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“He May Not Be Able to Keep Up With His Peers”

double aortic arch, vascular ring, g-tube, tubie, tube fed, heart defect

That phrase has been echoing through my head since Apollo’s visit to his cardiologist nearly two weeks ago. They are the words spoken by his pulmonologist six weeks after his first double aortic arch division“as he gets older he many not be able to keep up with his peers”. When you have a one year old recovering from heart surgery those words don’t sound too bad. In fact, they seem completely inconsequential.double aortic arch, vascular ring, g-tube, tubie, tube fed, heart defect

They sound very different when you have a three-year old who is often tired and cranky. A three-year old who is too tired to play at a playground or who lies on the couch crying because he’s tired. We still have no answers for his fatigue. Apollo’s blood work is perfect, his ECHO was perfect. We have increased his calories. And he is still tired much of the time. I can’t help but ask myself, “is this what the pulmonlogist meant when he said he many not be able to keep up with his peers?” I somehow pictured that as a kid who wasn’t going to be on the track or soccer team. Not a constantly sleep-deprived cranky toddler.double aortic arch, vascular ring, g-tube, tubie, tube fed, heart defect

Yesterday it was so bad I had to leave church with Apollo. We got to church and before the first song even began I took him out to hook him up to his pump for his morning feeding. I figured he could wear his pump backpack and get fed during the singing…instead he began to cry and cry and cry and fight his feeding, as is his new M.O. double aortic arch, vascular ring, g-tube, tubie, tube fed, heart defect

I took him to the “nursing mothers” room and hooked him up. He laid on my lap as I sang to him…after about ten minutes he fell asleep. Less than five minutes later he awoke crying and crying and crying. Saying he was tired. He was  hungry. He wanted to watch a movie. I went and told Chuck I needed to take him home. He was almost hysterical at this point. I grabbed Enoch from the service and drove them both home. Apollo fell asleep on the 20 minute drive. We transferred him to the couch and then I  turned around and drove back to church (were my family was now stranded- vanless). I arrived just in time for the closing song.double aortic arch, vascular ring, g-tube, tubie, tube fed, heart defect

It has been nearly two weeks since his visit to the cardiologist and we still haven’t been called to schedule an appointment with his pulmonologist. I will be calling the new pediatrician first thing tomorrow morning and making an appointment with her. We *cannot* go on the way we have the last few months. Since increasing Apollo’s feedings he is fighting nearly every tube feeding. I cannot, will not, “pin him down” and force a feeding on him. We have managed to avoid feeding power struggles for all three years of his life and don’t intend to start them now with tube feedings.

Saturday morning at the Cub Scout campout he played hard…and then crashed and slept for over three hours that afternoon. But he never seems to be “caught up” on his sleep. Every day is a struggle to get him fed (by mouth or tube) and we have no explanation for his frequent fatigue.

I plan to try to concentrate his tube feedings at night while he is sleeping and unaware. The doctors have suggested “overnight feeds” since he had the g-tube placed over a year ago. We have never attempted it since he doesn’t sleep through the night and is very restless; tossing and turning through the night. At this point, though, something has to change, so I am going to try this.

And for those of you who may wonder, without the tube feedings he will lose weight and with his damaged trachea, a lack of growth is not something we can take a chance on.

 

21 Comments

  1. Mali

    Has he ever had a sleep study? It sounds like the symptoms of sleep apnea, though with his complex medical history there are certainly a lot of factors.

  2. christina

    We do night feeds but when she only needs a top up and is fighting(as in last night) I hook her up asleep. She also is a restless sleeper we have port pods to attach the line to the mickey extension to prevent feeding the bed, I make sure is is pinned twice(the extension) to her shirt incase one comes out. They recomend 30 degree angle on the bed for night feeds which dont happen as she hates the bed at that angle(and latley is most in our bed) As for the pack at night she knows to not leave her room without it (we are getting a pole but it is not covered as the pmup can function without it)

  3. Michele P

    I am sorry I can offer nothing but prayers, but know that they are being lifted for you! I cannot imagine the struggle and the worry….

  4. Lisa G. in CT

    I, too, was wondering about sleep apnea, or something similar, maybe b/c of the damaged trachea…The restless sleep at night, the CONSTANT tiredness and crankiness – those are signs of sleep apnea, though as another commenter said, there must be a lot of factors. Also, if he would not actually sleep during a sleep study, would a CPAP machine be worth a try anyway? (Positive pressure as he sleeps – could it harm him if he DOESN’T have typical sleep apnea, or no sleep apnea?) Just some thoughts…and as always, you and family are in my prayers..

  5. Erin Q

    I’m so sorry your family is going through this. Especially after everything else, this must be incredibly frustrating. I just wanted to echo the comments about sleep apnea. Lainey has a small airway and severe asthma, and was recently diagnosed with mild to moderate sleep apnea. Apollo’s symptoms sound like extreme versions of her symptoms. They just removed her tonsils and adenoids to hopefully open her airway enough that she can go without the CPAP, but we’ll have to do another sleep study to see if it helped. With Apollo’s airway issues, and his array of symptoms, it sounds like some sort of sleep apnea may be taking place (in my completely unprofessional opinion of course!).

  6. Melissa

    What’s the calorie ratio on his formula? Maybe he could take less formula, but one with more calories. My son also used Benecalorie packs when he was on his feeding tube. It was a great way to power pack the few liquids he could take orally.

    Melissa

  7. sandra

    Did you ever hear of adrenal fatigue? It is something I suffer from due to living with a child who has severe RAD. I feel exactly like you described Apollo …. tired, never caught up on my sleep but not able to sleep until I am caught up. Could it be with all the trauma Apollo experienced in his life that his Adrenal reserves are depleted? This might be a long shot but I know how desperate one can feel when trying to figure out “what is wrong.”

  8. Robyn

    Some good ideas from other posters here. My thoughts and prayers are with you and Apollo. I hope you are able to find some solutions. You’re such good parents.

  9. Stacy B

    The allergy route and sleep apnea route is what I’m thinking as well. I am planning on having a mold assessment done in our home because of some water/condensation issues. I was reading that some of the symptoms of mold reaction are energy drain, irritations of the eyes, nose throat and lungs. I’ve been noticing a lingering deep cough that Austin has and I am always congested and always tired when home same with hubby. Maybe a home mold air quality assessment might be a good idea.

  10. Mariesa

    I was going to suggest a sleep study but see that others have already done that. It is something to be looked at. Has he had a EEG? To see if he is having seizure? You might not even notice it but that is something to look into also, seizure could account for his exhaustion.

  11. Nicole

    My heart aches for you my friend and for your little trooper!

    Lord Jesus I cry out to you! Reveal the mystery of Apollo’s fatigue. Thank You that You are with them every hard step of the way. With the answers send your peace and rest. Our hope is in you Lord!!! AMEN!

  12. Katie

    I obviously have no clue what’s wrong. I know you have probably researched till your eyes bleed. But I was wondering if you have considered adrenal fatigue. That sweet little bit has had to ensure so much stress and trauma. Which directly affects your adrenals. This makes ones constantly tired and can ironically make it hard to sleep. We have a child that was chronically tired, but could rarely sleep. The MD thought I was crazy when I asked if it could be.something internal. So we went to an Alternative health clinic. They diagnosed wake adrenal glands. Once we began supplementing

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