Thursday, May 3, 2012

Back to Boston... (Well, to Weymouth)

We went to Charlie's cardiology appointment today at the Boston Children's Physician's Group behind South Shore Hospital in Weymouth today. Charlie weighed in at 15lbs even. He has been ravenous lately, waking up two or three times a night to eat. That is NOT like him at all. Dr. Frias thinks it could be a growth spurt. She also thought the fussiness and gassiness is from the high calorie formula. We talked to Dr. Rhodes about switching him off of the 24 calorie, and he agreed so Charles is now on regular old 20 calorie baby formula! He didn't have the results of the 24hr Holter monitor yet so we will get those next time. He figured we might as well wait to do an echo until next visit as well. They did an EKG, and I guess it was showing up what a normal ALCAPA baby's EKG would look like. He didn't mention anything about it. He and the nurse practitioner listened for the murmur under his left armpit which they agreed was still there and is what Dr. Frias mentioned yesterday, but he also noticed a PPS, or pulminary stenosis under his right armpit and in his back. It's not something he was too concerned with. He said there was little leakage on the last echo. He said he will keep an eye on it next time around. The coreg we began last visit for Charlie's arrhythmia was increased today. That was the extent of our visit I have to call tomorrow to make an appointment for next month. He will have an echo then. I always feel more comfortable when an echo is done. I miss the security of the hospital. It seems as if being at home I almost forget that Charles has a sick heart. His meds and scars have become so normal to me that I don't even notice it anymore. At least when we were in the hospital, there was no forgetting that he is only in stable condition, that things could always turn sour, and although I don't want to think about that, I need to remember that anything is possible. I noticed that I get so anxious before visits. I now absolutely hate hospitals and doctors' visits. March 17, 2012 scarred me for life. Now whenever we go to a hospital or a doctor, I am afraid to get the worst news of my life because that situation became reality for me. I never thought it could. It amazes me that almost two months later, I am still in shock about it all. I honestly don't know how I have been getting through the past few weeks. I feel that my friends and family are definitely a big part of it. It is situations like this that made me realize that some people that I thought would always be there for me simply turned their backs while others that I never expected to step to the plate did more than I could ever ask. It is situations like these that make your eyes open wide, and while the truth is a hard pill to swallow, I am thankful that I now know where my children and I stand to everyone. There is no doubt about it. 
I have been swamped with things the past few weeks. It absolutely sucks. I have been going insane worrying about Addison's birthday party which is next month! Charlie's child dedication ceremony which is next week, and everything else inbetween. I wish I had one night to myself to just relax and spend with my friends, one night to de-stress and remember that I am not only a mom, but a 21 year old woman too. My whole life is about my children, and that is great, but I just want to steal one night to be selfish. 
This is the most I have written on the blog in quite some time because I usually don't have the time. Speaking of, I have to go give Mr. Charles his PM meds and feed and change him before bed. I am sure he will be waking up quite a few times tonight. 
As a side note, I wanted to mention that I requested his medical records from St. Luke's last week. I have to call tomorrow and see where they are since I should have heard from them by now. They are really going to charge me for them! I am curious to see if they mentioned an enlarged heart or liver at any point at his hospitalizations there, mainly the times he had chest x-rays. It bothers me a lot that Children's took 6 hours to diagnose him, yet he had two chest x-rays at St. Luke's, one a week before his diagnosis, and they never noticed his heart was bigger than normal??? I am not a radiologist or a doctor, but when I saw the x-rays, I was blown away by how huge and round his heart was. Well, I will be sure to update tomorrow. It's not as busy tomorrow. Visiting nurse and making phone calls. Good night, everyone!

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