 Update - Friday, June 6, 2008 7:46 AM
Friday June 6, 2008 1:10pm
Madison came home last night and had a pretty good night. She seems to feel pretty good for the exception of some tenderness at the cath sites. We had breakfast out this morning but she is just going to relax at home today. Last night she developed red puffy rings around both of her eyes. I gave her some Benedryl and it had improved some by this morning. I recently learned from Duke that they had put some gel and tape around her eyes when they sedated her and that her puffy eyes should not be a concern.
We've had some time to think about the events of yesterday and I will attempt to share some of our thoughts. Although yesterday we had hoped things would turn out differently than they did, today, we have a lot to be thankful for! First, Madison is not any worse off than she was when this started. Madison's body has adapted to her many obstructions/occlusions by forming venous collateral veins. These veins although small and many in number are getting her blood where it should go, it's just not taking the right path. Madi's procedure yesterday could have had a very different outcome in her experiencing serious life threatening complications in addition to not acheiving the results we had hoped for. We are truly thankful that she is home, watching TV, and being Madi.
As her parents we wish she felt good more than she does, we wished her head wouldn't hurt, and that she would have the same level of energy of other children her age. However, there are certainly a lot of parents out there that would gladly take all of those things if their child would stop being plaqued by some of the awful diseases that they have. All of the things I mentioned could be so much worse and quite honestly, we know first hand what those worse things are. So I am saying all that to say, that we are going to "Suck it up, & drive on" and hope for the best!
Although Intervention yesterday in the Cath Lab wasn't possible, Divine Intervention is possible! We are trusting that God has a plan for Madi and her life and that he knows right where we are right now. Yesterday, could have been a huge blessing that will be revealed to us in God's perfect time. We're okay with this...
I e-mailed some addtional questions today to her doctor and his nurse for which they responded quickly. Below are the questions and their responses. Many of you have been asking me these questions so I thought you would want to know the answers too.
Yesterday they found a blood clot in her left internal jugular vein. He indicated that this isn't a real concern.
Q) Why isn't this blood clot a concern?
A The reason that the blood clot is not a concern is that is an organized clot and it cannot break apart or have pieces dislodge from it.
Q) What are the risks of her having this blood clot?
No risks
Q)Does he have plans to give her something to break it up? Why or Why not?
No, there is no medicine to break it up. The thrombolytics that are used to break up clots have to be administered within 24 hours of its formation. And the time that this was formed is not known though it seems to be old.
The risk of attempting to break it up with medicines would be very high, and have increased generalized bleeding.
Thank you for all of your support and prayers through this, we've felt them!
Howard & Allison
Below are the highlights from yesterday's events that took place at Duke in the Cardiac Cath Lab....
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
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