Tues. Logan had a pediatrician appointment. He 7 lbs. 15 oz. Which is really good. She couldn’t believe how he was growing. She said that most heart babies stay pretty flat for a while or they just increase so slow. He is growing at a 45 degree angle on the chart so that is really good. We started talking about vaccines, which ones he needs right away, when he should start getting them. And that was it. Pretty uneventful.
Thurs. Logan had a cardiologist appointment with Dr. Patel. He had an EKG and an echocardiogram. He was pretty ornery and I was worried about how we were going to get thru the echo. Sure enough he screamed and screamed and it was very hard to get any pictures. So the tech went and got Patel. True to their relationship (we had a similar experience in the hospital) Patel sat down and started talking and he stopped crying and just stared at him. He knows his voice and was instantly calmed by it. When we were in the hospital last week Logan had been screaming for over 20 minutes and Patel walked in, started talking to him, Logan just started cooing. What? How can that be? We decided we are going to make Patel masks and record his voice so when Logan gets all worked up we can easily calm him down.
The echo showed that his pulmonary artery is starting to narrow and because he is growing so well he is going to soon start not getting enough oxygen. In the next couple weeks Dr. Patel wants to start him on medicine that will hopefully enable us to put off his first surgery for a couple of months. He is hoping to get Logan to at least 4 months old before they do a BT Shunt. This shunt will allow more oxygen to reach his lungs.
Not really ready to start talking about heart meds and surgery yet, but I guess we have been lucky in that we have had a month of (almost) complete normalcy with Logan. OK well, normal isn’t the right word but when we are at home with him (outside of the hospital and Dr. offices) hes seems just like a normal little baby.
Logan in his new swing…
This post is a little late, but I will tell, you get so exhausted that when an ordeal is all over you don’t even want to talk about it.
Last tues. Logan was really upset about something. He appeared to be in a lot of pain and was completely inconsolable. He was also vomiting with every feed and screaming so hard that he could barely breathe. So we took him to the ER at about 7pm on Tues. evening. We took him to a Akron Children’s hospital ER but one that was right up the road and not connected to the actual hospital. Well this whole situation was way too much for them. I explained his condition and they just really freaked out. They didn’t know what to do or how to proceed so they kept calling the ER Dr. at the Children’s hospital to find out what to do. They had him transferred to Akron Children’s hospital after multiple failed attempts at getting an IV in. At one point my husband yelled stop because it was like a 3 stooges episode with these nurses. Logan was so worked up he couldn’t breath, he was aspirating, he started choking, he was turning blue and they just kept going. It was one of the most excruciating things I have ever witnessed. I really didn’t want to go back to Akron Children’s hospital. I love our cardiologist there but I am not overly confident in the rest of the hospital. But we really didn’t have much of a choice. So Logan was taken by ambulance to the hospital and we followed by car. What they were worried about was an obstruction in his intestines. These kids have a high likelihood of having their intestines malrotated and they can easily get blocked because of that. The ER Dr. at the first hospital thought his stomach felt distended and it was likely he had an obstruction. When we got to the Hospital’s ER they weren’t nearly as concerned. They didn’t think he felt distended at all. They did some x-rays and had them sent out to be read. It came back that there could possibly be something wrong but it wasn’t life threatening. So anyway, they admitted him to the floor. The next morning he had an upper GI done to figure out exactly what was going on. I took forever almost 3 hours. It turns out his intestines are malrotated and that he has a small hiatal hernia (when your stomach moves up into your chest). We had to wait almost all day to find out if he was going to need surgery on his intestines right away or not. Luckily it turned out that he didn’t. We had to stay in the hospital for another 1 or 2 days (I can’t even remember now) just make sure that he could keep food down and then we were sent home. So basically we have no idea what caused his pain, the radiologist said he could have some intermittent blocking that fixes itself, and his cardiologist said it could’ve been so many different things. We do know that kids with midline stomachs have GI problems so it could just be his strange anatomy. I was so glad to get him out of the hospital without having surgery, his cardiologist said you never know how his heart would handle any kind of surgery right now. When we got back home he has some intermitten episodes of fussiness and vomiting but overall has been fine. As long as he is keeping at least half his food down and is still growing I am not concerned.
Last week Logan went back to the pediatrician yesterday for a weight check and hewas 6 lb 13 oz. That means he has gained over a pound since he has been home. I couldn’t believe it. My first (healthy) son didn’t gain weight that quick. They couldn’t believe his NG tube was out and how good he is eating.
This week Logan went back to the cardiologist and it was good news again. He is now 7 lbs 3 oz. His weight gain makes all the Dr.’s very happy. Dr. Patel said his color looked good, his oxygen was where it should be and he didn’t even need to do an echocardiogram. He reitereated that it is going to be up to Logan when he needs surgery. When his oxygen levels are in the low 70’s that is when we need to do a heart catherization to see what is really going on and then when his oxygen is in the 60’s he will need surgery. Currently, his oxygen is averaging in the mid 80’s.
He is starting to sweat quite a lot when he nurses. All that hair just becomes drenched but I guess its because nursing for him is such hard work. So we have decided to bottle feed half the time to give him a little break. He is also starting to pant more than even two weeks ago which is to be expected. Other than that you would never know anything was even wrong with him. He is becoming more and more of a little person. He can see more and recognizes our voices.
He even has begun to coo, which is the cutest thing ever.