| Christena's Journey |
| Monday, December 5, 2011~Below is Christena's update from her and Kevin's appointments today in St. Louis. Her broncoscopy has been moved up to 9:30 our time in the morning. We will be heading out very early in the morning in hopes of getting there before they take her back. We are blessed to have Christena's original transplant coordinator, from St. Louis Children's, who is taking the day off from work to be there with her and Kevin, just in case we don't get there before they take her back! And also just because she loves her so much! How wonderful is that?! Please keep her in your prayers. Doctor's appointments went slightly better than anticipated. Kevin was back to 'normal' so that was wonderful news. My pfts, which had dropped last week, were back to almost normal. Going ahead with the bronch, as xrays were unchanged [but at least not worse]. Doctor believes it is most likely either the histoplasmosis spreading, or possibly, scar tissue. Obviously, the latter would be the best option. I really feel like I would be very sick if it were the histo, just because I was so very sick when I was first diagnosed, and I believe if it is spreading it would be 'worse'. But history has surely taught me not to be too optimistic. If it is the histo, we'd have to evaluate other factors, mainly my immune suppression and see if I am 'too' immune compromised. They can play with my dosing and levels to try and find a better balance, or if that isn't what they believe is the issue, they could pull out the big guns and put me back on Amphotericin B, which is a very strong drug with pretty severe side effects. I was put on that back in June, but my kidneys couldn't tolerate the medicine, so they put me on an oral form. If it is determined that is the best treatment option, they'll have to figure out a better way to administer it to me to try to preserve as much kidney function as possible. My bronch has been moved up, so I 'should' be taken to surgery at 9:30 EST. Won't know much until cultures come back next. Thanks for all your prayers! |
| HAPPY BIRTHDAY CHRISTENA! |
| Wednesday, December 7, 2011~Twenty three years ago today, God placed a precious little girl in my arms! She was so very tiny and frail. With each day she grew a little stronger, growing into the amazing young lady she is today! When I first looked into her precious eyes, I never dreamed she could grow to be such a determined young lady. I have seen her endure more than anyone I know. I admire her more each and every day of her life. I am so very proud to be her Momma and so thankful that God chose me to walk along beside of her. She has shown me what true strength and determination really is. I am so very blessed! Yesterday was a very long, and at times scary day. We were on the road by four a.m., but the traffic in St. Louis was unbelievable. She was scheduled to go back at 9:30 our time, and there was no way we were going to make it there before they took her back. The staff at Barnes~Jewish told her they would wait for us to get there! The bronc went well, except for the fact that the sedation wore off before they had completed the procedure. This required them to give her even more sedation which slowed her recovery. I won't go into all the details, but her nurse after the procedure was more interested in going to lunch than getting Christena stable, so she took her off of her oxygen before she should have been and said she could go home. Kevin stood up for his wife and told them he did not feel comfortable taking her home, so the nurse put her back on oxygen and brought us a wheel chair and said we could leave when we wanted and she was going to lunch. Kevin and I began weening her off of the oxygen slowly and had our dear friend Laura, her previous nurse, come back and make sure she felt like it was okay to leave before heading back to the hotel. She was more out of it than I have ever seen her, saying some pretty crazy stuff, and acting a little strange! We finally had to get back on the road and it was so hard for us to leave her not knowing for sure that she was okay. Kevin kept me up to date on her progress, and finally I received a text from her that said she was "feeling fine, and going to leave soon for the Pediatric Transplant Christmas Party!" You just can't keep this girl down! They enjoyed getting to see all of their medical staff from Children's and some of their transplant friends. I am now waiting anxiously to hear from her to know that her night went well and that they will be returning to Shepherdsville. Christena has to go and have an xray this morning to rule out a colapse from the bronc. Her xray after the procedure showed some haziness, so they want to be cautious and make sure there werre no problems from the biopsy. My hope for the day, is to have them home, safe and sound, curled up with their puppies. Thank you to each of you, for the notes, calls, texts and prayers! We appreciate each of you for always being with us on this journey. A very special thank you to Laura, for taking time off from work to be there for all of our family. We are so very blessed! We must now wait for results from the pathology report, as the actual procedure did not give any indication as to what is causing this "area of concern" on Christena's lung. Please continue to lift her up in prayer. And feel free to leave her a birthday wish in her guestbook! |