Halloween bucket from McD's. I have her some more pain meds before bed and she even woke up about 3 this morning in pain so she got more. She usually goes to school on Tuesday afternoons, but did not today because she still can't walk on her left leg.
She is scheduled for surgery with the Orthopedic doctor on November 2, but the plastic surgeon thinks he is going to have to continue the expansions beyond that date. He said he is afraid there will not be enough skin for the ortho by next week. Apparently, the longer these go on and the larger her leg gets the more painful they get. So, I will be calling them to see what our options are for pain because it literally tears me up to see her in so much pain. We are scheduled again for next Monday so please keep her in your prayers because I have a feeling it is going to be a repeat of yesterday.
This is what her leg looks like now. I honestly cannot imagine it getting much bigger. Her skin is so shiny where the expander is yet it is also cracking and very dry. Mylee is such an amazing little girl. I know I have said that before, but I cannot imagine going through all the stuff she has in her 4 years. From what I understand as the skin is stretching it feels like it is on fire and very painful.