Apollo {25 Months}

posted in: Apollo, Special Needs | 18

Apollo is such a little talker! He’s been cracking us up lately with his thoughts. The first words out of his mouth this morning, as he rolled over in bed with me, were “Oh! You not Mario Bro, you Mama.

The other day Kalina took a small toy from him and said, “No, Apollo, you can’t have that. It’s a choking hazard”. He spent the next five minutes crying and screaming, “I want choking hazard! I want choking hazard!” Chuck and I were about dying laughing.

Apollo loves swimming, baths and showers, but hates getting his hair washed. The other day as I gently rubbed shampoo into his hair he yelled, “Stop! You hurting my tangles“.

A couple of weeks ago Apollo was furiously rubbing his nose and whining a bit. I asked him if his nose hurt and he said, “Yes, a crock-a-dile ate my nose!” I didn’t even know he knew the work crocodile.

I just received in the mail a written report from our visit to his cardiologist August 7. There is something about reading the cold clinical reports about Apollo that always cuts through me like a knife. Is it that the doctors try to sugar-coat it a bit when were in? Or is it the sterile words they use that are so hard to digest? I’m not sure, but either way now I can give you a few more details about his condition.

The report starts out by stating that Apollo was readmitted in April “due to failure to thrive“. Unless you’re mom whose child has been diagnosed with this, it’s a bit hard to describe how horrible it feels. Don’t we all strive to have happy, healthy, thriving children?

I suppose the most striking part of the report is his blood pressure. I mentioned before that we knew something was up when the nurse took his blood pressure at each one of his extremities. Apollo’s heart function has always been great, so I didn’t really pay any attention to the numbers at the time. His right arm had a blood pressure of 102/57 and his left arm 75/57. His right leg 106/57 and his left leg 117/65.  Notice the huge difference is the pressure between his right and left arms. And you can see the difference also correlates in the right and left sides of  his body…

So what does this mean? It confirmed our cardiologist’s findings in the CT scan…Apollo’s left subclavian artery doesn’t function. In his medical report he calls it an “acquired discontinuity of his left subclavian artery“. Acquired as in, it worked before and now it doesn’t.

This was, as Chuck put it, a huge bombshell. We went into that appointment anticipating a conversation about what is compressing Apollo’s esophagus….never dreaming something else was wrong…The expectation of every doctor we talked to was that Apollo would be fine after his double aortic arch division. I specifically asked at his post-surgery visit and was told, “Apollo’s heart is now considered repaired”. The cardiologist anticipated a visit at six and twelve months post-surgery and that was it.

The loss of his left subclavian artery is a huge blow. In discussing it with a (former) doctor friend he gave us a bit more insight. Not only is Apollo at risk of losing the use of his left arm as he gets older, but if he is supplying the blood to that arm by going up through his neck and head, he will also be depriving that side of his brain of blood and oxygen.

We have a pulse ox monitor here at home and his left arm is receiving significantly less oxygen than his right. His right ranges anywhere from 96-98%…his left we’ve measured as low as 88 (defined as mild hypoxia) to 94%.

Apollo is now considered a lifelong cardiology patient.

His report goes on to say, “Given the scarring from the initial procedure, a repeat operation will have unquantifiable, but incremental risk for possible complications…and include but are not limited to thoracic duct injury and recurrent laryngeal nerve injury. Symptomatic improvement from the potential operation cannot be clearly predicted as well.” He is described as having “complex post-surgical anatomy and physiology“.

In other words, the doctors don’t know how his blood is flowing through his arm, what happened to his left subclavian artery, what is causing the compression to his esophagus or what his future holds.

I can tell you that Chuck and I will be requesting more testing, likely in the form of an MRI and perhaps cardiac catheterization. I hate the thought of putting Apollo through more tests, but at this point, because he is at risk of losing function in his body (and developing subclavian steal syndrome), and the doctors don’t know what is going on, we feel it is necessary.

Apollo has four appointments down at Children’s on September 11 and one of those is with his cardiologist. He scheduled us for 75 minutes just to discuss Apollo’s condition. Apollo gets his Mic-Key (the new, smaller tube) place September 17th.

All thoughts and prayers are appreciated.

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18 Responses

  1. Rebecca

    Just keep moving forward. Seems you have no choice on limiting testing and surgeries for a while, and he’ll get through it. Always thinking of you guys and hoping his smaller button will be a little easier to handle, little things add up and help! My Dad has had well over a dozen major heart surgeries where they give you those grim words and warnings. It’s so awful to see them written, way worse than hearing them for some reason!

  2. Kimberly

    I laughed so hard at the “choking hazard” comment that I scared someone in the next room at my office. So sorry that things aren’t going smoothly with Apollo. He is blessed to have you as parents, and you are doing a great job fighting for him. Prayers are coming to you all from Kentucky!

  3. Kristal

    He is quite spunky with his language… you’ll have to keep writing all those down.

    Praying… it’s all I can say. Just praying.

  4. cecily spencer

    sometimes with special needs kids it’s like the appointments mate and reproduce… you go in for one appointment and come out with three. I love how you are keeping him a kid first and formost. That is hard to do, he is not his diognosis. Sounds like testing is the best option the more info you have the better. There is a saying God qualifies who he calls, you were called to be Apollo’s parents and you will be given what you need to do the job. I know this is so hard but The Lord often gives us more than we can handle so we turn to him even more. Praying for you and your family Cecily Spencer

  5. Cindy

    Wow. Just wow. Your right. Reading it is harder, and i’ve never even met him. Can’t imagine what it’s like for you. Apollo and your family have been through so much, I am sure you are ready for a time of peace. but I am so thankful that Apollo has parents who will keep on looking for the best answers for him even when you must be discouraged/exhausted. Praying that you will learn more on the 11th.

  6. sarah

    In todays day and age, I expect the medical community to be able to handle this with no problem. Society seems to be so advanced that it is shocking to hear it is not. I mean isn’t that why we go to the doctor, so he can “magically” fix it?? I am so sorry there isn’t a solution right now. I will keep praying…

  7. Michele P

    You have our continual prayers! Keep your eyes on Jesus and He will give you strength for each day. One day at a time, right!? Many hugs from our family to yours!

  8. Corrie

    He is such an adorable, sweet treasure. Our daughter is just about the same age (7/9/10). It is so cute to read about his toddler-isms.

    I’m so glad you are his parents. God has certainly given him ones that will fight for him no matter what. Good job.

  9. Heather B

    Geez will this kid ever get a break?!?! Probably a really stupid question, but why can’t they just put dye in and then see where it goes to find out how the blood is traveling to his arm? Seems like it would be a priority to discover this as depriving the brain of blood would be a thing that needs fixing…also it would be nice to keep a functioning arm throughout life.

    • bakersdozenandapolloxiv

      They can, but that requires fluoroscopy which will expose him to more radiation. BUT, we want some answers, so I think we will be requesting that.

      • Heather B

        After I wrote that I thought about the radiation accumulation. It really stinks that everything is such a trade off and it’s really hard to know you’ve made the right choice. But in my opinion I think you’d be totally justified in opting for the tests. Good Luck!! Maybe for once he’ll end up with an easy fix. ha ha, I know so silly to think it’s a possibility with this little guy.

  10. Sally

    Yes, on the fact reading reports is harder.

    Yes, on the fact reading ‘Failure to Thrive’ is a gut punch.

    Apollo’s comments are so cute, i love the choking hazard complaint. 🙂

  11. Victoria

    Arriving to the comments a little later, after an “I just don’t know what to say” moment….

    Such gorgeous photos….what a cutie….and those quotes are super cool. Just what we are loving with our 2.5 year old these days…

    …and perhaps that is the answer to my not knowing what to say….he has been waking up scared of ogres….we’ve prayed and fought them pretending we are “knights”! and now he wakes up and says “God’s looking after us, isn’t he?”

    So, my comment will be that it really is gut wrenching to read this post….I cannot imagine the turmoil in your minds. Here I will still pray for a miracle, answers, and that you will know deeply that “God is looking after you” even when it may feel that he is somehow missing.

    Much love and God bless you all xxxx

    • bakersdozenandapolloxiv

      Victoria- Thank you for commenting! Those were wonderful, encouraging words to hear. God is indeed looking after us.

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