Fake erased

If you are a Seinfeld fan you will remember the episode where Elaine goes to the doctor and peeks in her chart while she's waiting. She reads a comment from a doctor on a prior visit that says she was "difficult." She mentions it to him, and he acts like he erases it and moves on. She says, "But it was in pen."

Like real relationships in real life doctors say things out loud they can't "fake erase" later." This is what happened this week with the orthopedic surgeon in Cincinnati. Tuesday I heard first from Dr. Crone's office, the neurosurgeon, that Dr. Crone called Dr. Crawford. He questioned him about his change of heart and reminded him how strongly he believes Danica needs this surgery now. He asked him why he was stepping back from participating. Dr. Crawford told him it was because he felt like "the father" (Dan) was not completely on board with the surgery or trusting in him as a surgeon. I was flabbergasted.

If I could transport you back to the appointment we had with Dr. Crawford you would see a family of four who had driven hours through the heat and then sat for almost two more hours waiting for our appointment. The kids were literally climbing the walls. Like usual I was driving the conversation bus most of the time because I have been the primary caregiver and the one who has been doing this for a year and a half now. Dan was trying to watch the girls, particularly Danica who can get hurt or fall so easily. Dan doesn't come across warm and fuzzy to most people on first meeting anyways much less a man under these circumstances who began the conversation with a comment about not needing our business. I KNEW what he meant--that he would not recommend such a risky surgery just to make money--he felt like Danica needed this surgery. As a protective daddy with so many questions and reservations of his own Dan felt this was a very insensitive way for a surgeon to start off. There was no real verbal conflict between them, but everyone could sense tension. Still, when we left there both Dan and I felt Dr. Crawford had made our minds up that we needed to be brave enough to do this to keep Danica safe and give her the best chance. So, very long story shortened maybe just a little, Dr. Crone convinced Dr. Crawford to step back on board. I still do not know for sure if his feelings about Dan were the true reason for his "pulling" out almost two weeks after our visit, especially after having multiple conversations looking for dates for the pre-surgery scans and discussing actual surgery dates. Something doesn't totally ring true there. At this point we can't just "erase" this from our minds and hearts and move forward.

Again, it seems God is asking us to step on the brakes a little. Of course, I called Dr. Menezes' office late last week and spoke at length with Lonny about Danica's symptoms and what is happening. She promised I would hear back from them early this week. Again, I have not. I turned to our dear Dr. Cohen in Cleveland, and he called me back within several hours. His concern for Danica from day one and involvement in her case is remarkable to me. We went ahead and scheduled Danica's flexion-extension MRIs in Cincinnati on August 10th and a new appointment with Dr. Crawford and Crone before surgery. They are back to looking for a date. In the flurry of conversations I felt like I needed to at least keep moving forward with these important scans and possible reconciliation with Dr. Crawford. Dr. Cohen agreed we keep these doors open but suggested when his assistant Helen is back from her vacation on Monday we could try to schedule the scans there in Cleveland earlier. He would like us to meet with their head pediatric orthopedic surgeon, George Thompson. If we can do this prior to our planned Cincinnati trip we may have more clarity. He reiterated to me that no one, not even Dr. Menezes, has seen a case just like this. There is no definitive answers. The hesitation we are feeling from everyone is because no surgeon can dip into their experience and tell us what the right decision is or even how this surgery will really go. They don't really know what complications could arise immediately following or down the road. There's no success rate data to go to here. But, Danica needs some kind of surgical intervention to protect her, and we can't decompress again without fusion.

If for no other reason I believe God is slowing things down a little, because I am really not well. I had some blood work last week, and it came back with lots of highs and lows. The results are shouting to me the fact my body is breaking down from all this stress. Somehow I have to put on my own air mask before this plane goes down, and I am no longer able to help Danica and my family survive. I don't really have a plan to make things better, but I know I have to find a way to change something.

I had to take Danica back to the pediatrician tonight. Her fever spiked again today. Her behavior has been erratic the past two days. She seemed to improve on Saturday and Sunday but began having lots of spasticity Monday and had a fall yesterday and really bumped her head. She has also been acting out--almost like a mild paradoxical reaction to the Omnicef she was on. Some of you know Danica has had bad drug reactions in the past. They have not always been with the first dose but after they build in her system. Her right ear is now infected in addition to the left one. The doctor switched her to Augmentin. I can only imagine how this kind of infection adds to her Chiari pressure in her head. Please pray she will be able to rest and this antibiotic will not adversely affect her but aid in healing.

Thank you for continuing to pray for wisdom as we take each step. I am reminded I must yield to God's perfect timing. All Danica's days were written when there were none of them. We need more grace to rest in this truth and strength made perfect in so much weakness.