I have been on summer break for a few weeks now. Elijah is still breathing fast, but better than before. We think that fast breathing may just be his baseline for now. His cardiologist thinks that he may need his Fontan next summer. This would be an early Fontan. For those of you who may not know, the Fontan is the last of three open heart surgeries that our little guy needs. I was really hoping we would have until he was at least three. He needs to gain quite a bit of weight between now and next summer. Weight gain is not an easy task for this little guy. He now weighs 18lbs. He had lost about 10oz after his last cath. For those of you who have been following the blog, you know that Elijah does not recover well from any cath and this one was especially difficult. All of that said, he is doing well overall and is loving spending so much time with his brother.
Keeping both boys busy has been our main goal this summer. My mom came for a week and gave us a few days to go away together. Dion and I went wine tasting in Temecula and had a great time. When we got back, my mom and I took the boys to Knotts Berry Farm and the Long Beach Aquarium. They both LOVED these outings. My mom also took the boys to the Zoo. It was like a mini vacation for all! Last Sunday we, along with Auntie Tren, took the boys to the Orange County Fair. We all had a blast. The weather was perfect, although a bit warm, and Noah loved all of the rides. It had been a very, very long time since I had been to a fair and it brought back a lot of good memories as a kid. Dion had never been to a fair. All in all it was a perfect day!
Tuesday, July 16, 2013
Saturday, June 22, 2013
Summer Vacation
Dion and I are now on summer vacation! I love this time of year. We get to spend time as a family, visit with friends, and putz around the garden. I miss the pre-baby sleeping in, but I am enjoying the peacefulness of the early morning. Elijah had a doctor's appointment on Friday morning. He is growing on his own curve, but not really catching up to others his age. We are content as long as he is growing. Both of his ears still have fluid in them so we will continue with the antibiotics. The doctor is happy with his cognitive development. He has quite a few words and understands what we say. It looks like we won't be traveling for a while. His ears are still a mess and we are still waiting to make sure his breathing is stable. I was really hoping to go back home this summer, but it looks like I will have to cancel those tickets after all. I miss Alaska. I feel a sense of peace there that I don't typically feel anywhere else.
Elijah is finally getting back to himself. He started sleeping through the night again. He is back to walking around and playing with his brother. I missed his baby laugh and his big smiles, but after almost a week of misery, they are back! My dad has been in town for a week or so to attend my grandma's funeral and settle some of her estate. Although they are sad circumstances, I am glad he is here. The boys are growing so fast, I want them to know their grandparents. Noah loves his grandpa; Elijah is still trying to figure out who grandpa is. Elijah isn't the easiest person to get to know. He has a fear of people and it takes time for him to relax around new people. My dad rented a motorcycle for a few days and Noah thinks that thing is the best invention. He has spent every evening sitting on the motorcycle pretending he is driving. It is adorable!
I am looking forward to the next couple of weeks and hopefully we will be able to relax and refresh. It's been a rough year. We really need a moment of peace.
Elijah is finally getting back to himself. He started sleeping through the night again. He is back to walking around and playing with his brother. I missed his baby laugh and his big smiles, but after almost a week of misery, they are back! My dad has been in town for a week or so to attend my grandma's funeral and settle some of her estate. Although they are sad circumstances, I am glad he is here. The boys are growing so fast, I want them to know their grandparents. Noah loves his grandpa; Elijah is still trying to figure out who grandpa is. Elijah isn't the easiest person to get to know. He has a fear of people and it takes time for him to relax around new people. My dad rented a motorcycle for a few days and Noah thinks that thing is the best invention. He has spent every evening sitting on the motorcycle pretending he is driving. It is adorable!
I am looking forward to the next couple of weeks and hopefully we will be able to relax and refresh. It's been a rough year. We really need a moment of peace.
Tuesday, June 18, 2013
Grandma Ruby Thompson
I would really like to dedicate this post to my grandma, but I did want to let you all know that Elijah is home. He has been quite the miserable little guy and he seems to be very uncomfortable, but I am hoping he gets back to himself quickly.
My grandma passed away last week. Yesterday, the family gathered to celebrate her life and morn her passing. I have to say that I am a bit stunned by it all. I could write about her death, but I think I would rather reflect on her life. My grandma was vibrant. She breathed life into all she did and she did nothing half-way.
I remember her visiting us in Alaska during the summers and baking cookies and sewing. We loved when grandma came to visit because it meant lots of sweets and grandma lovin. My sister and I would come out to CA and stay with her for a few weeks during the summer. She was so much fun and always active with both of us. We would go to fairs and parks and attend her church. She would cook for us and laugh with us.
She was there for us through the good and the bad. She celebrated with me on my wedding day and comforted me when I cried during Elijah's first open heart surgery. Grandma loved my boys and my husband like no other. I always teased Dion and said that my grandma thought he was her boyfriend. She loved that man. So much so, that during the holidays, we would get a tray of cookies for the family and Dion would get his very own tray, specially made just for him. She would call him to chat and have him relay messages to my sister and me. She could have just called us, but she really just wanted an excuse to talk to him. He held a special place in her heart, just as he holds one for her.
Grandma's house was our family's touch-stone. Our center. It had nothing to do with the house. She was the glue that held us together. She was the example of what a person should be. What a mom, grandma, Christian... what a person should be. I can only hope to be even a little like my Grandma Ruby.
My grandma passed away last week. Yesterday, the family gathered to celebrate her life and morn her passing. I have to say that I am a bit stunned by it all. I could write about her death, but I think I would rather reflect on her life. My grandma was vibrant. She breathed life into all she did and she did nothing half-way.
I remember her visiting us in Alaska during the summers and baking cookies and sewing. We loved when grandma came to visit because it meant lots of sweets and grandma lovin. My sister and I would come out to CA and stay with her for a few weeks during the summer. She was so much fun and always active with both of us. We would go to fairs and parks and attend her church. She would cook for us and laugh with us.
She was there for us through the good and the bad. She celebrated with me on my wedding day and comforted me when I cried during Elijah's first open heart surgery. Grandma loved my boys and my husband like no other. I always teased Dion and said that my grandma thought he was her boyfriend. She loved that man. So much so, that during the holidays, we would get a tray of cookies for the family and Dion would get his very own tray, specially made just for him. She would call him to chat and have him relay messages to my sister and me. She could have just called us, but she really just wanted an excuse to talk to him. He held a special place in her heart, just as he holds one for her.
Grandma's house was our family's touch-stone. Our center. It had nothing to do with the house. She was the glue that held us together. She was the example of what a person should be. What a mom, grandma, Christian... what a person should be. I can only hope to be even a little like my Grandma Ruby.
Thursday, June 13, 2013
Post Cath
Elijah is out of his cath and is currently staying the night at CHLA in CV Acute. The procedure took over six hours and he spent over three hours in recovery. They were able to coil many, many collateral arteries. His body has been working overtime to create more collaterals and his body has even forced blood past coils placed during the last cath to continue to grow arteries that were meant coiled off. It looks like they got all of the major ones, however, he still has a cluster of really small collaterals that the doctor was unable to coil. The doctor was able to balloon his aortic arch with should relieve some pressure. One amazing thing was that they were able to find the left subclavian that they thought had been sacrificed during the Norwood. Not only did they find the artery, but they ballooned it and restored bloodflow to his left arm!!!!
After the cath, he has to lay still and flat for six hours. You can imagine how he must enjoy that! They were able to bring me a reclining chair so that I could hold him and still keep him straight. He was struggling to breath and he was working really hard. He had a very loud strider as well. They had to give him a breathing treatment and he needed a blood transfusion. By the time they transferred us to CV Acute, he was breathing much easier.
Although I love CHLA, I was incredibly frustrated with their personnel this time around. You have to remember that we have been through this many times, but this time was disorganized and not at all what I expect from CHLA. First, I got a call yesterday saying that they needed to reschedule the cath because they didn't have pre-authorization. They had gotten authorization through the secondary, but not the primary. Needless to say, I was upset. I demanded that they put the authorization through and tell the insurance company that it was urgent. I forced the issue until they agreed to do whatever it took to make it happen. You have to remember that Elijah has been breathing really, really fast and that he needed this cath. In the end, they were able to get the insurance authorization and we kept the appointment. Second, yesterday Elijah spiked a fever and was pulling on his ear. I told Dion that I thought Elijah had an ear infection. Dion had the nurse at CHLA look at his ears as part of his pre-cath physical. The nurse told Dion that Elijah's ears looked fine, and that even if he had an infection, he would be placed on antibiotics during the procedure and not to worry. Even if it was an ear infection, they wouldn't cancel the cath. Then, later that same day, the fever spiked and I emailed his doctor at CHLA. She responded that she had spoken with the nurse and that Elijah's ears were indeed fine.
I was still suspect, but went along with them because they are the experts. This morning, Dion told everyone that he thought Elijah had an ear infection. By this time, icky stuff was oozing out of Elijah's ear. Everyone said that Elijah was fine. Dion told the nurse and one of the doctors (not the doctor doing his cath) that Elijah had spiked a fever last night. No one cared. Apparently, during the cath, he spiked another fever. They cooled him down. He then spiked yet another fever in the recovery room. I spoke to his doctor and she was surprised that Elijah had a fever last night. No one had told her. Later, while in the recovery room, her nurse came by to see me. She basically reprimanded me, with a smile of course, for not having told her about his fever. Say What???? She went on to blame Dion and say that she told him that if Elijah was to get a fever, we were to call immediately so that they could cancel the procedure. She never told him that. She was lying. To add to that, she basically told me that we were lucky that they were able to extubate considering that he may be ill. I was soooo mad. We told everyone we saw the details of the night before. She was trying to cover her ass and at our expense. To add salt to the wound, once we were moved to CV Acute, a different nurse came by to look at his ears yet again. She said that he most definitely has an ear infection. Without a doubt. Most likely the fever is due to his ears being to infected. Poor kid. The membrane in his ear had ruptured and the infection was oozing out. I knew that he wasn't well yesterday, but no one took me seriously and then they tried to blame me for their mistake. Not cool. I understand making mistakes. Heck, I make mistakes on a daily basis. However, you don't blame others for those mistakes. Not cool.
Although I am still angry about the ear infection stuff, I am happy that Elijah is doing well. He is recovering and sleeping and hopefully he will allow Dion to get a little sleep tonight. It is our hope that he will be home tomorrow morning. Please keep him in your prayers!
After the cath, he has to lay still and flat for six hours. You can imagine how he must enjoy that! They were able to bring me a reclining chair so that I could hold him and still keep him straight. He was struggling to breath and he was working really hard. He had a very loud strider as well. They had to give him a breathing treatment and he needed a blood transfusion. By the time they transferred us to CV Acute, he was breathing much easier.
Although I love CHLA, I was incredibly frustrated with their personnel this time around. You have to remember that we have been through this many times, but this time was disorganized and not at all what I expect from CHLA. First, I got a call yesterday saying that they needed to reschedule the cath because they didn't have pre-authorization. They had gotten authorization through the secondary, but not the primary. Needless to say, I was upset. I demanded that they put the authorization through and tell the insurance company that it was urgent. I forced the issue until they agreed to do whatever it took to make it happen. You have to remember that Elijah has been breathing really, really fast and that he needed this cath. In the end, they were able to get the insurance authorization and we kept the appointment. Second, yesterday Elijah spiked a fever and was pulling on his ear. I told Dion that I thought Elijah had an ear infection. Dion had the nurse at CHLA look at his ears as part of his pre-cath physical. The nurse told Dion that Elijah's ears looked fine, and that even if he had an infection, he would be placed on antibiotics during the procedure and not to worry. Even if it was an ear infection, they wouldn't cancel the cath. Then, later that same day, the fever spiked and I emailed his doctor at CHLA. She responded that she had spoken with the nurse and that Elijah's ears were indeed fine.
I was still suspect, but went along with them because they are the experts. This morning, Dion told everyone that he thought Elijah had an ear infection. By this time, icky stuff was oozing out of Elijah's ear. Everyone said that Elijah was fine. Dion told the nurse and one of the doctors (not the doctor doing his cath) that Elijah had spiked a fever last night. No one cared. Apparently, during the cath, he spiked another fever. They cooled him down. He then spiked yet another fever in the recovery room. I spoke to his doctor and she was surprised that Elijah had a fever last night. No one had told her. Later, while in the recovery room, her nurse came by to see me. She basically reprimanded me, with a smile of course, for not having told her about his fever. Say What???? She went on to blame Dion and say that she told him that if Elijah was to get a fever, we were to call immediately so that they could cancel the procedure. She never told him that. She was lying. To add to that, she basically told me that we were lucky that they were able to extubate considering that he may be ill. I was soooo mad. We told everyone we saw the details of the night before. She was trying to cover her ass and at our expense. To add salt to the wound, once we were moved to CV Acute, a different nurse came by to look at his ears yet again. She said that he most definitely has an ear infection. Without a doubt. Most likely the fever is due to his ears being to infected. Poor kid. The membrane in his ear had ruptured and the infection was oozing out. I knew that he wasn't well yesterday, but no one took me seriously and then they tried to blame me for their mistake. Not cool. I understand making mistakes. Heck, I make mistakes on a daily basis. However, you don't blame others for those mistakes. Not cool.
Although I am still angry about the ear infection stuff, I am happy that Elijah is doing well. He is recovering and sleeping and hopefully he will allow Dion to get a little sleep tonight. It is our hope that he will be home tomorrow morning. Please keep him in your prayers!
Cath #4
Elijah is at CHLA getting his 4th cath done. I am stressed. I am worried. Please keep him in your prayers.
Tuesday, June 4, 2013
Blah... Eh... Ugh...
Umph... That is how I feel today. Elijah had his cardio work up today. Dion typically takes him to these appointments, but he wasn't able to today so I went. You have to remember that these days consist of an xray, echo, EKG, and doctor appointment. All of this typically takes 5-6 hours. These are looooong days and whenever I am the one to go with Elijah, I am grateful for Dion and his commitment to our family. There is no way I could do all of this on my own.
On a positive note, Elijah was a rock star today. He walked all over the place, the nurses knew his name and fawned all over him, and he said hi to anyone who would listen. You would never know that this kid has a life-threatening heart defect. He is typically shy and afraid of people, but man oh man he came into his own today and shined! He never cried during any of the procedures. He was amazing.
However, after all is said and done, he is going to have to go in for a Cath and a sedated echo. The sooner the better, according to his cardiologist. They are going to try to address three things; coil any existing collateral arteries, widen his aortic arch, and evaluate any blood flow issues. They hope that by widening the arch, they may increase blood flow this his arm as well as take pressure off of his right ventricle. Hopefully coiling the collaterals will help his breathing. I knew this was coming. I had a gut feeling we were headed back to the cath lab. Elijah's breathing has been really fast and his lips turn blue whenever he gets really active. He has started walking and is all over the place so we see his blue lips regularly now. I knew this was coming, but I'm still not happy about it. I hate that my little guy has to continue to go through these painful and scary procedures. I hate that he has to be scared. I just hate it everything about it. Ugh.
On a positive note, Elijah was a rock star today. He walked all over the place, the nurses knew his name and fawned all over him, and he said hi to anyone who would listen. You would never know that this kid has a life-threatening heart defect. He is typically shy and afraid of people, but man oh man he came into his own today and shined! He never cried during any of the procedures. He was amazing.
However, after all is said and done, he is going to have to go in for a Cath and a sedated echo. The sooner the better, according to his cardiologist. They are going to try to address three things; coil any existing collateral arteries, widen his aortic arch, and evaluate any blood flow issues. They hope that by widening the arch, they may increase blood flow this his arm as well as take pressure off of his right ventricle. Hopefully coiling the collaterals will help his breathing. I knew this was coming. I had a gut feeling we were headed back to the cath lab. Elijah's breathing has been really fast and his lips turn blue whenever he gets really active. He has started walking and is all over the place so we see his blue lips regularly now. I knew this was coming, but I'm still not happy about it. I hate that my little guy has to continue to go through these painful and scary procedures. I hate that he has to be scared. I just hate it everything about it. Ugh.
Tuesday, May 7, 2013
Balancing it all...
A couple of weeks ago I had the opportunity to attend a conference at CHLA that focused on women in STEM (science, engineering, technology, and math). They had an amazing panel of women that have accomplished a great deal in their fields. Each woman spoke about her journey, both professional and personal, and gave advice to the women in the room about perusing a career in STEM. Although I am by no means a “science person,” I found the event to be incredibly inspiring and motivating. They all spoke to the idea of juggling family and career. As a career woman, I am constantly trying to juggle my two lives, my two selves. It is difficult to figure out how much my personal life can bleed into my professional and vice versa. I want to be the best at both, but that means that they have to work together, not against each other. I am not just a mother. I am not just a career woman. I am both.
One of the speakers spoke to this idea of juggling our working lives with our children. She went so far as to insist that we don’t need to separate the two. We are both and we need to embrace both and force the rest of the world to do so as well. She talked about our partners and demanding that they to do their fair share at home. Women should not be responsible for all of the child rearing and housekeeping, along with their full time jobs. Listening to her caused me to reflect on my own life. I have not only a husband, but a partner. Dion takes full responsibility for our children and is in fact the main “deep cleaner” of our house! He takes Elijah to almost all of his incredibly long doctor’s appointments and he makes it a point to be at all of Noah’s soccer games. Dion does not hesitate to encourage me to pursue my career goals, even if that means that more of the child care and household chores will fall on him. He is an amazing partner.
I started reading a book call Lean In, by Sheryle Sandberg. The book centers on women with careers and leadership roles and focuses on the fact that although we have broken the glass ceiling, we are still not equals in the upper levels of leadership. It’s a fascinating book that really confirms what I had already heard at CHLA. The premise is that when faced with opposition or challenges, we should “lean in” instead of retreating. I think this applies to all aspects of my life right now, both professional and personal. I need to lean in to my career goals. I need to lean in when confronted with the scary aspects of Elijah’s health. I need to lean in to my marriage and continue to commit to making time for just Dion and me. I need to lean in. Words to live by I think.
Subscribe to:
Comments (Atom)