Monday June 7th Gavin had his chest x-ray and appointment with the Cardiologist Surgical Nurse Practitioners.
The chest x-ray was good. His heart is the same size as it was at discharge, they weren't overly concerned with the results. They were hoping it would be smaller than 2 weeks ago but they aren't alarmed. His blood pressure is good in all 4 limbs.
We've been home for a week now with our little guy and I must say, it feels great! We are all adjusting well, including the dogs. They've missed us this past month.
The feedings and the meds are a process, that's for sure, but Justin and I are getting into a routine and we feel pretty comfortable with it all. The little guy already pulled his feeding tube out, just 4 days of being home. Thank god Justin was here! We both had to place the tube before we were discharged, so I know I can do it, but Justin does it with no hesitation, as it should be.
Feeding Gavin a bottle is going to be a piece of cake, when ever that day comes. He takes 50cc ( almost 2oz)through the tube, every three hours and every other feeding he receives 15cc (.5oz) orally and 35 tube fed. He doesn't have a problem taking the bottle, it's that he is working toooooo hard, breathing toooo hard and is simply tuckered out before he's even done with the .5 oz. We see him doing so good with it, yet we don't want to push him. It literally takes him hours to recover from the exhaustion. of taking the .5oz.
Gavin sees a visiting nurse twice a week, which should change to once a week soon. We took him to his 1st pediatrician appointment 2 days after he was home. He weight in at 7lbs 8oz. The extra calorie mix is really working. His chest x-ray appointment is June 7th, following with a visit with the peds cardiologist nurse practitioner. Hopefully, we get the go ahead to take him to a few places. Now I'm not looking to take him to the mall or Meijer anytime soon but it would be nice to be able to take him for a walk or to Grandma and Grandpa's for a visit. I really don't see why we cant, it gets kinda sad being stuck indoors all the time. He has an appointment with his cardiologist in July. Hopefully by then, they will whine him off some of his meds.
Having Justin home has really helped me get a feel for what works and what doesn't when it comes to prep, feeding and meds and then the typical care for Gavin.We've had our funny moments, that's for sure. You know the new parent, "Holy Cow! I don't know that was possible from such a little person" moments. Bathing is not so therapeutic at this stage, we have learned it can be very traumatic.