Sunny Days

  Sunny must have heard me tell her nurses that I hope she keeps being boring for them. This week - Sunny turned 7 months old, we meet with two potential in-home nurses, and for the most part it was relatively uneventful. However, yesterday she was a little off. The previous night, she needed some extra vent support, and puked up her breakfast Thursday morning at her Tiny Tots play date.  This morning, she was back on her normal vent supports when I came in, but they were running extra tests because she had a pukey night and had some watery stools. After I came in, she continued to vomit up seemingly everything in her stomach.  We're still awaiting some test results, but everything that has  come back has been clear. It's good, but bad because we don't know how to make her more comfortable.       Monday, Sunny got her newest accessory added to her collection! During her evaluation in February, her Physical & Occupational Therapists noticed a f...

  Sunny had a good week!      She's been tolerating her g-tube feeds well, and so we started trying to condense her feeds from continuous to bolus. Hopefully, she'll keep on doing well with the condensed feeds, and that will allow for some time with one less tube connected. Right now, she's taking her feeds over 2 hours every three hours, and so far so good!  The team is still working on balancing her meds as she's on some that aid in digestion, but could possibly be making her more sleepy. & We don't want her too sleepy for obvious reasons...like she's cute and we miss her when she's sleeping all the time:) Last night, the hospital was a few miles south of a tornado that touched down and after the power went out, some code was called and emergency precautions were put into place. The generators quickly brought the power back, shades were drawn, and Sunny's nurses got ready to make her mobile if need be. Through all that drama and the trees waving vi...

       Sunny had a rough weekend, and was dealing with a lot of reflux and vomiting. Her resting heart rate was higher than her norm, and she was just more irritable. The doctors paused increasing feeds through the g-tube in hopes that would help, but it didn't seem to make much of a difference. Monday was probably the most rough with her obvious discomfort from the reflux keeping her awake, despite her and our efforts to get her to fall asleep.          The team wanted to have a family meeting to just discuss our next goal and the next steps to take. During that meeting, Sunny's feeding was addressed as our immediate hurdle in our journey home. They laid out a couple alternative options to g-tube feeds, as we assumed she was having trouble with those. At one point, Chris asked if it'd be worth pulling her ND tube for a day or so and seeing if that helps at all. He had heard and read that ND tubes, because they go down the nose, through the s...

   Every Monday, the provider for that week rotates from to one of the five on staff to the next. Sunny hasn't had this week's doctor for a while, I think the last time was when they had just started noticing the declining function of her right ventricle, so he was very excited that her function was much better than it was at then end of February.   Now that she's older and on the least amount of sedation that she's ever been, she's more aware of what's going on - she has opinions, and she's an excellent communicator! The technician and I were both thankful she slept through Monday's echocardiogram. It was a pretty extensive look at the function and all her cardiovascular irregularities, so it took over an hour.  They wanted a full study of her heart to discuss her, once again, at their surgical conference yesterday.  A few weeks ago, the cardiac surgeon reached out to Sunny's doctor that was on that week because he had noticed her age & weight, ...