Apollo’s Beads of Courage

posted in: Apollo, Special Needs | 18

double  aortic arch, vascular ring, tubie, tube fed, g-tube, large family, beads of courage

The weather here has taken a definite turn toward fall. I decided it was now or never to get new photos of Apollo with his Beads of Courage. Each bead has a different meaning and signifies a different medical treatment.double  aortic arch, vascular ring, tubie, tube fed, g-tube, large family, beads of courage

Yellow are for nights spent in the hospital. Blue are clinic visits. The white squares with hearts are for (you guessed it) heart surgery. He loves his beads and he loves for us to tell him what each on means. Seattle Children’s Hospital doesn’t participate in the Beads of Courage program so Apollo is enrolled in their Beads from a Distance program.

double aortic arch, vascular ring, tubie, tube fed, g-tube, large family, beads of courage

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

Thank you for all the comments regarding Apollo and possible sleep apnea. He has had a sleep study. It was done last April when he was admitted to Seattle Children’s Hospital for various tests. In my opinion the study was completely worthless. After hooking Apollo up to the dozens of wires and wrapping his head like a mummy (in addition to the pulse ox and IV he was already hooked up to) they expected him to fall asleep. It took literally hours for him to fall asleep. He then awoke crying so frequently that Chuck ended up spending the whole night sitting up in a rocking chair and holding Apollo in his arms.

The results? Apollo had borderline or mild sleep apnea, but nothing worth treating. Personally I thought it was ridiculous to come up with that after a night when he obviously never got into a deep sleep and certainly isn’t representative to a night’s sleep at home. I know he has apnea at times because I can hear him stop breathing. I don’t think there would be any way to keep him hooked up to a cpap machine at this age, anyway.

Regardless, he has an appointment with his pediatrician this afternoon and we will certainly be discussing his sleep.

 

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18 Responses

  1. What a little warrior he is! Wonderful images!

  2. Thank you for writing about the program when you first joined. My daughter was on a waiting list and I just received an email that she is now enrolled. I can’t wait to figure out what beads she gets and give them to her. Tangible is really helpful to her.

    • bakersdozenandapolloxiv

      Elizabeth- that is so exciting! Now I’m off to check out your blog to see what her medical issues are 🙂

  3. I know the tale of the lost shoe is from last week , but I have another prodigal item’s triumphant return to share. My 4 yo grand-daughter’s glasses disappeared about 2 weeks ago. We had searched under beds, couches, and bookshelves. Last night, her Mama was helping clean up after a birthday party and she decided to fold up the play-pen to give us more space in the living room. She folded it up, then shook out the mattress. You guessed it! The glasses fell to the floor. The 4 yo is clearly not using the playpen, so how did the glasses get underneath the mattress? I probably don’t want to know!

    • bakersdozenandapolloxiv

      Nice…thanks for sharing. It’s nice to know I’m not alone 🙂

  4. Owen was on the waiting list for Beads of Courage and we just got notice that he is now enrolled too. I just placed our first order, I can’t wait for them to come. This is actually the perfect time with just starting the ketogenic diet and all the demands of that for him.

    • bakersdozenandapolloxiv

      YAY! Apollo was one of the last kids to get into the distance program before they temporarily shut it down. I am so happy for him and I know Apollo will love to see Owen’s beads.

  5. Yeah, even if he did have sleep apnea, it would be almost impossible to use a C-PAP on him. I’ve used one for 8 years and still have trouble with it. Something that might help, is raise the head of his bed just a little, maybe a brick under the legs. A few times I”ve had a cold and unable to use my C-PAP, I slept in our recliner with my upper body slightly raised and that worked pretty good.

    • bakersdozenandapolloxiv

      We can’t elevate his bed; he literally tosses and turns all night long. When they have elevated his bed in the hospital, he constantly rolls down.

  6. Hay there, just a thought, does Apollo have his tonsils still? You probably know that they could cause the sleep apnea if enlarged and issues with eating too, gagging and choking. I understand Apollo has bigger stuff going on than that but thought id mention it as that is now Daisys troubles. X x

    • bakersdozenandapolloxiv

      Tonsils, yes, adenoids, no. The pediatrician wants him to go see his ENT about his tonsils.

  7. cecily spencer

    My heart just prays for you and your family. I know that pictures can’t show it all but he is so loved and he seems to be a HAPPY little boy in spite of it. I hope you take a moment and pat yourself on the back. There is so much right in his life. I remember seeing kids in the hospital who almost never had family with them and he is always surrounded by your love and his sibs love. I wonder what your thoughts are on the role of adversity in Heavenly Fathers plan?

  8. Hope you’re not tired of sleep apnea comments: have his adenoids been checked? My daughter had hers out twice (they grow back). The docs wanted to take them out a third time and I said forget it and decided to go for what I had previously thought of as the lunatic fringe–alternative medicine in the form of Traditional Chinese Medicine. They looked her over, tongue and pulse, gave her acupuncture and a medicine that had chrysanthemum in it.
    No more problems with adenoids! And a good night’s sleep was had by all.

    • bakersdozenandapolloxiv

      His adenoids were removed in December 2011 (though I know they can sometimes grow back). The pediatrician said his tonsils are large and wants him to go see his ENT, but I doubt he will want to take them out.

  9. I know he has already been through so much, but actually for his age, CPAP is not the first treatment for sleep apnea. Removal of the tonsils is. My friend’s son who is three, had a sleep study, showed sleep apnea and had his tonsils removed. Little guy finally sleeps!!

    • bakersdozenandapolloxiv

      Lisa- I know it is not the first treatment, I just commented on it because so many people mentioned it. Apollo had his adenoids removed in 2011 and his pediatrician wants his tonsils evaluated by his ENT.

  10. Hey, there is actually an app that is connected to a monitor you wrap around an infant’s foot to make sure they are ok via your smart phone. So perhaps that would be useful to you or adaptable 🙂

    • bakersdozenandapolloxiv

      Thanks for the info! We just survived his third sleep study, and now surgery is schedule. I will definitely check into this in the future.

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