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.