Check out www.babyruffner.blogspot.com to see the fundraiser that Katie's Salon is holding for Kennedy. They are doing a CUT-A-THON for children's haircuts and 100% of the proceeds go to Kennedy.
Thanks!!!
Friday, November 21, 2008
Friday, November 7, 2008
Our day at Children's Hospital
I had been waiting for November 5th to come ever since her MRI in October, and my heart was pounding the whole day in anticipation of hearing the results. We had her Cardiology appointment first before we went to see the Pediatric Surgeon. I was looking forward to seeing both departments...but I really wanted to see the surgeon.
The Cardiologist was amazing and he did a complete run through with Kennedy. Our concerns with her heart were two small ASDs and a PDA. Basically, she had two small holes in her heart and a "tube" that never closed that was allowing blood to go the wrong way in her heart. After an EKG and an ultrasound, Dr. Cockerham came back in and said that she had completely healed herself! That was the best news in the world, and we praised God for giving us the results we wanted. Of course he told me that there might be a one in a million chance that her PDA is so small and inaudible that he could've misdiagnosed her....but he was very confident that it was gone. We'll take it!
Once we went up to the 4th floor, we had to wait a long time because we were late for our scheduled appointment. Once Dr. Burd came in to talk to us...he was totally clueless on why we were there. He thought we were just doing a post surgery follow up from her surgery back in April!!! Apparently, no one from Radiology sent him up the MRI and there was no communication between the departments. He was very apologetic, and I knew it wasn't his fault. I was still upset because we left there knowing more than he did. He did give her a rectal exam, and she took it like a champ! He said that he did not feel a tumor when he did the rectal exam, but he needed to view the MRI. We did agree that she needed her AFP(alpha feta protein) levels checked, so we headed to the lab to get her blood taken. He promised me that he would track down everything and call me either Thursday or Friday. He also told us that Dr. Powell was Kennedy's surgeon, but we had always been told it was Dr. Kanard. It turns out Dr. Kanard was the fellow (resident) and Dr. Powell as the main surgeon. So Dr. Burd was going to meet with Dr. Powell and review her file with him as well.
The phlebotomist could not get a blood sample from Kennedy's arm, and my baby screamed her head off. I stood out in the hallway because I knew I wouldn't be able to watch her be upset like that. Now, Kennedy has been very congested the past few days, so I handed Larry a tissue before they sat her down. Larry said she blew snot all over the place and that tissue was covered!! They ended up getting another nurse to try to get a blood sample from her other arm, and Kennedy was hyperventilating from being held down and poked with needles so long. When Larry and Kennedy came out, I had to get more tissues out to clean off her face from the mucus. Then I looked up and saw that Larry had green snot all over his cheek! lol. She had slimed him! lol lol. She cleaned herself out, that's for sure!!
I got to see Paula and Kathy from Concierge and they gave us some meal tickets so we could eat. We had not eaten all day, and finally sat down to eat something at 5 pm. We hit major traffic once we left, and it took us 3 hours to get home. It was a long exhausting day, but we were really happy about the results we got from Cardiology.
UPDATE!
Dr. Burd called me and said that yes there is a tumor, but it is 9 mm in diameter. It is between her rectum and her sacrum and he was not able to feel it because it was so small and blended with her scar tissue. He told Dr. Powell about our visit, and Dr. Powell wanted to know why we didn't schedule to see him. We didn't know who he was, and we just went with whomever the department set us up with...but Dr. Powell wants to see us from now on.
They viewed the MRI together and weighed out our options for removal of the teratoma. There is a huge risk with removing this teratoma because of the location. If they chose to go in and remove it, they could mess up her continence and give her a lifetime of troubles. That means that they could cut or destroy her muscle structure in her rectum and she would have major difficulties with passing bowel movements.
We are tracking down her previous AFP levels to compare them to the results from Wednesday, and then we will create an action plan from there. All of us agree that the risk is too high to remove the teratoma at this time. Instead, we will be doing interval MRI's to monitor the growth of it.
So overall, we are happy with our situation right now. God is keeping an eye out for Kennedy, and he is helping us with every step. Kennedy is a really happy baby, and we know she is going to be okay.
The Cardiologist was amazing and he did a complete run through with Kennedy. Our concerns with her heart were two small ASDs and a PDA. Basically, she had two small holes in her heart and a "tube" that never closed that was allowing blood to go the wrong way in her heart. After an EKG and an ultrasound, Dr. Cockerham came back in and said that she had completely healed herself! That was the best news in the world, and we praised God for giving us the results we wanted. Of course he told me that there might be a one in a million chance that her PDA is so small and inaudible that he could've misdiagnosed her....but he was very confident that it was gone. We'll take it!
Once we went up to the 4th floor, we had to wait a long time because we were late for our scheduled appointment. Once Dr. Burd came in to talk to us...he was totally clueless on why we were there. He thought we were just doing a post surgery follow up from her surgery back in April!!! Apparently, no one from Radiology sent him up the MRI and there was no communication between the departments. He was very apologetic, and I knew it wasn't his fault. I was still upset because we left there knowing more than he did. He did give her a rectal exam, and she took it like a champ! He said that he did not feel a tumor when he did the rectal exam, but he needed to view the MRI. We did agree that she needed her AFP(alpha feta protein) levels checked, so we headed to the lab to get her blood taken. He promised me that he would track down everything and call me either Thursday or Friday. He also told us that Dr. Powell was Kennedy's surgeon, but we had always been told it was Dr. Kanard. It turns out Dr. Kanard was the fellow (resident) and Dr. Powell as the main surgeon. So Dr. Burd was going to meet with Dr. Powell and review her file with him as well.
The phlebotomist could not get a blood sample from Kennedy's arm, and my baby screamed her head off. I stood out in the hallway because I knew I wouldn't be able to watch her be upset like that. Now, Kennedy has been very congested the past few days, so I handed Larry a tissue before they sat her down. Larry said she blew snot all over the place and that tissue was covered!! They ended up getting another nurse to try to get a blood sample from her other arm, and Kennedy was hyperventilating from being held down and poked with needles so long. When Larry and Kennedy came out, I had to get more tissues out to clean off her face from the mucus. Then I looked up and saw that Larry had green snot all over his cheek! lol. She had slimed him! lol lol. She cleaned herself out, that's for sure!!
I got to see Paula and Kathy from Concierge and they gave us some meal tickets so we could eat. We had not eaten all day, and finally sat down to eat something at 5 pm. We hit major traffic once we left, and it took us 3 hours to get home. It was a long exhausting day, but we were really happy about the results we got from Cardiology.
UPDATE!
Dr. Burd called me and said that yes there is a tumor, but it is 9 mm in diameter. It is between her rectum and her sacrum and he was not able to feel it because it was so small and blended with her scar tissue. He told Dr. Powell about our visit, and Dr. Powell wanted to know why we didn't schedule to see him. We didn't know who he was, and we just went with whomever the department set us up with...but Dr. Powell wants to see us from now on.
They viewed the MRI together and weighed out our options for removal of the teratoma. There is a huge risk with removing this teratoma because of the location. If they chose to go in and remove it, they could mess up her continence and give her a lifetime of troubles. That means that they could cut or destroy her muscle structure in her rectum and she would have major difficulties with passing bowel movements.
We are tracking down her previous AFP levels to compare them to the results from Wednesday, and then we will create an action plan from there. All of us agree that the risk is too high to remove the teratoma at this time. Instead, we will be doing interval MRI's to monitor the growth of it.
So overall, we are happy with our situation right now. God is keeping an eye out for Kennedy, and he is helping us with every step. Kennedy is a really happy baby, and we know she is going to be okay.
Thanks for staying posted!
Subscribe to:
Posts (Atom)
