Thursday, November 17, 2011

Hot Mess

I think this is the longest I've gone without blogging since I started this blog. I guess I haven't had much to say that I was willing to share with the world. (I don't think I've ever run out of things to say though. If you've met me in person, you know it is hard to shut me up.) Lately though, I've thought it best to keep my thoughts and words close to the vest.

I have been petrified, angry, resolute, determined, and wistful. All at the same time.

The Dancing Queen had her seventh heart catheterization yesterday. They called me all of a week ago to schedule it. Six days to plan. Well, five days if you count the one day of pre-op testing at the  hospital. That is not a lot of time. Needless to say, my emotional journey had to be sped up and condensed, leaving me a hot mess.

I'm still trying to comprehend all that we were told, but I think overall, it was as positive as we can expect for DQ. We've been told point blank and without reservation that DQ does not have pulmonary hypertension. But we were not told that she does not have high blood pressure in her pulmonary arteries at places. So, semantics are at play.

We were told the pressure in her right ventricle is higher than they'd like, but not high enough to necessitate surgery. However, there was the mention of the possibility for surgery in a year's time. I was not expecting that kind of news.

The doc tried to balloon DQ's stent in her right pulmonary artery bigger, but couldn't.  The doc tried and tried, coming at it in all kinds of ways. In a year's time (or sooner), when they cath her again, they may try balooning again by going through DQ's neck and leg at the same time. Scary stuff. There was also talk of possible non-bypass procedures/surgeries if the neck/leg combo does not work. All of these things were fairly frightening.

Additional work that was called for, could not be done because it posed too serious a risk without enough possible benefit.  So, at the end of the day, we got pictures and a plan for other pictures to be taken in the future. Unfortunately, the docs could not take all of the pictures needed.

The entire situation makes me angry that my baby had to go through this. Better imaging technology is needed! An invasive procedure should not be the only way to image the vasculature of the body.

It makes me sad that they couldn't help her like she needed. It worries me that we have to watch her closely for the need of additional surgery. And it breaks my heart to see my sweet, sweet girl in pain and crying. Her access is so limited that she has bruises all over body where they tried to place arterial lines and IVs (but failed).  Before today, she had already lost 3 out of 4 cath points in her legs.  To top it off, DQ is incredibly scared that she will have to return to the hospital. She now knows the hospital causes pain. The hospital is the boogey man. She begged us to not make her go back. And all we could say is "not tonight."

At the same time, I am incredibly grateful to know how well my baby is doing. I have many friends whose children did not make it. Friends whose children are much, much sicker today. Life is so very, very precious. Hug your babies tight and if you no longer hold them with your arms, I am sending you my love right now.


  1. Giving you a virtual hug. You're not a hot mess; you're a mom facing some pretty tough stuff. Praying for you all.

  2. Many hugs and prayers coming your way. I don't think you are a hot mess...just a great mom that is worried sick about her little girl.

  3. My stomach tightens just thinking of the pain and frustration this must bring you guys.

    Even through of all of it, I love that you can stop and realize how blessed you are to still have your DQ and reach out to those who have had to say goodbye to their babies.

    Hoping for a healthy holiday for you guys.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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