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Update on Apollo {August 2013}

{All photos taken with my iPhone}g-tube, double aortic arch, vascular ring, seattle children's hospital, large family, large family blog

Thursday Apollo had an appointment with at Seattle Children’s Hospital to see his cardiologist and get an ECHO of his heart due to his new symptoms that have developed this summer. He has been very tired, not gaining weight, complaining of chest pain and has a new murmur.

Unfortunately, before we even left Bellingham, Apollo said he needed to throw up. Kalina had been up the previous night vomiting, but Apollo just throws up sometimes. It kind of comes with the territory of his feeding issues. He spit into container a bit, but didn’t actually vomit…until we hooked him up to his feeding pump. Hoping this was just an isolated incident, we unhooked him and kept driving south. By the time we reached Seattle it was clear he was sick. We stopped at a store only about five minutes from the hospital where Chuck ran in for emergency supplies while I called the hospital to tell them about Apollo. They have a very strict policy about bringing sick kids in for clinic visits (ironic, huh?) so I was sure they were going to tell us to come another day.

g-tube, double aortic arch, vascular ring, seattle children's hospital, large family, large family blog

Instead, I was told to leave Apollo in the van with Chuck, go register him and have the registration desk call back to the nurses. They eventually decided to keep his appointment because his vomiting was not accompanied by a fever. Everyone who came in contact with him donned their isolation precaution gowns and gloves and Apollo wore a toddler sized mask.

{And by the way, I am totally fine with the hospital’s policy on sick kids. I know what it is like to see a kids coughing with a runny nose and being terrified Apollo is going to get sick from them.}

The conclusion is, he has not one but two new heart murmurs, neither of which are concerning and his ECHO came out perfect.  He had a full blood workup recently, which came back perfect as well. His cardiologist believes his symptoms are respiratory rather than stemming from his heart. This is good news, but still leaves us with a  three-year old who cannot maintain his weight without his g-tube and who is still tired much of the time. I don’t like the idea of his current symptoms being caused by a narrow airway, because that means things are getting worse, not better. Next up is an appointment with his pulmonologist. We are waiting for a call from the hospital for that.g-tube, double aortic arch, vascular ring, seattle children's hospital, large family, large family blog

Apollo isn’t scheduled for any follow-up on his heart, which is frustrating. In March 2012 we were told his heart was repaired and after a visit or two he wouldn’t need follow-up. Then in August as the cardiologist described the complications from his first double aortic arch division we were told he would need to be followed closely for the rest of his life. Now, no follow-up? I guess because we got it repaired in Texas? It is just so confusing when you never get the same answer twice.

Apollo, thankfully, didn’t vomit in the hospital at all. He fell asleep before his ECHO, then awoke and enjoyed watching Mickey Mouse on the TV while his ECHO was taking place. He was having so much fun in fact, he wasn’t happy when it was over. He was sent for a chest x-ray (just to rule out any issues from his chylothorax) and then we headed to the vending machines where he picked out these two candy bars. Hey, if you had just traveled a hundred miles with a vomiting, crying toddler, you might just buy him two candy bars to make him happy too…g-tube, double aortic arch, vascular ring, seattle children's hospital, large family, large family blog

Before we even pulled out of the hospital parking lot, Apollo’s vomiting started again. I sat in the back with my vomit station set up. Not pictured are the: garbage bags, baby wipes, paper towels and soiled clothing. Thankfully, he fell asleep and slept the rest of the way home. By afternoon he was fine.

And by that night, several more of us were sick.

9 Comments

  1. Ruth

    Not fun at all! We have a tummy bug here right now too. It started with Sam. It is the fastest bug I have ever seen! Only lasting several hours.

  2. RaD

    Oy! I hope it’s just that twelve hour bug that swept through kids camp this year. One sick (who didn’t get sick until the second night) got several other kids sick including my own. Thankfully, it was quick and fast and they started feeling better overnight, or in our case, in the afternoon, since they were sick in the middle of the night.

  3. Suze

    I pray that the vomits are over soon. It is so draining to have one after the other ill. God bless you all and watch over Apollo with his special love.

  4. Kelly

    I think it might be the case of he will have follow up anytime his pediatrician or you all find it necessary? If I were you I’d talk to his pediatrician about what they feel comfortable managing with his care, and what they want a specialist to handle. Different doctors have differing levels of comfort with complicated medical issue. It’s awesome that his murmurs aren’t causing problems though. Maybe he has some allergies? I know even children with no respiratory problems can sometimes develop asthma or whatnot as they get older, or they can have an allergic trigger. They tend to have problems gaining weight too because all their calories are getting consumed by the extra work they are spending to breathe. I’m not sure about if Apollo already has had a pulmonary function test, or if he even needs one, but it’ll be interesting to see if his pulmonologist has some ideas for him.

    • bakersdozenandapolloxiv

      Well, we just picked that up at the grocery store…not time to make it or search out special ingredients. We had no idea he was sick when we left.

  5. C

    Is there a reason Apollo doesn’t have a non-clinic pediatric cardiologist? I mean, someone like your pediatrician that is dedicated to his care, to followup, to everything in conjunction with the clinic visits?

    Clinic visits are important but finding a pediatric cardiologist that has their own practice, their own office, etc. is important. That way, you can have someone who has his files from all the others he’s seen and that he can visit bi-yearly or yearly (or less depending on what they conclude) and someone you can consult with over the phone or in-office when concerns such as these arise without having to go through all that you must ay seattle.

    The visits to seattle are important but finding a personal pediatric cardiologist who can form a connection with you and Apollo is important. Many pediatric cardiologists have their own echo tech too.

    • bakersdozenandapolloxiv

      There are no pediatric cardiologists in our city and the only ones I’ve heard of in Seattle work for the hospital, but I could be wrong about that.

  6. Michele P

    Praying you all have since recovered from the stomach bug! Yuck, what bad timing. What a praise that you all have such deedicated doctors who are working with you to keep that awesome kiddo of yours as healthy as they can! I am sorry it is such a difficult journey. If I could, I would love to introduce you to a friend whose child has some health issues as well…her blog is called Crazy, Messy Love. I have this feeling you two would be good friends. She is an amazing mom like you, searching for medical answers and trying to educate people among the way.

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