Friday, July 25, 2008
A brief update on Miss Priss Current mood: adventurous
We finally got the phone call from Macy Jane's cardiologist last Saturday night! MJ's conduit that was narrowed in April and restretched has once again become narrowed. She also has a few places in the distal parts of her pulmonary arteries that are narrowed again. The great news is that her heart's pumping capabilities is still excellent! We knew that the conduit would probably be narrowed again, it's just the nature of the beast with these things. However, towards the end of the conversation, Dr. Joshi informed me that Lebonheur recruited a world famous top-notch heart surgeon to join the staff in September. He told me that and told me that he highly recommends us having her next heart surgery right here in Memphis. The conduit change out, eventhough it is through open heart surgery, is a pretty common surgery...unlike her first operations, the Unifocalization. I told him that we have trusted his judgement calls from day one and if he could tell me that if it were his child he would let the new doctor operate on, then we would feel comfortable.
We have not made our minds up 100%, I would of course want to meet the new surgeon, and hopefully be able to talk with him. However, the flip side is this. We would have all of our support systems in Memphis and around the area, Steve wouldn't have to miss any work, I could work if I had to, we wouldn't have to deal with the strange culture of California, and basically it just boils down to this. Besides the fact that it is easier on us as MJ's parents, the most important thing is that I KNOW beyond a shadow of doubt that MJ would receive excellent care post-op at LeBonheur.
Most of you, if you read my blogs or talked with me in California, know that we had a terrible time with the way that MJ was cared for after her open heart surgeries in California. We had a handful of nurses that we grew attached to and one doctor besides Dr. Hanley that we liked and trusted. That isn't so great considering how many doctors and nurses took care of MJ. However, with the exception of a few nurses at LeBonheur, we have always liked and trusted the staff there. I know that when MJ comes out of the OR, Dr. Cabrera will take care of her like she were his own. I also know that the CVICU nurses and 7-west nurses are excellent. I have more peace about them taking care of my child than people across the country that are there for their $$ (some not all!)
I have been so busy since I talked with Dr. Joshi that I haven't researched this new doctor. The other option, which is still being discussed, is whether or not her conduit can be stented open during a heart cath. Dr. Joshi is discussing that with the heart cath docs next week. If so and it works, MJ might not have to have surgery for a year, hopefully. We are praying for that, but know that surgery is also very much an option. Either way, if it is a heart cath, that will be done in August or September, and surgery would be after september if we go that route.
Well, MJ is getting cranky so I am going to put her down. I will update on some more stuff later as time is available. Me, my mom, and MJ drove to Florida yesterday to help my sister and brother in law move into their first house. I will do anything to get back to Florida.....even if it involves moving
Please keep us and MJ's doctors in your prayers as we have dicisions to make. As always, we appreciate that. OH! MJ has been sitting up on her own for months now, but hasn't been able to go from laying down to sitting up by herself. However, over the past few days she has been sitting herself up! YAY!!!! Huge answer to prayer. She is also taking bites of food now....not huge amounts, but at least it is something!!!! She is crawling everywhere and in toeverything. She also starts therapy in2 weeks and we hope she will be walking by Christmas. I have my fingers crossed that that is a realistic goal Things have been going so well for her lately, I only pray that they continue that way!!
Much Love,
Bethany