Apparently the clot does not pose any immediate health risk to Zoe or her leg, as the blood flow is making its way down the extremity through other veins and vessels. Long term, however, the clot could create some big problems. One, if the clot is left untreated it will render the artery useless for future catheterizations, which she will need. The catheter team was apparently concerned enough about that possibility that they are pushing for aggressive treatment. The second potential long term effect of leaving the clot untreated is that the leg may not grow at the same rate as the un-clotted right leg, because the clot alters the level of blood flow. Therefore, her legs would be different lengths.
The treatment that was suggested to break up the clot is tPA. tPA is a clot busting drug, that is most often used in the treatment of strokes. It is a very strong medicine, with the potential for some serious side effects. We'd heard of tPA, but didn't previously know much about it. Just the mention of it, however, made us very nervous. We immediately started doing research on the drug and its use. Not surprisingly the medical team at CHOP did not take the decision to recommend the tPA lightly - Zoe's cardiologist, neo-natology team, catheter team, cardo-thoracic surgeon, and a pediatric hematologist, specializing in blood clots were all consulted and part of the decision making team. We met with the hematologist and peppered her with questions. She indicated that the recommendation is to run the tPA at the lowest dose for 48-72 hours. She said some hospitals run a larger dose, for a shorter period of time, but she said the recommended approach has less risks of complications.
The major complications that could result from tPA are significant bleeding and brain hemorrhages. After weighing everything, we decided to approve proceeding with administration of the tPA, in the hopes the clot will be busted, then we would no longer have to worry about the clot or the possibility of administering Lovenox (a blood thinner) injections for several months after we return to Arizona.
Before the tPA can begin, they have to administer a dose of platelets. That already happened. The tPA is hooked up and literally just started as I am writing this. Needless to say, because of the seriousness of the side effects, we are going to stay in Zoe's room and observe her all night. Right now, we are nervous, but hopeful that the tPA does its job and busts this stubborn clot.
Right now, because the tPA needs a dedicated line, Zoe has an IV in each arm and her right leg. Poor thing is getting so beat up.
Please send prayers and positive thoughts and energy that the medicine works and the clot is busted. If it does, then all three IVs can come out and we can get back on the road to discharge and a return to Arizona.
In the meantime, here's another family picture.
The Lihns
Yay! I love the family pic! Best one yet cuz everyone is looking at the camera! I do not envy you, the serious decisions you are having to make, one right after another. Sending Ms. Zoe lots of positive energy tonight (Brent said I could steal some of his while he's sleeping!) to help her bust those darn clots down!! (I have a picture of Mighty Mouse in my head powering through. That would be so wonderful if we could do that somehow.) Don't forget to take care of Mom and Dad too - you've got to get at least a little sleep some time. (((hugs)))
ReplyDeleteSo sorry to hear about the seriousness of Zoe's clot, and the treatment. I am amazed by her and all that she has been through. Poor baby... She shouldn't have to endure the pain and suffering that she has gone through, but she will continue to fight. Zoe is lucky to have parents like you, who are so strong and so committed to fighting for her. Sending lots of love and prayers Zoe's way (and I know I can speak on behalf of my Mom, Dave, and Dave's Mom - they are sending their constant prayers and positive thoughts).
ReplyDeleteLots of love - Meg