Tuesday, April 7, 2015


Hello sweet friends!

I just wanted to do a quick update for you ladies about Jaxon. He is doing so much better since being hospitalized and sick last weekend! Thank you for all your prayers, not a single one was wasted. A lot of people were asking what happened after I posted on Instagram about switching pediatricians so I figured I would just tell everyone here. I am in NO way trying to put down or throw anyone under the bus I am simply just stating facts and what happened to my son. 

So I noticed Jax was getting a cold on a Wednesday. By the next day, Thursday, He was coughing like a chain smoker and had so much mucus. I was really concerned so I called my pediatricians office but she wasnt in that day so I saw one of the other pediatricians in the practice. He saw my son, listened to his chest and told me he could hear crackling in his left lung. He told me he was going to put Jax on antibiotics and sent me home and told me to make an appointment for Jax to be seen the next day with his doctor. So I picked up the prescription and made an appointment. 

He wasn't doing much better by Friday so when I went in to see his doctor I explained this. They told me he had pneumonia. She told me to come in Saturday morning to be seen again to closely monitor him. I came in the next day and they gave Jax breathing a treatment and also sent us home with a machine so we could do it a couple times a day at home. Now at this point, not only was Jax still sick (but getting better) he started not eating and having intense diarrhea. I thought nothing of it until I realized he had thrush on his bum and in his mouth (caused by the antibiotic) by Saturday night he wasn't eating barely at all, he seemed like he was in so much pain, in his stomach. I felt really funny about it. I called his pediatrician and told her all his symptoms and she said that it was side affects from the medicine he was on and was going to switch him to a different antibiotic.
Sunday, we picked up the other antibiotic and gave Jax a dose and then he puked. We gave him another, he puked again. He wasn't eating and anything he was eating he threw up. I felt like he was getting dehydrated so I made a decision to stop giving him antibiotics and take him to the ER. He was miserable and I could not get him to stop crying. Its probably THE worst feeling as a mom when your child is sick and in pain and there is NOTHING you can do to console them! 

When we got to the ER that night it was beyond packed and busy but I knew he needed to be seen. He finally got seen and they said they felt comfortable sending him home after they did an Xray and saw he didn't have penmounia at all but something viral. He didn't even need the antibiotic and they said that because he was misdiagnosed that he actually got sick from taking the antibiotic. I guess it can kill all the bacteria in your gut, even the good kind. I knew his stomach was upset even though he couldn't tell me. You just know as a mom. It was so frustrating. We went home and by Monday he still wasn't doing well so long story short I took him back to the ER they admitted him for observation and told us he would need a few weeks to get back to himself. 

I was so discouraged. As a mom you count on your pediatrican to know what is going on with your child. Jax is special, he needs close care and they just weren't doing that for him. They were all so nice but they didn't seem to understand that my son has a terminal illness and he doesn't need to be any sicker than he already is, thank you very much! I made the decision with my husband to switch doctors and we are so thrilled with our new pediatrician. A child in her practice actually has Niemann-Pick Type C. Obviously its very different than Type A, but it has enough similarities that she gets it. We also know her nurse and I am very comfortable knowing that she is awesome and knows a lot so I know she wouldn't be working for a doctor that she wouldn't take her own children to. 

I can't say this enough, USE YOUR MOMMY INSTINCTS. If you feel like something is wrong or you are uncomfortable with it say NO, or ask more questions. As a new mom I am learning this slowly but surely. I have a right to say no and I have a right to ask questions without feeling dumb or like a psycho mom. I am so happy that I finally found my voice, I am Jaxon's voice and he counts on Mark and I to speak up for him. Knowing what I know now I wish I could go back in time and change who we saw from the very beginning. But I can't and all bad experiences I had helped me grow as a mom and I am thankful for them in some aspects. 

Thank you all for reading and for caring about my family and I. It means so much to know I have people all around me supporting our journey. This mom gig is NO joke and I have such a respect for all you mommies. You all rock! I am so inspired by moms who can speak up and take charge. Its such a blessing that I can follow along with so many "mommy bloggers" and my mommy friends. You all give me such encouragement and I love you all! Thank you so much :) 

XOXO. Tori

Post a Comment