You know that you are desensitized when it doesn't panic you when your son's cardiologist tells you that he thinks that part of your son's lung has collapsed. That's right folks. Not so good news at the cardio appt Tuesday. Elijah's cardiologist is still concerned about his arch and the narrowing that the echo suggests. Our little guy has decreased heart function, but before the cardiologist addresses the issue with medication, he wants to make sure the function isn't related to narrowing. He is also worried about the effort with which Elijah breaths. They did an xray and the cardiologist now believes that the hazy image is not fluid but perhaps part of his lung has collapsed. He thinks it is possible that the plication has come loose and caused the collapse. All of this to say that we are off to CHLA Cath Lab on Tuesday. He will be going in at 8am for a cath. If there is narrowing, they will hopefully be able to open in in the lab.
I know that this is not a major operation, but it still makes me nervous. They will have to put him under and intubate him. This procedure is what caused our three week hospital stay in July. The day he had his last cath is the day they had to call the code on him and we were rushed to the CTICU. I'm just not looking forward to Tuesday at all.
Saturday, September 29, 2012
Tuesday, September 25, 2012
Prayer Please
Dr. Sklansky, Elijah's cardiologist called yesterday. He is concerned about Elijah's tests last week, specifically his x-ray. There was fluid on his lungs. He asked that Elijah come back in today and get an echo and another xray. Dr. Sklansky is worried about how hard Elijah is working to breath. Please keep him in your thoughts and prayers. I am hoping the fluid has improved over the last week.
Sunday, September 23, 2012
Woot! Woot!
12 Pounds!!! That's right folks! Our little Elijah has doubled his birthweight! I know that he is small for a 6 month old, but I'm still excited (insert picture of me doing my happy dance!)!
On a totally different topic, I have to give major props to our cardiologist, Dr. Sklansky. He called us today, a Sunday, to check on our little guy. I have never met a doctor who would do something like that. We are truly blessed.
On a totally different topic, I have to give major props to our cardiologist, Dr. Sklansky. He called us today, a Sunday, to check on our little guy. I have never met a doctor who would do something like that. We are truly blessed.
Friday, September 21, 2012
Triumphs and Challenges
Well, after a week of sleep training, we are actually getting a little sleep in the Coley household. The first few days were rough and full of tears but also full of sleep. The first night he cried for an hour. It was one of the most difficult things I have had to do. I had to keep reminding myself, and Dion reminded me, that we were doing this for him as well as for ourselves. He was so tired that he was grumpy and fussy all day and had dark bags under his eyes. He needed sleep as much as we did. After the hour of crying, he slept for five hours straight! Unreal! He woke up and we fed him and he fell back asleep for another 5 hours. Crazy! He took a 2.5hr nap the next day after only 10 minutes of crying. He has never in his entire life taken a nap that long. The week has continued to have some tears, but much more sleep. He gets up 1-2 times a night to eat. The last couple of nights he has woken up a few extra times because he rolls over in his sleep and can't figure out how to get back to his original position. I guess he is practicing his new skills in his sleep. He is so much happier and content during the day as well. Overall, he is doing much better. We are still sleeping in the living room, while he sleeps in the bedroom to allow him to get optimal sleep. It's tough, but we are coping.
Elijah had his cardio appointment this week. I was hoping that this would be the last appointment for another 6 months. Instead, we have to go back in two weeks. We have never had to go to the cardiologist twice in one month. We have had to go to many different specialist, and at times had multiple appointments a week, but never an echo, x-ray, and cardio twice in one month. His cardiologist is concerned about narrowing in his aortic arch as well as wetness in his lungs. The cardiologist doesn't like how hard little Elijah breathes. There is also concern about his weight. There was talk of another cath. This was what resulted in our last 3 week stay at CHLA. Ugh. Dion took him to this appointment because I had already missed several days this school year to attend to Elijah's needs. I wish I had been there. I know that I wouldn't have done anything differently than Dion, but there is this incredibly feeling of helplessness and fear at not knowing everything. Being a working mom is hard, but being a working mom of a child who has special needs is almost impossible. There just aren't enough hours in the day to take care of everyone's needs. I worry about everyone and yet I can't seem to make things better for anyone. At times I don't feel like I do a good job at home or at work. There just isn't enough of me to spread around. I am hoping as he grows older and stronger that this will get easier. At least that is my hope.
On an entirely different note, Noah had his first trip to Disneyland last weekend. It was bittersweet. His old babysitter took him and I was unable to be there. It was so hard for me to say he could go. I really wanted to be there for his first time but I couldn't say no just to have him sit at home with us all day. He had a wonderful and time and loved the trip. I added a picture of our big boy at Disney.
Elijah had his cardio appointment this week. I was hoping that this would be the last appointment for another 6 months. Instead, we have to go back in two weeks. We have never had to go to the cardiologist twice in one month. We have had to go to many different specialist, and at times had multiple appointments a week, but never an echo, x-ray, and cardio twice in one month. His cardiologist is concerned about narrowing in his aortic arch as well as wetness in his lungs. The cardiologist doesn't like how hard little Elijah breathes. There is also concern about his weight. There was talk of another cath. This was what resulted in our last 3 week stay at CHLA. Ugh. Dion took him to this appointment because I had already missed several days this school year to attend to Elijah's needs. I wish I had been there. I know that I wouldn't have done anything differently than Dion, but there is this incredibly feeling of helplessness and fear at not knowing everything. Being a working mom is hard, but being a working mom of a child who has special needs is almost impossible. There just aren't enough hours in the day to take care of everyone's needs. I worry about everyone and yet I can't seem to make things better for anyone. At times I don't feel like I do a good job at home or at work. There just isn't enough of me to spread around. I am hoping as he grows older and stronger that this will get easier. At least that is my hope.
On an entirely different note, Noah had his first trip to Disneyland last weekend. It was bittersweet. His old babysitter took him and I was unable to be there. It was so hard for me to say he could go. I really wanted to be there for his first time but I couldn't say no just to have him sit at home with us all day. He had a wonderful and time and loved the trip. I added a picture of our big boy at Disney.
Friday, September 14, 2012
Will we ever sleep again?
I ask myself that question every day. This week was a rough one. Noah came home with a cold that quickly spread to Elijah, Monica, and me. Dion was able to escape it this time. Noah actually handled it pretty well and was his happy, go lucky self. Elijah was a train wreck. He stopped sleeping all together. His longest span of sleep this week was two hours that he slept after Dion gave him some medicine in the middle of the night. He basically cried and fussed around the clock all week. I don't think I have ever been so tired. I actually nodded off while coming home from work at a stop light. I am beyond exhausted. I'm not sure how much longer we can go without sleep. We take turns getting up with him, but our sleep deficit is so severe that we never feel rested, even on our nights off.
I decided that we are going to start sleep training this weekend. Because Elijah has been in the hospital so much, he has absolutely no self soothing skills. He had just started to consolidate his sleep before he was hospitalized for the Glenn. It is impossible to sleep long periods when in the CTICU. While in the CTICU he was basically taught to wake up constantly (nurses and doctors coming in and out) and wait for someone to come and sooth him back to sleep. Wish us luck, we have our work cut out for us.
On the bright side, Elijah went to his pediatrician this week for the first time since he was two months old. It was a very long appointment but it felt good to go to the doctor and have typical baby stuff to talk about. He weighed in at 11lbs 15oz and was 28 inches long. He isn't even on the charts. Everything else looked good. He got his four month vaccines and will get his flu shot next week. He will have to go in again in six weeks to get another round of vaccines. The pediatrician decided to take him off of the Protonics and see how he does. If all goes well, hopefully we will be able to also go off the Ranididine in a month. He still takes Lasix twice a day. We started solids this week as well. We decided to start with avocado because it is so full of good fat. Elijah doesn't quite understand that he is suppose to swallow the food. He moves it around his mouth and then spits it all out. We just keep trying!
He saw a pediatric urologist also this week and things look good. We were given the option to get him circumcised later this year. It scares me to put him under again, but the doctor reassured us that it is a simply procedure that he has performed on heart babies many, many times. He suggested that if it is even something we are considering, that we should do it now and not when he is older. The recovery is pretty simple and straight forward when they are little. It is a much more involved process when they get older.
He as an appointment with his cardiologist next week and he will have an Xray, EKG, and Echo performed. I'm actually a little nervous. If things go well, he could have a six month break between appointments. That would be incredible. It would be nice to have a break from doctors and hospitals for a bit.
I decided that we are going to start sleep training this weekend. Because Elijah has been in the hospital so much, he has absolutely no self soothing skills. He had just started to consolidate his sleep before he was hospitalized for the Glenn. It is impossible to sleep long periods when in the CTICU. While in the CTICU he was basically taught to wake up constantly (nurses and doctors coming in and out) and wait for someone to come and sooth him back to sleep. Wish us luck, we have our work cut out for us.
On the bright side, Elijah went to his pediatrician this week for the first time since he was two months old. It was a very long appointment but it felt good to go to the doctor and have typical baby stuff to talk about. He weighed in at 11lbs 15oz and was 28 inches long. He isn't even on the charts. Everything else looked good. He got his four month vaccines and will get his flu shot next week. He will have to go in again in six weeks to get another round of vaccines. The pediatrician decided to take him off of the Protonics and see how he does. If all goes well, hopefully we will be able to also go off the Ranididine in a month. He still takes Lasix twice a day. We started solids this week as well. We decided to start with avocado because it is so full of good fat. Elijah doesn't quite understand that he is suppose to swallow the food. He moves it around his mouth and then spits it all out. We just keep trying!
He saw a pediatric urologist also this week and things look good. We were given the option to get him circumcised later this year. It scares me to put him under again, but the doctor reassured us that it is a simply procedure that he has performed on heart babies many, many times. He suggested that if it is even something we are considering, that we should do it now and not when he is older. The recovery is pretty simple and straight forward when they are little. It is a much more involved process when they get older.
He as an appointment with his cardiologist next week and he will have an Xray, EKG, and Echo performed. I'm actually a little nervous. If things go well, he could have a six month break between appointments. That would be incredible. It would be nice to have a break from doctors and hospitals for a bit.
Subscribe to:
Posts (Atom)