I am scared. With so much running through my mind,
What if she is not getting what she needs?
How do I know if she needs to be taken to the hospital?
What if I trust these idiots, and it turns out to be serious?
What do I do to make her better?
Why is this happening, especially right now?
How am I going to get through a day of work without freaking out?
What if something is seriously wrong and no one is paying attention?
I am so tired, yet I cannot sleep. I feel like I am a walking zombie. I decided to get a 2nd opinion. I am going to call my insurance and confirm if we can go to a different doctor to get a 2nd opinion. I figure they would appreciate that more than me taking her to the hospital, and having them find one for us. I haven't called the heart dr, as I do not have a reason why I feel this way I just do. I am nervous they are not taking this as serious as they should.
Already Madison is in the 3rd percentile for weight. She should be around 23lbs at 13 months, yet we are 17lbs, and are still wearing our 6 month outfits. I hope tomorrow is a better day than today, with better news. This fluid thing scares me. It could restrict the heart causing it to pump harder. This could be a contributor to the weight loss, or it could be something entirely different. The only problem is, is that they do not effectively communicate with each other. I am frustrated and tired.
Wednesday, April 21, 2010
SUNRISE HOSPITAL
After leaving the dr office, I thought that my pediatrician was going to contact us as to whether we needed to be admitted to the hospital, or go to a different hospital. About 5pm no one had contacted me. I started to panic. I tried contacting the offices, but of course by then they were closed. I kept getting voicemail after answering service. No one seemed to listen to me and my concerns.
I paged the heart dr. He called back right away. He said that he was under the impression that someone was going to call me back tonight, so he was disappointed. He said the pediatrician could still be reviewing my chart and may call me back later that night. (He never did)
We fought with the different offices the next morning, and ended up going to Sunrise Hospital to see the GI specialist. Finally after throwing a fit we were able to see this GI specialist. I was not impressed! On their scale Madison weighed 18.1lbs and shrunk an inch and a half according to their measurements. I was very annoyed. Of course according to him there was no weight loss as he was looking at her gaining a lb in less than 24 hours. There is no way. He didn't seem concerned about her weight as much as the heart doctor. He was more concerned about the hole in her heart. He did not admit us he treated us as an out patient. We have another apt in 4 weeks! In the mean time he wants us to get blood, stool sample, and we will then be tested for allergies to see if she has some intestinal problems, or if she is not absorbing vitamins or calories. I was very angry. They are going to wait A MONTH to see if she isn't getting the nutrients she needs!
I left very upset. I didn't even have to call the heart doctor he called us. He was worried about us and wanted to know if we were being admitted. I told him no they let us leave he was concerned, but said he wanted to see us next Monday. As long as she is hydrated, happy, and doesn't appear bloated that I can keep her at home. I am suppose to do the stool samples, blood work, and if this GI specialist does not do anything he will do an ultra sound of her intestines.
It was very nice of him to contact us and be concerned. I said thanks for being so supportive, he said you mean aggressive... He said I would do the same for my kid and promised to take care of her. It made me feel better.
I paged the heart dr. He called back right away. He said that he was under the impression that someone was going to call me back tonight, so he was disappointed. He said the pediatrician could still be reviewing my chart and may call me back later that night. (He never did)
We fought with the different offices the next morning, and ended up going to Sunrise Hospital to see the GI specialist. Finally after throwing a fit we were able to see this GI specialist. I was not impressed! On their scale Madison weighed 18.1lbs and shrunk an inch and a half according to their measurements. I was very annoyed. Of course according to him there was no weight loss as he was looking at her gaining a lb in less than 24 hours. There is no way. He didn't seem concerned about her weight as much as the heart doctor. He was more concerned about the hole in her heart. He did not admit us he treated us as an out patient. We have another apt in 4 weeks! In the mean time he wants us to get blood, stool sample, and we will then be tested for allergies to see if she has some intestinal problems, or if she is not absorbing vitamins or calories. I was very angry. They are going to wait A MONTH to see if she isn't getting the nutrients she needs!
I left very upset. I didn't even have to call the heart doctor he called us. He was worried about us and wanted to know if we were being admitted. I told him no they let us leave he was concerned, but said he wanted to see us next Monday. As long as she is hydrated, happy, and doesn't appear bloated that I can keep her at home. I am suppose to do the stool samples, blood work, and if this GI specialist does not do anything he will do an ultra sound of her intestines.
It was very nice of him to contact us and be concerned. I said thanks for being so supportive, he said you mean aggressive... He said I would do the same for my kid and promised to take care of her. It made me feel better.
FOLLOW UP APPOINTMENT
A week later we went to our follow up appointment with the Heart Dr. Within the first 5 minutes he was concerned. Last Monday she weighed 17.8lbs and this week she weighed 17.1lbs. He was concerned she was losing weight for being already too small. He wanted to admit her to the hospital. Of course panic spread across my face. I know he didn't want want to make me panic, but whatever is best for her is what I want regardless of my reaction. He was surprised the fluid was still present, plus with her weight loss, lack of appetite, overly tiredness he wanted us to see a specialist. He was going to admit us to the hospital and wait for the GI specialist to come. The GI had rounds on Wednesday. I did not want her to stay in the hospital just to wait to see a doctor. The GI was going to be at Sunrise hospital on Tuesday so he spoke to my pediatrician and they said they would get me in. The heart dr. said to call him if they are not able to get us in, and if there is any problems to come back to the hospital as that was where he would be doing his rounds.
He seemed very concerned and said he would make sure we are okay. If the GI doctor did not take care of us he was going to take care of her himself.
He seemed very concerned and said he would make sure we are okay. If the GI doctor did not take care of us he was going to take care of her himself.
HEART DR CHECK UP
We went for the 6th month check up at the heart doctor. They did an echo ECG and ultra sound. The ultra sound proved that one of the holes has closed. Madison was born with 2 holes in her heart, one in the VSD and one in the ASD. The one that is suppose to close after birth has closed.
Then he noticed something he was not expecting. There is fluid that is building up between the heart lining and the heart. He was very concerned, and said we have to return in a week. This could be serious, or this could be nothing at all. A follow up appointment is scheduled for 1 week.
Then he noticed something he was not expecting. There is fluid that is building up between the heart lining and the heart. He was very concerned, and said we have to return in a week. This could be serious, or this could be nothing at all. A follow up appointment is scheduled for 1 week.
Sunday, April 4, 2010
MADISON'S BIRTHDAY DRESS
Our friend Bonnie, bought her the beautiful dress. She did an amazing job. She insisted on make her a pretty princess for her birthday. I am SO grateful for my friend. She looked amazing! The dress is absolutely gorgeous! I was so happy!
MADISON'S 1ST BIRTHDAY CUPCAKE
It has been awhile since we have posted anything. We survived the 1st BIRTHDAY! It was very hectic, but it went very well. We had a wonderful turnout and enjoyed ourselves. Everyone was so nice and generous. We also have survived our first home purchase. NOW is the hard part, getting it move in ready.
For Madison's birthday I made it a point to master a gluten, dairy, sugar FREE creation. I was so proud on the 8th batch that they were actually edible and not bad. She seemed to love them so I could not complain.
She is so my daughter. My friends thought it would be funny for her to get super messy especially since me being the OCD mom I hate mess. I LOVED the fact that she takes after me and did NOT want to get messy. She would not put her hands in it. It took her a minute to figure out how to eat this as everyone was telling her to use her fingers. She stared at her hands and then went mouth first into the cupcake.
For Madison's birthday I made it a point to master a gluten, dairy, sugar FREE creation. I was so proud on the 8th batch that they were actually edible and not bad. She seemed to love them so I could not complain.
She is so my daughter. My friends thought it would be funny for her to get super messy especially since me being the OCD mom I hate mess. I LOVED the fact that she takes after me and did NOT want to get messy. She would not put her hands in it. It took her a minute to figure out how to eat this as everyone was telling her to use her fingers. She stared at her hands and then went mouth first into the cupcake.
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