 Update - Thursday, June 5, 2008 1:26 PM
Thursday June 5, 2008 7:30pm
Madi has eaten, got up, & walked around. She looks pretty pale but seems like she'll be fine with some rest. We plan to leave Duke to head home soon. Thank you for you prayers and your concern.
Allison
Thursday June 5, 2008 4:50
Madison is now awake and says she's starving! They have moved her to a room on the children's floor in the hospital. They want her to lay flat at least until 5pm and then we can try to sit her up and see how she feels. She says her head and her stomach are hurting right now. If she feels okay after while we will probably go home. We are trying to wait and make sure that she really does feel okay before leaving prematurely. We don't want to turn around and come back in the middle of the night.
Allison
Thursday June 5, 2008 3:20pm
After four hours they have moved Madison to the recovery room. With some trouble they were able to get the wire all the way through where they wanted it to go. Madison's veins are very small in the area they were going through. Because of this small size it was not possible to get the ballon through where it needed to go. They were unable to do Angioplasty or stints. They hope that as she grows that these small pathways will get bigger and give her some relief however, the Left Innominate Vein is really just completely flat and will not likely get bigger. They found a blood clot in her Left Internal Jugular vein. Dr. Rhodes was great but maybe somewhat disappointed that this procedure wasn't possible. He mentioned that we could talk to some surgeon's but his thoughts were that there really wasn't many places a surgeon could sew to because her veins are so tiny. We don't have plans to talk with a surgeon. At this point, it appears that she will just have to live the way she is and we need to be thankful for that. We are waiting to be allowed to go back with her in recovery. We will likely go home tonight depending on how she wakes up.
Allison
Thursday June 5, 2008 1:55pm
They just called us and indicated that they have been able to get a wire across the left femoral vein and over to the Left Innominate Vein. They are now attempting to get the balloon to that location and are having a hard time. If they are able to get the balloon over there they will then be able to perform Angioplasty.
Allison
Thursday June 5, 2008 1:00pm
They've just called again and said that Madison is still doing fine. They are still attempting the Angiogram. They were unsuccessful at getting the catheter into her Left Internal Jugular Vein because of the obstruction. This means that they have been unable to get in two of three catheters that they had hoped. They are currently attempting another route which is through the vessel below the heart, through her SVC (Superior Vena Cava) and over to her subclavian vein. They are still trying but indicated that they aren't very optimistic at this point.
Allison
Thursday June 5, 2008 11:45am
The team just called and said that they are still trying to complete the full Angiogram. They were attempting to put catheters in in three places. The catheter is in the left groin area. They tried unsuccessfully to put a catheter in the right groin area. They were unable to actually get it in because they found another occlusion with many venous collateral veins. We didn't know this was there.. This is new to the obstructions that we did know about. As of right now they are trying to put a catheter into her left internal jugular vein and will call back with progress. They confirmed that Madi is doing fine with the sedation.
Allison
Thursday June 5, 2008 10:40am
They took Madison back and we walked out of the room once she was asleep. It was around 10:15am. They've given us a pager and they said that they would contact us at least every hour. Madison had a good morning this morning and really didn't appear to be afraid. That's my girl! We'll update soon
Allison
June 4, 2008 4:00 pm
Madi went in for pre-op today. Everything went mostly as expected. Today they had a hard time getting her vein but they did finally get one. Madi was really brave! The plan for tomorrow has not changed. Other than if after the full Angiogram they don't believe that they can be sucessful, they aren't going to try. We don't want to subject her to any more risk than necessary. Madi is scheduled to go in at 9:00am. The procedure could be quick if they aren't able to intervene and could be all day if they are. I will be able to update this site from Duke as I have information. We're told that a member from the doctors team will call our cell, periodically throughout the time they have her back to let us know what they have done and what they are doing next.
Allison
June 1, 2008 4:50pm
Thank you for your support for the Leukemia & Lymphoma fundraising campaign! You guys have been wonderful! All donations must be in this week before Thursday. If you haven’t donated yet but would like to you can at www.lls.org/ncemwoy or Checks can be mailed to:
Allison Smith for Woman of the Year
The Leukemia & Lymphoma Society
401 Harrison Oaks Blvd., Ste. 200
Cary, NC 27513
Things have been pretty busy this week. First on Tuesday Duke called back with the date that they had available for Madi to go into the Cardiac Cath Lab. She is presently scheduled to go to Duke on Wednesday June 4, 2008 for pre-op blood work, and then Thursday, June 5th she will actually go in for the procedure in the lab. All of Madison’s records were received by both Cleveland Clinic as well as University of Chicago by Thursday. Both facilities reviewed her records promptly and called to discuss their opinions with me. We were very pleased by the professionalism & the turn- around time of both teams.
Cleveland Clinic’s Dr. Larry Latson upon reviewing her records largely agreed with pretty much everything we’ve been told thus far by Duke. He further confirmed what we already felt sure of in that we were in good hands with Dr. Rhodes. We discussed what the plan is for the Cath Lab on Thursday which I will explain in detail in a moment and he felt that it was the most logically approach to be taking at this time. He further highlighted the risks of the procedure on Thursday and suggested that they are small but possible. Dr. Latson doesn’t believe that anyone could be completely sure that the obstruction is actually what is causing her headaches. He said that her condition is extremely rare and that in his twenty five years of experience he may have seen one of these a year. He said that when you add all of Madi’s other factors that there really aren't any real cases to compare hers to. Two things that I heard from him loud and clear were first not to get our hopes up that the procedure will be successful in the Cath Lab but that it’s worth a shot. Second that regardless of the success of the procedure in the Cath Lab that he would not consider an operation. He said that the risks would be too great and he didn’t really feel that it would actually fix the problem. One thing he suggested that I thought was a good idea was to check Madison’s oxygen saturation (sats) level after giving her a bit of a work out. We will be doing this on Wed. at the pre-op appt.
University of Chicago has a team that meets on Friday’s to discuss cases. They reviewed Madi’s case on Friday. I was told that this team was made up of several Cardiologists, a Radiologist, & a Thoracic Surgeon. Dr. Mohamed Sulaiman called me on Friday to discuss the team’s thoughts. He also concurred that what is going on with Madi is extremely rare. The team in Chicago feels that it’s necessary to perform another Angiogram on Madi and specifically inject dye into the Internal Jugular Vein as well as the Left Innominate Vein to determine the length of the obstruction. They felt that the MRI-Vein that Madi had done was inconclusive as to the length of the obstruction. The Chicago team believes that surgery is doable but will not likely fix the problem and would carry too much risk. He mentioned that their team hadn’t had a tremendous amount of experience with putting stints in the Internal Jugular Vein. He suggested that I inquire about the mobility a person would or would not have if there was a stint in there. Their team that met and discussed Madi largely didn't think that the obstruction is where her headaches are coming from. In fact he quoted about 95% of their group didn't think that was what was causing them but they didn't know what was.
The plans for Thursday from what I understand are this. They will sedate her. They will likely go back in multiple places with a catheter in an effort to do the full Angiogram. If all goes well with the Angiogram they will begin the procedure to recanalize the vessel. Recanalization is a procedure that is not done very frequently in an effort to open the lumen for someone that has a complete occlusion. They will go into the Vein with a long needle in an effort to poke a hole in whatever is blocking up the vessel. If this procedure is successful then they will be able to go in and perform Angioplasty. Which is where they go in with a balloon and essentially blow up the vessel and if needed they use a stint to hold it up. Right now, even angioplasty is not possible. The risks of this although we’re told are small are bleeding out, blood clot, and accidental laceration which could cause excessive bleeding.
This week I had two relative profound conversations with Madi. The first was on Tuesday night as I was tucking her in I explained that we would be going back to Duke to the same place where they lit up her veins a month ago in an effort to make her head feel better. I explained that this time she would be put to sleep so she wouldn’t feel anything. She responded by exclaiming, YES! I told her that if it didn’t work that we would be coming home that night and if it did that she would be admitted. She then said “my head hurts really bad, I hope they admit me”. She then said “well, I don’t want them to admit me but I want my head to stop hurting, you know what I mean.” WOW, she’s only seven!
So the next morning I was driving her to school, we were just chatting casually about different things and I said I wonder who will be your teacher next year. She quickly replied, “I don’t even know if I’m going to be here next year.” Just then, I instantly felt physically sick thinking that she was afraid that she thought she was going to die and I hadn’t even noticed. I managed to calmly say, what do you mean Madi? Very innocently she replied, “That math assessment yesterday was really hard and I’m not really sure that I will even pass the second grade!” WHAT A RELIEF THAT WAS!
Please lift all of us up this week. We hope that they will sedate her successfully without complications. The last time she had the angiogram we were at the ER the next day with what was likely a reaction to the dye that they used during that procedure. Madi has a lot of allergies to meds and really with what she’s going in for on Thursday drug reactions should be the least of our worries, but it’s not.
Sorry for the long update.
Allison
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