Wednesday, May 9, 2012

Another Day, Another Hospital

So the other night Charlie wasn't eating well. He was vomitting and was very cranky. I decided I would call the pediatrician the next morning, but at 12:45AM, he woke up SCREAMING so I made a bottle for him. (This has been the new norm for him. He doesn't want to wait for a bottle, not even one minute! Not fun at 4AM to wake up to a screaming, inconsolable baby who only wants a bottle in his mouth the second he opens his eyes.) Well, Charlie would not eat at all. He just kept screaming. He was trying to suck on the bottle, but he just kept yelling. I started getting nervous. This is exactly how he was when he was first diagnosed. These are signs of heart failure. I didn't want to wait until the morning now. I called Tim's mom's girlfriend to see if she was home from work. (It was 1AM.) She wasn't, but she told me that her sister was awake, and she was more than certain she would bring me to St. Luke's to get him checked out. I called her sister, and of course, she said she would. (She, like Trace, has been very proactive in Charlie's journey.) I showed the front desk Charles's discharge summary from Children's Hospital with all his information on it, and they sent us into a room immediately. We met with the nurse and were registered within twenty minutes which is highly unusual for St. Luke's. After meeting with three of the doctors there, they decided they would send us to Children's. They performed an EKG and did a chest x-ray, and by 5AM, we were on our way to CHB by ambulance. I absolutely hate being in an ambulance. They drive so friggin' fast, I almost pissed myself a few times. The needle on the spedometer was completely facing right. We sat at Children's ER/ He was sent for an x-ray of his belly, and they tested a stool sample. Finally, they decided that it wasn't his heart. It was just a normal stomach bug. They did give us good news. (We ended up meeting with cardiologist whose name is Wes. He actually performed the echo that diagnosed Charlie's ALCAPA. He recognized Charlie too. We met with Dr. Rhodes too.) They said his heart looks smaller than it did a month ago which means it is healing! That is fantastic.
We went home. I spent today recovering from lack of sleep. (I had only got two hours of sleep the night he went to the hospital.) I have been slacking a bit. I was supposed to call to check on the status of Charlie's medical records, make an appointment with Dr. Rhodes for nest month and with Erin, the nurse from Schwartz. I have been so busy cleaning and cooking and doing everything else that I have really been exhausting myself out and trying to catch some extra sleep in the morning.
Tomorrow, Jess, Charlie's visiting nurse, comes to see him at 8:45 so no extra sleep. I am going to make the calls I have been slacking on tomorrow.
I have been so emotionally and physically drained lately. I wish I could take a vacation. Well, I must shower and try feeding Charlie again. (He has been doing fantastic with eating though, waking up every three hours to eat.) Bedtime soon hopefully. I have been trying to update at least twice a week, but it gets very hard. I am sorry to all that have been looking for updates!

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!

Wednesday, May 2, 2012

4 Month Check Up

Charlie went for his four month check up today. He gained a pound and a half since last week! His lungs sounds great. The pediatrician could hear a murmur. Other than that, he is doing very well. He rolled over this morning for the first time! He was trying to do it again at the office, but he kept getting stuck on his arm! lol She was very impressed with him grabbing his feet and a few other things he has been doing. We discussed lowering him to 22 calorie formula since his weight is climbing steadily. We have to talk to Dr. Rhodes tomorrow when we go to South Shore to see him. We will get the results of his Holter EKG, and he will have another EKG and echo tomorrow. Hopefully, he has more improvement. I am trying to stay positive, but it seems as if the more active he becomes, the more out of breath and tired he becomes. He has been doing very lousy with bottles today compared to how well he has been doing the past week or so.
Early Intervention came yesterday for his assessment. They were amazed at his social skills, but they were concerned with his fine motor skills. How ironic that the day after the assessment, he starts grabbing toys more and rolling over and whatnot. He is too much. <3
I have to clean the house since it's been a busy, busy week. I will definitely update tomorrow after his appointment at South Shore.