Saturday, May 29, 2010

Pesky clot

Zoe had another ultrasound this afternoon. As I indicated before, the clot in her left leg encompasses two different vessels. After nearly 48 hours on low dose tPA it cleared out of the smaller vessel, but is still occluding the larger artery, the one needed for future catheter interventions - which is why they are so motivated to get the clot out.

Because Zoe is on the tPA, they are taking blood for labs every six hours. Because Zoe is small, and her veins have a tendency to roll once the needle punctures the skin, it is very difficult to draw blood from her. To avoid the challenge of searching for blood and sticking her every six hours, on Wednesday morning they inserted an arterial line which allows them to regularly draw blood directly from the art line.

Late Friday night, the art line became kinked, and it was removed early Saturday morning, at about 4:00 a.m. I even put on a surgical mask and helped with the procedure. Once the line was removed, however, they were unable to obtain blood without sticking her again. So, they let the labs for today pass. In the interim, before they decided what to do, they wanted to review the results of today's leg ultrasound, so they can gauge the effectiveness of the tPA.

First, the talk was of reinserting the art line and continuing the tPA for another 24 hours, for a total of 72 hours. Physicians from hematology, the catheter lab, cardiology and neonatology all pow-wowed throughout the day on what to do. Since insertion of an art line, which would need to happen if the tPA would continue for another 24 hours, carries certain risks, including damage to the artery in the wrist, where the art line would be inserted, and for the second and third open heart surgeries, an art line will be needed, so damaging it now could possibly jeopardize its access for future surgeries.

One potential side effect of the tPA is excessive bleeding. After the tPA was started, the catheter site in her left groin started to develop a hematoma, which periodically oozed blood. Friday night, one of the critical care fellows had to hold pressure on the hematoma for 15 minutes, to stop the bleeding. Additionally, the hematoma continued to spread, which was a concern, as it was evidence that the tPA was causing some internal bleeding.

So, in the end, the decision was made to cease the tPA and Heparin Saturday night at 9:00 p.m. At 10:00 p.m., they will start Lovenox, which is a medicine, delivered via subcutaneous injection, which will prevent the clot from growing, or future clots from developing. They will also do a follow-up ultrasound on Sunday morning to determine if the tPA broke the clot down any further between the time of the last ultrasound and the stoppage of the tPA.

Our bodies naturally produce tPA, so often clots will reabsorb, on their own, over a course of several months. The hope is that Zoe's body will continue to reabsorb the clot over time, possibly even in its entirety.

Now, the plan is to start the Lovenox and monitor the blood to get the Lovenox dose to the appropriate level. We also have to take a class to learn to administer the Lovenox injections once we arrive home. Zoe will also start aspirin on Monday and will continue on Lasix (for fluid retention).

Saturday night, after the tPA ended, Zoe was able to get the IV out of her foot, which was wrapped up like a giant boot. The actual site of the IV, on the side of her foot, was pretty bruised so I can't imagine that felt good.

We gave her a bath tonight, put her in some clean clothes and Stacey held her for a long time.

Zoe looked great! Her hair has some natural waves and curls, that are really highlighted right after its washed. It was obvious on her face that she felt better.

She has been through so much in her first two weeks, you can see some old soul in her face. Ms. Zoe is physically strong too, several times while Stacey was holding her she was lifting her head and holding it up. She kept scanning all the machines that, in the last week, rendered her a prisoner in her crib. Now she could be held again, and she and momma both enjoyed it.

Tomorrow/Sunday (the days are all blending together) we will likely return to the CCU/step-down unit and we may be looking at a DISCHARGE sometime next week. Yes, I said discharge! Assuming no more set backs, we will be discharged next week.

This journey was, is, and will continue to be a roller coaster, so who knows where the next climb, drop, or turn will be. For now, however, it would be nice if we could just climb for awhile. I'm sure sweet Zoe would appreciate it. We'd all appreciate it.

The Lihns


  1. You all amaze me! Your strength is inspiring! What a lucky baby to have you as her parents and how lucky are you to have such a strong little girl to call your daughter...what a tough little cookie you have there and I can only image she will only get watch out world when she's all grown up...nothing will stop her from doing and being anything she desires! All my love, Tre'

  2. Caleb, I remember when Steve was on Lovenox for a while -- he looked very bruised, but told me over and over (since I was giving his injections) that it didn't hurt at all. Since Zoe can't talk, thought I'd share what he was able to say. We continue to send good thoughts and prayers -- the pictures of Stacey holding little Zoe say it all! BG

  3. Oh my goodness it must have felt SO good to be held (and to hold her!). She must have been thinking 'it's about darn time!!' I completely agree with Tracy's comments above!