Wednesday, May 26, 2010

Exhaustion, Clot, and Reflux

As you know, last night was a very difficult night for Zoe; and her mommy and daddy.

After the last update, late last night, the physicians explained that Zoe had an occluded blood clot in her left leg. This is not an uncommon side effect from the catheterization procedure. As a result of the clot, a Heparin IV drip was started. Heparin is an anti-clotting agent, which will not necessarily dissipate the clot, but will prevent it from enlarging and ideally prevent additional clots from forming.

Because of the Heparin prescription, there was a need to obtain a blood sample to determine Zoe's PTT level, which is simply how fast the blood in your body clots. Ordinarily it will take 30 seconds or so, on Heparin, it should be double, or in the range of 60-80. With the medicine Zoe's was at 45. In order to continue to test this level, and thus determine if Zoe is receiving the proper amount of Heparin, regular blood tests must be run. This is why they were trying endlessly to get blood from Zoe last night. Throughout the night, and early morning, they continued to try, trying different spots on the body, trying different types of lines (IV versus arterial lines), several different people tried. At one point, when Zoe hadn't eaten in nearly 24 hours (she had to fast for the catheterization, which was delayed, then lie flat for 6 hours afterward) after they were trying to stick her for 10 minutes, Stacey finally stood up and said "No more, this is getting ridiculous. She needs to eat." Two nurses and a fellow, looked at Stacey with almost a sense of fear. The fellow explained why they needed the blood, but agreed to stop and said they would try again later. They quietly retreated from the room after receiving the rath of Stacey.

After Zoe was finally able to sit up, we fed her, and after fasting for nearly a day, she ate like a monster. We tried to feed her sooner, but as I said in an earlier update, because she was laying on her side she choked and had to have the liquid suctioned out. To try to hold her over, every hour or so, I would inject sugar water, through a syringe, into the corner of her mouth. As she gobbled on the end of the syringe, you could see the hunger on her face. It was tough to see her suffer all day.

We ended up staying with Zoe until 7:00 a.m., after arriving at 9:00 a.m the day before. We didn't have any sleep in that 22 hours. Despite our desires to remain with Zoe, we went home to sleep for five hours or so. Then we returned to the hospital this afternoon.

When we arrived at the hospital Grandma and Grandpa Muenich were already there with Emerson. Emerson even borrowed a bike from the play room.

Zoe was much better today, however, she still has the clot. Sometime this morning, another fellow was able to insert an arterial line in Zoe within 5 minutes. Now, they can get whatever blood they need from that line and no longer have to stab her incessantly for blood. Based upon the PTT levels they drew this afternoon they increased the Heparin.

Thursday morning they will do another ultrasound on Zoe's leg. The hope is that the clot will be smaller or in the process of breaking down. So, please send positive thoughts and prayers that Zoe's body is beating away the clot. Once they run the Heparin IV for a day or so, they may be able to switch to a blood thinning regiment of aspirin and perhaps Lovenox, which is given subcutaneously through a needle, similar to insulin. We will know more about the prognosis and treatment of the clot over the next couple of days.

Zoe's appetite was very good most of the day today. Especially when mommy was feeding her.

During an evening feed, for the first time, Zoe arched her back, kicked her legs and screamed out in pain. The nurse, Stacey, and I immediately recognized that Zoe was having acid reflux, which is not uncommon in HLHS babies. It was clear she was still hungry but the reflux was making her miserable. As is common knowledge by now, she is a tough cookie and does not usually scream or cry too much, even when she became the human pin cushion last night, but this was causing her some real discomfort. So the nurse ran out and got an order for Zantac. By the time the prescription was filled, however, Zoe's discomfort subsided and she fell asleep. So, the next time she wakes up tonight, and before her next feeding, the nurse will give her a small dose of Zantac. Hopefully, that will relieve her reflux symptoms and allow her to eat in peace.

Poor girl is already uncomfortable, with all the IV's and wires on her, but still cute as hell. Hopefully her reflux was isolated and doesn't require prolonged medication or even additional treatment.

We will update more tomorrow.

The Lihns


  1. I'm always thinking about you and praying for the best. She is beautiful, and I can't help but admire the courage you and your family have shown.

  2. Words can't express the admiration I feel for you and your little Zoe! We are praying constantly for her and for all of you!
    Melissa Jones

  3. I am amazed by Zoe's strength and courage - She really can teach us all a thing or two. I am so sorry she has had a rough couple of days but hopefully things will (slowly) get easier for Miss Zoe. I am constantly thinking about you all and will continue to pray.

    Loves and Hugs.

  4. She is a cutie! Emerson rocks for being such a trooper. And good for mommy for putting her foot down. Thank goodness for grandma and grandpa. You are all amazing - whether you feel like it or not!