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!

Cath #4

Elijah is at CHLA getting his 4th cath done. I am stressed. I am worried. Please keep him in your prayers.

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.

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.

The croup and other happenings...

This is just a small update to follow up on the croup. Elijah is doing much, much better. His cough is almost gone and he is returning to his happy little self. If anything positive came out of all of this it would be that during our brief stint at CHLA he was monitored constantly. His pulse ox was in the mid 80's just like it should have been. During his last several cardiologist visits his numbers were in the 70's. This was causing some concern, although they only measured him for a few minutes at a time.

Noah was sick as well and is still coughing, but I have a gut feeling he is a little asthmatic. I'm going to give him a few more days and if it doesn't improve I will take him to the doctor.

Our niece, who has been living with us for the past few months and helping take care of Elijah, moved out last week. I am very excited for her and her future. She has an internship at a hospital to be a surgical tech. She is so very talented and will do so well!  Our house feels oddly quiet now with her gone and I realized that this is our opportunity to figure out who we are as family of four, instead of three. We have yet to do that.  

Once she moved out, I realized that this is the first time in over a year that our little family has lived in our house alone for any significant period of time. We have been incredibly blessed to have such giving family members who love our babies and are willing to sacrifice their time to care for them. These people have been integral to both Elijah’s physical health, as well as my mental health. A parent at work asked me about Elijah today and expressed the frustration I must feel and the "why me" attitude I must experience. I told her that I suppose it was better that I have a child with severe medical needs rather than someone else, not because I am super woman, but because I have the family and the friends and the general support structure to make this work and to make it okay. I will be forevery grateful to everyone who has stood by our side and continues to support us through this journey.

The Croup

Ugh. Our poor little guy has the croup. He started coughing on Saturday, but he was still his happy little self. He was a bit grumpy after his second nap, but I attributed that to teething. We put him down for the night like we always do and went to bed ourselves. Noah has had a cough for a week now and we were more worried about him and if he would be able to sleep. At 2am on Sunday, he was coughing a lot. I went in his room to check on him and to give him a little medicine and I instantly felt like something was wrong. I pick Elijah up out of his crib and realized that his breathing was loud... very, very loud (a strider). And very, very strained. My heart dropped. I took him to Dion and he instantly said we need to take him to the ER. Children's Hospital ER. Now. I felt like I was going to puke. With all that Elijah has gone through, nothing has been urgent while at home. Nothing has been scary. Those moments have always happened while we were in the hospital, surrounded by doctors and nurses. This was just us.

We started calling around to see if any family members could come over and stay with Noah. Both of us wanted to go to the ER with Elijah. Shanti, our niece, came over and we headed to CHLA. We have a hospital right around the corner from us, but we knew we needed to go to CHLA. Once we got to the ER they saw us immediately and got us into a room. I was certain we were going to be admitted. However, a nurse came into the room and checked his lungs and said that they sounded clear. I could feel the weight on my shoulders start to lift, just a little. Then a doctor came in and checked him. Elijah's lungs were clear, but the doctor could hear congestion and the strider he had was still very loud. The doctor said that Elijah had the croup. He gave Elijah an oral steroid and epi in the nebulizer. Over the next two hours, Elijah began to breath much easier and his mood improved drastically. By 7am we were told that we could go home. What a relief!

Elijah has slept a great deal today and isn't quite himself yet. Hopefully tonight will go smoothly, but I am trying to mentally prepare myself for a rough ride. It just breaks my heart to see him so miserable.

Spring Break & Cardio Appt

Last week was spring break for LAUSD. This meant an entire week, and a day, off of work! Noah also had spring break. Dion went to Las Vegas the first Sunday-Wednesday and the boys and I joined him on Wednesday. To be honest, I was a little nervous to be on my own with the boys for three nights and over three days. Noah is in his terrible threes (whoever said it was terrible twos was wrong) and Elijah can be fussy at times and hadn't been sleeping through the night for the past several months.

For those of you who know me, you know I can be a bit of a control freak. I find myself getting consumed with the "to do" of daily life and I don't enjoy the moments. I have a checklist of things that need to be done> lunches made- check, dinner- check, medicine given- check, bath- check, pjs-check... You get the idea. When Dion left on Sunday, I just decided to let go. To let things land where they may and not stress about it. If the kids didn't go to bed on time, it would not be the end of the world. If Noah's dinner was more convenient than healthy, so be it. I decided to relax and try to enjoy the break and you know what?  I did. I enjoyed the kids. I had fun. Things stopped being work, and became fun. Plain and simple fun. It was fantastic. We went on walks and got frozen yogurt. We went to the beach and had lunch and Noah rode his bike. We had fun.

On Wednesday, we took the short flight to Las Vegas. Noah has been on several flights before but this was the first time he really realized what was happening. He was so excited and did so well. Elijah loved being out and about and handled the flight really well. We took my sister with us as a kind of built in babysitter and she was incredibly helpful. I have always been one of those people who totally judged others who took their kids to Vegas. I always wondered what on earth people did with kids in Vegas. Well, I found out! Noah went to a shark tank at Mandalay Bay, we spent time at the pool and the playground (at the timeshare where we stayed), and of course meals were always an occasion. Friends of ours were also there with their kids and it was great to be away from daily life and relaxing with friends. Both boys adjusted with ease to their new surroundings and Elijah even slept through the night!

Lyndsay stayed with the boys at night and Dion and I were able to sneak away for a good meal and some quality time. There are times, among all the craziness of daily living, that I miss Dion even if he is in the same room as me. I miss those quiet times with just the two of us. It makes me grateful for little date nights and small get-aways. 

The boys did great with the drive home and enjoyed a stop at good ol' Charlie Browns. It brought back memories going back there. I remember going there as a kid myself. We all got shakes (even Elijah got a little ice cream) and wandered the store.This was our first family vacation and it could not have gone better.

On a completely unrelated topic, Elijah went to the cardiologist today. He is doing well and we don't have to go back for two months! That is the longest we have ever gone between appointments. They think that they will push his next cath off until next January. Dr. Sklansky is still a little concerned about the low function of his ventricle and has upped his Enalipril dosage. However, his lung function is looking even better and his lung seems to be expanding. Poor Dion had to deal with a very unhappy baby during the echo and appointment. Elijah didn't want anyone touching him except his daddy and this created a very unhappy little guy. I think he may have a little "white coat syndrome" from all of the procedures he has had done. Hopefully the two months between appointments will help.