I think these updates are my favorite. Over the last year I have spent so much time buried in doctors, nurses, and procedures, that this blog became about explaining diagnosis and interventions. I am proud to say that as of today, knock on wood, I don't have any of that for you. Elijah is doing well. Like really, really well. According to the scale at home, he has FINALLY crossed the 20lb mark. His pediatrician said that he was actually on the growth chart (2nd percentile but who cares about those details). They actually had to increase the dosage on his medication because he gained weight. I don't think they have done that in a year.
Elijah started preschool about a month ago. I was panicked about the whole idea of preschool for my little guy. When Noah started school I worried. This was different. This was full blown freaking out. He was so anxious around new people that I feared he would be afraid all day long. That he would cry. That he would look for me and I wouldn't be there. Oh man, my heart was so heavy. I felt like by working, I was letting my little boy down. I felt like, because of his special heart, I should be able to stay home with him. But those are not the cards we were dealt and let's be real, I am a working mom. I am best as a working mom. Staying home with him would do nothing for either of us except relieve my guilt. So to school he went. And you know what? He did awesome. He was amazing. Can you believe that he did not cry? When he didn't cry the first day I thought it was a fluke and that the tears would start on day two. Then day two became day three and three turned into four. It has been a month. We have had a few tears along the way and a few moments of "you can't possibly be leaving me here again." But overall, this kid is flourishing. His language is exploding. He understands what you are saying and can follow multi-step directions. He is doing awesome.
Where I struggle is finding peace with him being okay. I feel myself always holding my breath. I'm always waiting for the other shoe to drop. I'm constantly watching his coloring and checking on his lip color (purple=bad). I'm monitoring his breathing and evaluating his effort. I need to relax. I feel like I am on borrowed time and I want that time to last as long as possible. I need to find peace in where he is now. I need to allow myself to stay in this moment. Instead of borrowing worries by looking into the future, I need to enjoy this moment fully and completely. So that is my goal. My mission. To sit in peace with where he is now. I will plan for the future but live in the present.
Tuesday, October 22, 2013
Saturday, September 28, 2013
Doctor's Appointments
I've talked about it before. The incredibly long, incredibly intense days that are Elijah's cardio appointments. It wasn't until I was talking to one of my closest friends that I realized what makes those days so intense. It isn't the time. Six hours really, in the long scheme of things, isn't that long. It's what exists in those six hours that makes it so exhausting. It's the worry, the anxiety, the anticipation of something going wrong that sucks the energy right out of you.
It starts with an xray. You finally get to UCLA, after battling traffic, and get your car parked (mind you it costs $11 freaking dollars to park). You make your way up the elevator and go to radiology. The nurses there recognize Elijah and are excited to see him. You enter the waiting room and wait to be called back. It doesn't take that long until they come for you. You take Elijah back and sit him on the seat and get your apron and his blanket. You try your best to hold him still, but he is not happy about any of this. They take their pictures and you are grateful that they work quickly. Once you are done with radiology, you have time to kill. So you make your way to the cafeteria and grab a snack and try to keep Elijah entertained all the while wondering if the xray showed fluid on the lungs, or if his diaphragm looks any better, or if a coil came loose.
As time gets closer, you head to the echo. Again, you wait in the waiting room to be called back. Once they come to get you, you realize that this is going to be rough. Really, really rough. You wonder if you brought enough snacks to get through the next hour. Is he going to rest peacefully? Is he going to cry hysterically? How bad will it be this time? You get to the room and begin to take his shirt off. He cries. You lay him on the table and lay next to him. You try your best to sooth him and comfort him. You realize that he isn't hurting, just angry and scared. Your heart breaks a little. You give him suckers and make shooshing noises. You sing to him. You stroke his hair. Until finally, almost an hour later, the tech is done. You wonder what the tech found. Is his arch narrowing? Has the function deteriorated? Fear starts to settle in.
You clean him up and head to the next floor to wait for the doctor. The wait in the general waiting room is not bad. They bring you back and begin to take his vitals. He cries through the weight check and absolutely hates the blood pressure monitor. He has to hold still in order to get a good reading and that is an impossible task. The machine has to repeat the squeezing over and over and over before it gets a number. And that number isn't good. So we repeat the process. Again and again and until the number gets close to what the nurse expects. The nurse hooks him up to the pulse ox machine and waits. The number fluctuates between abnormal and absurd until the nurse asks if the number it settles on is "normal". Maybe it is, maybe it isn't. We move on to the EKG, not an incredibly invasive test, but uncomfortable non the less.
They begin their work quickly, attaching probes to his upper body. Attached to each probe is a thick, heavy wire. There are about 15 of them in total. He has to stay still for a few seconds in order for the probes to do their work. You try your best to distract him from the fact that each of the probes is pulling heavily on his sensitive little skin. The nurse waits for the machine to signal that the test is done and then she very quickly detaches the probes from the wires. But she leaves the probes for you to pull off of his skin. You wait until she leaves to start taking them off because you realize that she doesn't want to hear the crying. You try to do this quickly. You watch the skin as it pulls away from the probe and the cries begin. You tell him you are sorry and that you will try to move as fast as you can. You pull each probe off and they leave behind little red marks all over his upper body. You think about that adhesive remover you have at home and know that you will need that when you get home because his chest is covered in sticky goo. That, along with the left over gel from the echo, and you know that a nice, long bath will be in order tonight.
After you get them all off, you start the job of entertaining him. He runs all over. He plays with the nurses, the door, anything that keeps him busy. Because this is when the real waiting begins. Although you have been given a room, you know from experience that you are long from seeing the doctor. That in fact the doctor probably has three people ahead of you all waiting for the him to read their echos, look at their xrays, and examine their child. Not to mention that the doctor needs to take all the information he has accumulated that day and create a plan. He is a great doctor, unlike any you have come across, and you realize that he is worth the wait, but that doesn't make the wait any easier. You wait... and wait... and worry... and worry... and think of worst case scenarios and picture how the bad news will sound. You go all the way back to when the diagnosis was given. That moment in time that you will never forget. And you look at him now, so vivacious and energetic. So normal. And you remember that this time is a gift.
After at least an hour, if not almost two, of waiting the doctor comes in. He is so incredibly kind and you remember why you come to this place. He explains things in detail and asks you for your thoughts. He makes sure you are comfortable with everything and he sits with you. And sits with you. Until he is confident that everything has been covered and that everyone, including you, is okay with what was discussed. And you may not be okay, and that is okay. You understand.
You may need to visit the pharmacy after this is done or you may not. You pay for parking and head to the car. You load up a very, very tired baby and start the trek home. You started this during the lunch hour, and are now heading home in the thick of rush hour traffic. You have at least an hour, but most likely an hour and a half drive home. You are exhausted. Mentally, physically, and emotionally done.
Dion experiences most of these days. I am so grateful to have married a man who, no matter what, loves his children and will do whatever is needed. Elijah's last doctor's appointment went well. He now weighs almost 20lbs and may even be on the growth chart. We think Elijah will have his next cath during the summer and his Fontan, open heart surgery, in the fall. I try really hard not to think about that.
It starts with an xray. You finally get to UCLA, after battling traffic, and get your car parked (mind you it costs $11 freaking dollars to park). You make your way up the elevator and go to radiology. The nurses there recognize Elijah and are excited to see him. You enter the waiting room and wait to be called back. It doesn't take that long until they come for you. You take Elijah back and sit him on the seat and get your apron and his blanket. You try your best to hold him still, but he is not happy about any of this. They take their pictures and you are grateful that they work quickly. Once you are done with radiology, you have time to kill. So you make your way to the cafeteria and grab a snack and try to keep Elijah entertained all the while wondering if the xray showed fluid on the lungs, or if his diaphragm looks any better, or if a coil came loose.
As time gets closer, you head to the echo. Again, you wait in the waiting room to be called back. Once they come to get you, you realize that this is going to be rough. Really, really rough. You wonder if you brought enough snacks to get through the next hour. Is he going to rest peacefully? Is he going to cry hysterically? How bad will it be this time? You get to the room and begin to take his shirt off. He cries. You lay him on the table and lay next to him. You try your best to sooth him and comfort him. You realize that he isn't hurting, just angry and scared. Your heart breaks a little. You give him suckers and make shooshing noises. You sing to him. You stroke his hair. Until finally, almost an hour later, the tech is done. You wonder what the tech found. Is his arch narrowing? Has the function deteriorated? Fear starts to settle in.
You clean him up and head to the next floor to wait for the doctor. The wait in the general waiting room is not bad. They bring you back and begin to take his vitals. He cries through the weight check and absolutely hates the blood pressure monitor. He has to hold still in order to get a good reading and that is an impossible task. The machine has to repeat the squeezing over and over and over before it gets a number. And that number isn't good. So we repeat the process. Again and again and until the number gets close to what the nurse expects. The nurse hooks him up to the pulse ox machine and waits. The number fluctuates between abnormal and absurd until the nurse asks if the number it settles on is "normal". Maybe it is, maybe it isn't. We move on to the EKG, not an incredibly invasive test, but uncomfortable non the less.
They begin their work quickly, attaching probes to his upper body. Attached to each probe is a thick, heavy wire. There are about 15 of them in total. He has to stay still for a few seconds in order for the probes to do their work. You try your best to distract him from the fact that each of the probes is pulling heavily on his sensitive little skin. The nurse waits for the machine to signal that the test is done and then she very quickly detaches the probes from the wires. But she leaves the probes for you to pull off of his skin. You wait until she leaves to start taking them off because you realize that she doesn't want to hear the crying. You try to do this quickly. You watch the skin as it pulls away from the probe and the cries begin. You tell him you are sorry and that you will try to move as fast as you can. You pull each probe off and they leave behind little red marks all over his upper body. You think about that adhesive remover you have at home and know that you will need that when you get home because his chest is covered in sticky goo. That, along with the left over gel from the echo, and you know that a nice, long bath will be in order tonight.
After you get them all off, you start the job of entertaining him. He runs all over. He plays with the nurses, the door, anything that keeps him busy. Because this is when the real waiting begins. Although you have been given a room, you know from experience that you are long from seeing the doctor. That in fact the doctor probably has three people ahead of you all waiting for the him to read their echos, look at their xrays, and examine their child. Not to mention that the doctor needs to take all the information he has accumulated that day and create a plan. He is a great doctor, unlike any you have come across, and you realize that he is worth the wait, but that doesn't make the wait any easier. You wait... and wait... and worry... and worry... and think of worst case scenarios and picture how the bad news will sound. You go all the way back to when the diagnosis was given. That moment in time that you will never forget. And you look at him now, so vivacious and energetic. So normal. And you remember that this time is a gift.
After at least an hour, if not almost two, of waiting the doctor comes in. He is so incredibly kind and you remember why you come to this place. He explains things in detail and asks you for your thoughts. He makes sure you are comfortable with everything and he sits with you. And sits with you. Until he is confident that everything has been covered and that everyone, including you, is okay with what was discussed. And you may not be okay, and that is okay. You understand.
You may need to visit the pharmacy after this is done or you may not. You pay for parking and head to the car. You load up a very, very tired baby and start the trek home. You started this during the lunch hour, and are now heading home in the thick of rush hour traffic. You have at least an hour, but most likely an hour and a half drive home. You are exhausted. Mentally, physically, and emotionally done.
Dion experiences most of these days. I am so grateful to have married a man who, no matter what, loves his children and will do whatever is needed. Elijah's last doctor's appointment went well. He now weighs almost 20lbs and may even be on the growth chart. We think Elijah will have his next cath during the summer and his Fontan, open heart surgery, in the fall. I try really hard not to think about that.
Wednesday, August 7, 2013
Back in the Routine...
Summer is officially over for the Coley family. I have to admit, it was particularily difficult to go back to work last week. I was actually dreading returning. After taking some time to reflect, I realized that it wasn't work that I was dreading, it was leaving my boys. I really did enjoy spending the summer with them. We did so many great things and even though I had moments of frustration, I loved hanging out with them. Last summer was so incredibly intense. We were basically prisoners in our own home. Elijah was so fragile and Noah was struggling with sharing our attention. It was such a difficult time.
This summer was the polar opposite. The boys played in the old fashioned kiddie pool, we went to the zoo, and the fair was a main attraction. We spent time in the garden and Dion grilled on a regular basis. It was nice. It was very, very nice. Part of me wishes it could always be like that. However, I also know that Noah loves school. I think he missed his routined. He is an energetic kid who needs a daily schedule in order to thrive. Elijah will miss his brother, but Jackie is back and everyone loves Jackie. He will get some one-on-one time and attention and maybe, just maybe, we can return to a solid nap schedule.
I too realized that working is good for me. I actually do enjoy what I do. I struggle daily with juggling home and work, but I am trying to keep that balance. I have yet to figure out how, but I am trying. I think that this is a struggle that really effects mothers. Fathers, for some reason, handle this better. I'm not sure if it's something engrained in me, but the guilt kicks in if I don't spend "enough" time with my kids. To add to that, I'm not entirely sure what "enough" is. I feel like it's never "enough." Going back to work means returning to the struggle to find balance. During the summer, I didn't have to worry about this. I didn't have to experience the guilt and wonder if I was being a good mother. I wish there was a manual. Some sort of guidance for working mothers who also want to be successful professionals. But there isn't, so I continue to do what I hope is right for them and for me.
This summer was the polar opposite. The boys played in the old fashioned kiddie pool, we went to the zoo, and the fair was a main attraction. We spent time in the garden and Dion grilled on a regular basis. It was nice. It was very, very nice. Part of me wishes it could always be like that. However, I also know that Noah loves school. I think he missed his routined. He is an energetic kid who needs a daily schedule in order to thrive. Elijah will miss his brother, but Jackie is back and everyone loves Jackie. He will get some one-on-one time and attention and maybe, just maybe, we can return to a solid nap schedule.
I too realized that working is good for me. I actually do enjoy what I do. I struggle daily with juggling home and work, but I am trying to keep that balance. I have yet to figure out how, but I am trying. I think that this is a struggle that really effects mothers. Fathers, for some reason, handle this better. I'm not sure if it's something engrained in me, but the guilt kicks in if I don't spend "enough" time with my kids. To add to that, I'm not entirely sure what "enough" is. I feel like it's never "enough." Going back to work means returning to the struggle to find balance. During the summer, I didn't have to worry about this. I didn't have to experience the guilt and wonder if I was being a good mother. I wish there was a manual. Some sort of guidance for working mothers who also want to be successful professionals. But there isn't, so I continue to do what I hope is right for them and for me.
Tuesday, July 16, 2013
Summer Fun
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!
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!
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!
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