• Evie update 8/10

    Date: 2013.08.11 | Category: Evangeline Faith | Tags:

    Evie had her cath on the 6th.  It was pretty uneventful.  They weren’t able to place the stent because it was deemed too risky.  We went home that same day.  She was a little puffy but seemed to be doing ok.  Thursday was a pretty good day, but by Thursday night she was looking bluer and was fussy.  By Friday morning Dan and I were both concerned – she wasn’t eating, she was fussy, and she just didn’t look right.  We headed back to Iowa City with the fear she might have clotted off her PDA. We learned from her cath that she had minimal blood flow to her lungs.  She has a very small opening in her PDA and a couple collaterals.  Those are the only things providing blood flow to her lungs.  They explained the opening to me as “it should be the size of a large straw and it is a pinpoint opening” – so not optimal to say the least.  Since her hematocrit is so high (which makes her blood thicker), she is at a risk for clotting her PDA off, which would be fatal.  Pretty scary facts to learn.

    Many people have questioned why she isn’t on blood thinners.  Children like Evie need their crit to be higher so they can oxygenate better, but a crit that is too high can cause problems with clotting.  It’s a vicious cycle of trying to stay on top of things.  You can’t have it too high (polycythemia) or too low (anemia).  Blood thinners just won’t work.  To treat, they remove a certain amount of blood (a partial exchange transfusion) until they get to the appropriate level for the hematocrit.

    When we got to the clinic her initial O2 saturations was 33%.  We leveled off in the 50-60’s.   Her cardiologist took her straight for an echo, they could see a little flow through her PDA so we we headed up to the PICU to admit her and figure out what was going on.  While they were trying to place an i.v., she crashed.  It was pretty scary.  They called it an acute pulmonary hypertensive event, partially due to polycythemia.  Or in mama terms, one minute I’m trying to comfort my daughter who is thrashing around because she doesn’t want to get poked and in the next moment, her lips turn a horrible shade of blue and she just goes limp and people start running in the room from all over to place lines and intubate.

    Today has been a mostly uneventful day.   She is still intubated and on the ventilator.  They have kept her sedated and giving her a paralytic to keep her calm.  Earlier this afternoon though they took her off the paralytic drug and since then we have been having trouble keeping her sedated.  She keeps waking up and thrashing around which is not a very good thing while being intubated.

    They are running tests to make sure she doesn’t have an infection. As long as she doesn’t have an infection, the plan is to do surgery on Wednesday .  During this surgery, they will try to place a central shunt.  This will allow much more blood flow through her pulmonary arteries.   The plan is to place the shunt and let her grow for a few months and then try to do the Glenn.   Hopefully, with the increased blood flow her pulmonary arteries will grow.  When she initially had her echo they told us that she had almost non-existent pulmonary arteries, which meant there was nothing they could do for her.  The cath, however, showed that she does have pulmonary arteries that could possibly grow over time, with increased blood flow.   Dan said, “He almost did a happy dance right there.”  Yes, the news was just that good.  It meant there was real hope.

    We are all cautiously optimistic.

    Today Zach brought us clothes and our laptop.  We had lunch with him before he left and Shawn Mullins song “Lullabye” came on the radio.  Now this may not mean much to you but it brought back another wonderful, comforting memory for me.  Years ago when Hope was going through one of her surgeries, Zach, Cassie and I were sitting in my friend Kathy’s driveway.  I was talking to the kids about how hard all of this was.  I told them I was pretty sure I could go through pretty much anything as long as I knew in the end that everything was going to be all right with Hope.  We prayed, I started the car and the radio played, “Everything is going to be all right.  Rockabye!”   You can call it what you want, but that was one of the biggest Godcidences in my life.  So for that song to come on today, a song that originally came out in 1998, being played on the radio, was just another comforting moment from God.  One more reminder that He is in control.  He has a plan.  His plan is perfect.  His will will be done.  I understand completely that “everything is going to be all right” does not necessarily mean all things will work out perfectly for what I wish for Evie.  But either way Evie will get better.  She will be pinker with surgery or she will be healed completely on the other side.  I know which one I choose, but I am a selfish mama who wants just a few more days of listening to her chant “mama, mama, mama’.