Let me first say that Melia recovered so well from her surgery that we have been operating at the usual Horner warp speed. Praise God for her quick rebound from open heart surgery!
This month has been full of summer camps, swimming in the lake and at the pool, swim team and swim meets! Melia has been a trooper through it all. She happily comes along as we travel all over Omaha. We discovered she loves the song, "The Wheels on the Bus" with the Veggietales Bob and Larry singing. So, even though I am growing weary listening to the same song over and over it is fun to hear her request it by name, do the actions and sit happily in the car!
Melia had a follow-up with our local cardiologist and our pediatrician during the past month. The cardiologist repeated an X-ray and Echo was so very pleased with the results! He even said, "Maybe she will only need one PA Banding and not two!" I was so happy to hear this. Even though it is not certain it has been one of my prayers all along and I was so elated to hear that it was a possibility. The PA Band seems to be doing the trick and hopefully as she grows it will get tighter and make the left ventricle work harder. Once it can maintain normal blood pressure then Dr. Hammel can proceed with a Double Switch (if we choose to use him). To determine whether or not her heart is ready the cardiologist will continue to do Echocardiograms. When we get closer to her next surgery they will repeat a cardiac MRI and do a heart catheterization to get an actual reading of the pressures in her ventricle. Also, her wound is healing very well. I have been impressed how much the over the counter product, Mederma, has helped lessen her scar already.
We also followed up with our pediatrician who indicated we might need to put Melia on thyroid medication for an underactive thyroid. They did this as a screening test because she was adopted and intially it was a little underactive. When she had her pre-op done they repeated the test and it was a little more underactive. I am hesitant to start a potentially life long medication because they have not yet done a full thyroid blood panel and because this little girl of mine shows no signs of lethargy or hypothyroidism! She sweats like crazy, eats great, is growing great, does not sleep excessively and has no tummy troubles.
So, I am opting to repeat her labs and meet with the Endocrinologist before starting meds. We'll see what happens.
So, for now we are operating with a healthy appearing little two year old who is VERY attached to her mama and LOVES to be held by mama! It is very sweet, but my arm is tired! Melia is also letting us know her opinion more and more and is quick to say, "no!" when she doesn't like our ideas. Her communication is improving all the time and she continues to be adored by her brothers and sister! Although she has not been swimming in the lake with her incision, she has been to the swimming pool and loved to splash around in the water. It is turning out to be a wonderful summer!
Lastly, I wanted to write one comment about being your child's advocate in the ICU. We had a great experience at Children's and I really liked most of our nurses, the mid-levels and our surgeon. Having said that, there were times when they would make a decision about Melia that was just "standard" and when I questioned why we were able to get things tailored to her care a little better. One instance was the medication they used to help her start peeing. Melia was not urinating initially so they appropriately started a diuretic to help her. Once her kidneys starting working they said she would go home on the diuretic for two weeks. Knowing that this medication can sometimes decrease potassium in the blood I asked if we could try stopping it and see what would happen. The nurses were quick to say, "No, usually all the patients go home on the medication for two weeks." I pushed a little and asked if they would please run it by the PA or doctor and low and behold they discontinued the medicine and she kept peeing! It may seem minor, but it drives home this point: ask why (nicely) and make sure you're satisfied with the answer. Do your best as a parent to ensure that your child is getting patient-centered care and not textbook care.
Well, that's the update for now! I will try and post pictures of our happy, summer kiddos sometime soon!
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