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Apollo’s Paintings

Sweet Apollo, painting with watercolors for the first time.

In bed this morning, Apollo wedged between us, I said to Chuck, “It’s been six months since Apollo’s heart surgery and four months since his g-tube was placed“.

Apollo immediately sat up and said, “No! You not say heart surgery. Heart surgery all done!

It nearly broke my heart to hear him say that.

If all was well, his heart surgery would be “all done”. But as his medical records state in cold, unfeeling terms, Apollo has a “complex post-surgical anatomy and physiology” some of which the doctors don’t even understand.

September 11th, we return to Children’s to meet with Apollo’s cardiologist once again. That same day he also has a visit with his pulmonologist and will been seen in the PASS clinic (Pre-Anethesesia Surgical Service) in preparation for his new g-tube.

September 17th, he gets his smaller g-tube placed. I am dreading the procedure (which is done by endoscopy, not surgically). Apollo is old enough to remember having had surgery in the past. He knows not being fed or nursed in the morning before an appointment means surgery. He knows all about IV’s and hospital gowns and ID bracelets. He knows about the pain after waking up after surgery. Every procedure he’s had this year (with exception of the original MRI) has led to fever and trouble breathing afterwards.

On the other hand, I am looking forward to the smaller mic-key style g-tube. I’ll no longer have to worry about the tube being yanked on or ripped out. Apollo will no longer come toddling up saying, “My tube hanging out” looking for someone to fix it.

We also have some very special visitors from New Zealand scheduled to arrived, you guessed it: September 17th. Chuck and I will be in Seattle, so my parents will be here to greet our guests, along with a houseful of energetic children. If our post-surgery chaos doesn’t scare them away, I suppose nothing will.

On a positive note, Apollo’s life is so much better now with the g-tube. He is no longer hungry all the time. He knows what it is to be satisfied after a meal. He doesn’t need to stop eating because his esophagus is clogged up or he’s too tired to force anymore food past the compression.

He has many, many more moments of running and playing with gusto. He has to slow down frequently because he is short of breath, but he has the energy to play again.

He is also sleeping better than he ever has in his life. He now regularly sleeps until 2, 3 or 4 in the morning. That means a stretch of 4-6 hours. We are also beginning to be able to have him fall asleep in his bed again. It requires melatonin and someone lying with him, but it’s an improvement over six months ago.

{Edited to clarify that his upcoming procedure is done by endoscopy}



  1. Kate

    Love the pictures and the good news, so very sorry about the sad things. On the bright side, switching out a g-tube is beyond fast and easy. You are VERY blessed that they are sedating him as in most facilities this is done in the doctor’s office with no sedation (multiple adults pinning the child down as needed). I learned very quickly to ask about tube changes every time Noah would be having surgery and would have the doctors change the tube while he was under. I imagine the new tube will be a balloon style and you will do future changes at home. It takes 2-3 minutes and is very, very easy. Many children do them themselves by the time they are 8 or 9 or so! Maybe you can just reassure Apollo that this isn’t actual surgery – that they are going to put in a new, better, big-boy tube and that he’s soooo lucky that he gets to sleep through it! We’ve used that approach for sedated procedures with Noah – explaining that it would be an ouchie if he were awake but since he gets to go to sleep, he won’t have an ouchie! He really should have no pain whatsoever when he wakes up. (((((hug)))))

    • bakersdozenandapolloxiv

      Hmm…I’m not sure what kind of tube your son had, but Apollo currently has a PEG so it has to be removed surgically. I know the mic-key can just be put in, but he has to be out to remove the current tube. The disk in his stomach has to be pulled out of his esophagus.

      • Kate

        A PEG converting to a Mic-key button is not surgery. It is an endoscopic procedure. There is no scalpel involved and there won’t be pain when your child wakes up.

        I have 3 kids who have g-tubes and am therefore very familiar with PEGs and Mic-keys.

        I agree with Kate E. A child will pick up on a parent’s anxiety/apprehension. If you can keep yourself calm and approach the procedure like it’s not a big deal, your child will respond similarly. Again, I am speaking from experience. Many of my children have had surgeries (brain, spinal cord, nasal, placement of PEG tubes, open-heart) and regardless of their age or level of functioning, every single one of them has been fine going into surgery because they look to me to decide if there is any reason to be worried. I present a calm front & they trust that it’s going to be okay. I assure them they’ll be fine and act like it’s no big deal ~ regardless of what kind of surgery it is. And honestly, over the years, I’ve learned perspective. Reading the blogs of other families whose children are going through WAY more than my child has also been a way to help me gain & keep perspective through the years. Keeping perspective aids in keeping me from over-reacting to things that really aren’t a big deal in the grand scheme of life.

        Best wishes for you and Apollo. Sincerely.

      • bakersdozenandapolloxiv

        Kate- Good point. You’re right, it’s an endoscopic procedure this time, no incisions (I think I’ll edit that in the post for clarity). I don’t expect him to have pain from the removal of the PEG and placement of the mic-key, but I suppose I wasn’t very clear on that. Every time Apollo has had a procedure (except for the initial MRI) he has developed a fever and his airway gets very, very irritated. In April after his bronchoscopies and CT scan he was having trouble breathing. His body just does not like being messed with. As far as the anxiety, Chuck and I are about the most laid back people on earth. He was simply terrified after the heart surgery. We went from having a child who we could put in his crib at night with no complaints (though he didn’t sleep well) to a child who would cry and become hysterical just at the sight of pajamas or his siblings getting ready for bed. It was so extreme the doctors prescribed anti-anxiety medication for him. We were told it happens sometimes with children after a general anesthetic. And yes, I’ve never once been to Children’s and not been thankful that his problems aren’t worse than they are. He is so well off compared to so many other children.

      • bakersdozenandapolloxiv

        Kate, I just popped over to your Caring Bridge site and wanted to say my thoughts and prayers are with you. I have said on this blog before that Apollo has fundamentally changed who I am as a person. Twice I have feared that he would literally die in my arms….in those moments I was given a glimpse of something I hope I never have to experience. And watching Apollo in uncontrollable pain after his heart surgery nearly did me in. Sometimes I feel like I can only take so much. Apollo is healthier than he’s ever been and believe me, I don’t take one second of that for granted. I just wanted you to know you son’s story touched me.

    • bakersdozenandapolloxiv

      Robyn- funny that you mention this. It’s something I’ve been keeping my eye on since our last visit to the cardiologist. For a while I thought he’d be left handed (like Tucker- our only southpaw), but he tends to switch between the two. Even in these photos, you see he goes from left to right. Our cardiologist asked about it, concerned of course, about the blood going to his left arm. It makes me wonder if he isn’t naturally left-handed, but sometimes uses his right hand if his left arm is bothering him. It is so frustrating because he is too young to articulate about things like this. I KNOW by two my other kids were already using their dominate side.

  2. Jessica

    I’m glad he can get rid of the tube! I completely understand your concern about being put under. My daughter had several procedures that required anesthesia and she came out with issues as well. It’s very hard on a body, surgery or otherwise. Hoping this one breaks from tradition and doesn’t cause issues with his temp and airway. I wish they could just grow and install a new one for him 🙁 Hopefully one day we’ll get there with the technology.

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