Update (June 23 – July 7th) – Part 1

Evan was admitted back in the hospital earlier this week. I started this blog not only to keep family and friends updated but to also help other families in similar situations so I feel it is important for everyone to understand what brought us back in and where we are now. If you are new to the blog please take some time to read old posts to get a better understanding of our journey. If you haven’t already please follow the blog using your email address so you are automatically updated when we post. Lastly, if you have an iPhone or other apple device – there is a wordpress app for that!

The last time I posted we were headed to the cardiologist. His appointment went ok – the pressures on the right side of his heart were still elevated and his x-ray’s showed minimal pleural effusions (fluid on the lungs) as well as atelectasis (I love saying atelectasis). Our lungs are composed of air sacs called alveoli and these sacs can become collapsed if there is not enough air passing through them resulting in atelectasis. Atelectasis is common after surgery and being on the ventilator but it should have resolved by now so the cardiologist wanted us to see a pulmonologist. The thought was once the lung issues are resolved the pressures in the right side of his heart should decrease. We had an appointment with the pulmonologist on Wednesday and he agreed we need to aggressively treat the atelectasis (told you I liked saying that word) and prescribed Albuterol and QVAR which are also used into he treatment of asthma; Cameron is on the exact same medicine. The Albuterol relaxes the muscles in the lungs which in turns increases the airflow to the lungs. QVAR is a steroid and essentially keeps the airway relaxed. Albuterol is used as a rescue inhaler because it works immediately in resolving symptoms. They also prescribed Chest PT on a daily basis. They taught me how to do the Chest PT there in the office; add Respiratory Therapist to my name. The Albuterol was prescribed two times a day (morning and night) and is given through a spacer which is a little mask that delivers the medicine.

In the meantime, Evan’s appetite still hadn’t picked up back up to his normal levels. He was eating but not as much as he was spitting up more than often. It is not uncommon for children after heart surgery to develop reflux and it is also common in children with Trisomy 21. I took him to the pediatrician the Friday after his immunizations because I didn’t feel he was eating enough but he had picked up a. little weight and was still peeing and pooping so she couldn’t find anything wrong so I was to watch him over the weekend for any signs of dehydration and call if anything changed. We had a pretty good weekend but Monday (6/30) he started not feeding well again so I called the pediatrician and told her he looked like he had reflux. I had terrible reflux with him when I was pregnant (I paid the price for all of that beautiful hair on his head).EVan looked like he wanted to eat but as soon as he took a couple sips of milk he would look like he was in pain and not drink as much so she prescribed Zantac and after a couple of doses it seemed to help and he was eating more and spitting up less which last a couple days until Sunday(7/6) when it started to drop off again. I gave him pedialyte in order to keep him hydrated and to take his medicine and first thing Monday (7/7) I called and made him an appointment with the Gastroenterology department to see if there were upper GI issues that were preventing him to eat. I also called his cardiologist and explained what was going on and she was happy to hear about our upcoming appointment but didn’t feel it was heart related. On Sunday night his monitor also went off for a low heart rate which had never happened before. Several times it was because the monitor wasn’t picking up but the others were real which concerned me. She also said that the heart rate can dip during sleep (which he was) and as long as it came back up (which it did) she wasn’t too concerned and told me to keep our GI appointment. I debated bring him to the ER on Monday but after talking to her and he had pretty good feeds all day I didn’t take him. Early Tuesday morning his monitor started beeping again but this time it was for his oxygen levels which were going below 88 even with the blow-by but they came back up immediately. After I tried giving him his first bottle and he threw it up I made the decision that we were going to the emergency room. I was not willing to wait until Wednesday for his GI appointment and I knew something else was going on with the desats. My mommy intuition was heightened. My intuition had been there all along and I had been in contact with the pediatrician, cardiologist and pulmonologist but on Tuesday my instinct told me it was time to take it to another level and I know longer liked the answers they were giving me.

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6 thoughts on “Update (June 23 – July 7th) – Part 1

  1. Amber says:

    U r so amazing Ki!!! I mean a strong, beautiful & intelligent woman. I love you, Evan & the rest of your beautiful family. I’m so sorry that Ev is going back to surgery but God is the surgeon & we trust him. In Jesus name. Love you all very much.

  2. Zennee says:

    But God….love it! He is our healer, strength, and provider!

    Let me know if you need anything. Love you guys!

  3. Sheila Johns says:

    Now you understand
    Just why my head’s not bowed.
    I don’t shout or jump about
    Or have to talk real loud.
    When you see me passing,
    It ought to make you proud.
    I say,
    It’s in the click of my heels,
    The bend of my hair,
    the palm of my hand,
    The need for my care.
    ’Cause I’m a woman
    Phenomenally.
    Phenomenal woman,
    That’s KIKI!

    As a mother, I can only imagine what you are feeling… Your strength is to be admired! You and Ryan have beautiful spirits and I felt that immediately when I met the both of you…. God will see you through this season and what a marvelous testimony you will have when it is over. We know that God does not make not ONE mistake and in that we will see our Evan grow up and become a strong, healthy wonderful man! I love you all and I am at your convenience for ANYTHING THAT YOU NEED!

  4. marylou Holliday says:

    Too (my nickname for Kiki) Which is short for TooSweet. You are one of Gods Earth Angels. Your intuition will never tell you wrong.God is on Evans side. Which includes all who love him. Many people are praying for him and God answers all prayers.

  5. Pam says:

    Psalms 125:1 vs1. Those who trust in the Lord are steady as Mount Zion, unmoved by any circumstance. vs 2. Just as the mountains surround and protect Jerusalem, so the Lord surrounds and protects his people.

  6. Diana says:

    Continue to use the tools that God has provided you. “Instinct”. Remember he will guide you and your family and is always there for you! We are thinking about you and your family all the time.

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