Visit to CHOP Hospital Children's Hospital of Philadelphia

It has been a long few days. We left Sunday afternoon and drove 11 hours to Philadelphia. We had an appointment with a hip specialist and returned home at 11pm tonight. It was a whirlwind trip with a lot of information to process. The doctor told us that Colleen should not bear any weight on her hips for 8 more weeks. This allows the holes which were drilled into the hips to heal. He stated that the bones are very soft during this time and collapse of the joint is more likely to occur. He said that he normally drills a bunch of small holes in the hip and then takes bone marrow from another area and injects it into the bone to help stimulate bone growth. He said that he would allow her to recover from this procedure and then reconsider another core decompression of the hips if her pain continues. At that time he would inject the marrow into the bone. He has had good results with sickle cell disease and variable results with cancers. This is not a quick cure or a guaranteed cure, but he felt it would be worth a try. 

     He informed us that she will need a hip replacement in the future but does not know when. It could be five, ten or fifteen years. In the meantime, no sports for high school. She can ride a bike or swim but no contact sports. He also mentioned a procedure done at Duke University called a femoral graft. Bone is taken from the femur with blood vessels and grafted over the hip. The new blood flow is then thought to allow for bone healing. I will call Duke tomorrow for an appointment to discuss this with them. It is just as invasive as a hip replacement. We would have to consider all the pros and cons. 

     We also found out that the osteonecrosis of the knees is also severe and may require knee replacements later. He suggested core decompression of the knees and wrists if her pain continues. He has a friend who worked with him that is now at U of M and he will speak to her this weekend to see if she would be willing to perform the procedure for us here in Michigan. Bone marrow would also be injected into these areas to help facilitate healing. Colleen is willing to have the surgery if her pain continues. We are slowly weaning her off of the oxycodone. She is currently on 40 mg every 8 hours. We can only wean by 20mg daily every 3 to 4 days to prevent withdrawal. This could be a lengthy process. 

     We appreciate all of your prayers and would ask that you continue to pray for wisdom for the doctors, direction for us, and encouragement for Colleen. She was understandably sad today but seems to be handling the news better than I would as a teenager. 

     

Results after core decompression of hips

I am going to update those of you who have not been on facebook. Colleen returned from her make a wish trip and her pain began to improve last week. We were able to decrease the amount of medication she was taking but it is still a huge dose. We had an appointment with the orthopedic doctor about 10 days ago and he states that core decompression of the hips was an option to alleviate her pain. Apparently, the dead bone, tissue, and inflammation in the bone presses on the nerves and was causing the excrutiating pain. We had the procedure done on thursday morning. She has two incisions on the legs with a few stitches at this time. We did have to increase her medications because of the incisional pain but are praying that we can take her off of a lot of this medication soon. 
     She is understandably frustrated with the added pain and the fact that she has been sick for so very long but she never complains. After the surgery we had a discussion with the ortho doctor. The procedure went well. They drilled holes in the hip bones to allow some of the dead bone to come out and everything went well. I asked him about how much of the femoral head or hip bone was affected and he said it was seventy five percent. None of the bone has collapsed at this time, but much of it is affected. He then said that she may need bilateral hip replacements in the near future. I was confused because he did not tell me this at her appt the week before. We clarified this with him. Apparently there is no way to predict how much of the hip will collapse. It depends on how quickly the new bone begins to grow in. When the new bone grows too quickly, it gets soft and the bone can collapse. There is another procedure which involves grafting bone and blood vessels from another area to help the circulation to the area but the ortho we have has not had much success with this operation. We are going to research all of our options. Monday I am calling both St Jude's and Children's hospital of Philadelphia to research all of our options. Please pray for relief from this pain, for encouragement for Colleen, and for wisdom for the doctors and that the Lord will provide direction in what treatment options will be best. Please also pray that the hips will remain intact. It truly would be a miracle but our God is able.