Warning. This is a long post.
First off. Happy New Year! The holidays were busy for us and have come and gone. Alexander continues to take one day at a time and constantly showing us to not let our guard down.Thanksgiving, Wes and I learned that Alexander requires 3 liters continuously when awake (we thought 2-2.5 was enough). We learned this the hard way, as in, we were 2 hours away from home and he wasn't feeling 100%. What was suppose to have been a 4 day stay with some family, turned into an over night trip. We had to come home the day after Thanksgiving because the portable concentrator he was using, was not proving enough oxygen for him. :(
Christmas, Alexander caught a little stomach bug, that resulted in him vomitting on Christmas and the day after Christmas.
Then on January 16th, Alexander woke up not seeming like himself. My motherly instinct knew that something was just not right, but everything appeared fine. His heart rate and oxygen satuarations were normal, he had no fever, or a cold. He wasn't interested in eating either. I knew something just was going on with him. I informed my mom about it, as it was a day she was coming to babysit while I went to work. Then at noon, I got a call from my mom that he had gotten sick while eating lunch. I had just finished up with a doctors appointment and had a few hours before I needed to go to work. When I returned home, he had just fallen asleep for his nap. My mom reported that he ate a little before looking tired and was ready for his nap. He slept for 5 minutes before waking up, smiling at me (he must have heard me come into his room). I stayed with him for a few minutes to see if he'd go back to sleep. He didn't. He then became a little agitated and whining. The whining increased and he began to show signs that he was going to vomit. We made it 2 feet from the bathroom before he got sick. So now he had gotten sick twice within 1.5 hours. Time to call cardiology and his pediatrician.
Alexander's pediatrician said keep him hydrated and posted on how he was doing. Cardiology said to not give him his 2 diuretics that night, keep him hydrated by offering him about an ounce of water every hour. She was very concerned because vomiting was the only thing going on; no fever or diarrhea. (She was started to think heart failure, as was I!). Fast forward to 2 hours later, he had gotten sick 3 more times. Cardiology was now thinking he needed to be admitted to the hospital due to dehydration. While dealing with a sick child, I had an appliance repair man coming to our house to have our dryer looked at. As he was ringing the door bell, Alexander began to vomit. The poor guy witnessed Alexander getting sick because our kitchen window looks out to the front door. My mom answered the door, warning him of the oxygen line he needed to step over in order to get into the laundry room, which is located next to the kitchen. As she's putting our hyper, happy, Jack Russell outside, I'm yelling at Alexander "breath, breath, breath" (his coloring was not good). He finally took a breath and vomited again. The repair guy asked what was wrong, I told him I believed that the motor was going out. He tried to start it, and I yelled "that's the noise", as I was trying to calm Alexander down and clean him up. He agreed, the motor was going out, gave me my receipt, told me that part would come in about 7-10 days and walked out! Hilarious at the time, as my mom and I needed a good laugh. Talk about timing!
So once he left, I realized that Alexander had begun to get sick every 15 minutes. He wasn't keeping any fluids down and was near passing out when he did vomit. How was I going to make the 45 minute drive to CHLA, with a child getting sick every 15 minutes? I decided to call 911. I did not want to go to the nearest hospital, as his heart condition is so complicated, that most doctors just aren't sure of how to handle it-especially when they see his sats aren't at 100%.
The paramedics arrived and said he had a fever (101.0). This was surprising to me because he didn't feel that warm and had been snuggled up with me after each event. The paramedics also informed that they couldn't take Alexander to CHLA because his breathing and heart rate were fine. So to the nearest hospital we went. 2 hours, with 3 attempts later Alexander got IV fluids. 4 hours after that, he was transpotrted by ambulance to CHLA.Thursday- Alexander slept a lot, as I did too, while Wes went to work and my mom came back down to the hospital to keep me company. By Thursday night, I wasn't feeling well and was driven back home, because I had come down with the same stomach bug as Alexander! While I was home, I learned my mom had gotten the stomach bug and then by Friday morning, Wes had gotten it! HORRIBLE STUFF! Thank GOODNESS for my mother in-law. She was so great to stay with Alexander on Friday and Saturday, and never got the bug. Alexander was discharged on Saturday night, January 20th. The anniversary date to the horrible night of Alexander's seizures and stroke. Before he was discharged, we learned that Alexander had tested positive for Norovirus and C-Diff. Both nasty, nasty, bugs.
So that was November, December, and January. We are now in February, preparing for CHD awareness week (2/8-2/12), our Superman's birthday (2/11), his momma's birthday (2/22), and Alexander starting preschool! He will be attending an SDC (Special Day Class) for children with otheropedic impairment and health issues. There are currently 4 kids in his class and he will be attending school 2-3 times a week for no more than 2 hours at a time. We are worried about germs with him but want him to get that academics that he striving for.
Given everything, he's doing fine. He has his ups and downs and behavorily, he's acting like a 2.5 year old would. He doesn't like the word "no", or "not now", wants to sing and play the samething 20 times a day, and is being picky with what he wants to eat. He's signing up a storm too! He's begun to put 2-4 signs together and when he doesn't know the sign for something he wants, he will describe it by signing the color. For example, one day he wanted a particular type of cracker that was in a blue box so he signed "blue cracker".We are very excited for him to be starting school soon, a little worried about him getting sick, and always on alert with him. We pray that the only "excitement" for this month is school and birthdays! He's had many follow up doctor appointments (3 in 2 weeks, and 3 next week), and we are hoping those all continue to give us positive news. One of those appointments is Cardiology.
I apologize for this post taking so long to be written but it has been a busy couple of months. I'm hoping that things begin to slow down, praying that Alexander continues to stay strong and healthy, that we have a few quite months, and that he does fantastic at school. Thanks for following us and Thank you to everyone that contributed to "Wear Red Day" for Heart Awareness Month on February 5th; wearing red in honor of Alexander and fellow heart warriors. <3
