picture to co me
Easton's heart condition is so severe and he is so critical during this time before his next surgery that he gets "special treatment." We have a binder we keep on him. We weigh him at the same time each day and record his weight. We also record each feeding, how much he gets, what type of food, and how he gets it (oral/feeding tube). We have also been recording if he throws up. He has been doing it a lot over the past two weeks and we changed formula twice thinking that would help and also stopped using breast milk. He did great for a few days on this new formula that is $50 for a small can! Then he started throwing up again and worse than before. We have even started a reflux medication.
Because he is high risk, we also have a doctor we can call at anytime with questions or concerns. I called her Friday to see if we could stop fortifying because last time we did he stopped throwing up and the past 24 hours he had thrown up a lot. She called the next morning and he had thrown up the past three of four feeds and was struggling with his overnight feed so she said we needed to come to Primary's and that he was going to be admitted so they could figure out what was going on (that was yesterday).
After being here a couple hours his oxygen started decreasing pretty quickly. They checked his blood count and decided he needed a blood transfusion. It did wonders for his oxygen. They had put him on oxygen cause it kept dropping, but after the transfusion they were able to take off the oxygen. His heart rate was also high and they said the high heart rate and low oxygen is often what these babies do when they need their next surgery. Obviously Easton isn't big enough for his next surgery. And since his sano (small tube they put in his heart for blood flow) gradient (the flow basically) was high when we went to cardiology, he may need a stent put in his sano. His heart rate his since gone down and since oxygen is back up, we may be able to put this off for a little while longer, but it will likely need done.
He also got a temperature while here. They checked him 30 minutes later and he was fine so we aren't sure why he had the temp. We are grateful for it though, because of it they decided to do a test to see if he had something, sure enough... the rhinovirus (common cold). We have tried so hard not to get him sick and he still did. We have said that a cold could land him in the hospital and here we are. People think I am paranoid, but they don't realize the severity of the situation. He has a little cough and yet it has thrown him for a loop. It was a blessing he was having the feeding issues because we were here to find out that there were more serious things going on. I am super glad his oxygen didn't start decreasing at home.
They also felt he was a bit "dry" once here. It is a term often used with these heart babies. They are on lasix to help them get rid of extra fluid. We don't want any on the heart/lungs because it makes it all have to work harder and on an already weak heart, it's not good. So, they stopped his lasix because he was too dry (a little dehydrated).
He is tolerating feeds so far. They put him on a continuous feed and have worked the volume and calorie count up. They are going to have a speech therapist come to see him bottle feed tomorrow. They wonder if he really isn't ready for a bottle like they thought. We will see tomorrow if they want to do another swallow study or other feeding plans.
It is weird because by being here I feel like a weight has been taken off my shoulders for a bit. I realized I carry a lot of stress. Being here it is like a bit has been lifted because I have people helping me watch him that know what they are doing when it comes to his care. It is nice to have that help.
We knew this journey would be a rollercoaster and as hard as it is on the emotions and so much more, I am so glad to have this little man bless our lives. He has the sweetest little face. I love his smell and looking into his eyes. Oh how I wish I could take all the pain away for him, but then I remember that our Savior suffered and died for all of us that he could succor us through these trials. We are so incredibly blessed. We are being watched over. We don't know what His plan is, but we know it's good. We know whatever it is that we will get through it.
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