Six Weeks Post-Vascular Ring Repair

posted in: Apollo, Special Needs | 29

Life post vascular ring repair

Photo from Instagram. Apollo was trying to hide under the pillows with Enoch’s Kindle.

Yes, it truly has been six weeks since Apollo’s heart was repaired.

Six weeks later and he is still struggling to breathe (we were prepared for this to take time to improve), still struggling to eat and is sleeping worse than ever. He is taking anti-anxiety medicine. We have now quadrupled the original dose. Every time we increase it, he sleeps good for two nights (from 9-4 when he first started, then 9-2 when we increased both times) and by night three he is waking every 1-2 hours again. He is taking so much now, he is tired and groggy most of the morning and wants to nap by 10 am…which means he is ready for a second nap by 3 or 4. And I don’t dare put him down then or he will be up until 10 or 11 at night. I will say, the medicine has cut down on his screaming in the night- a behavior which only appeared post-surgery.

We are giving him an anti-histamine to increase his appetite. Making him hungry, even though he has so much difficulty eating.

Back when we first suspected Apollo had a double aortic arch, it all seemed so straightforward. It’s a rare heart defect, but what we could find to read was very encouraging. The Seattle Children’s Hospital website says this repair is “not a very invasive surgery”. And in the big picture it really isn’t. At that time we were blissfully dreaming a minor surgery and son who was fixed.  Fixed, as in cured. Then on February 7, we learned for the first time that he would never have a normal airway. That’s a hard pill to swallow, my friends.

But at least his eating issue would resolve itself…right? Or not.

{And by the way, while typing this I received a call from Children’s Pulmonary department, and they still haven’t received the report from the feeding evaluation. Are you serious? On one hand, they (feeding evaluation team) freak out and act like he’s going to die if we don’t do something NOW, and yet a week later, they still haven’t faxed the report over?!}

I am in contact with a few mom’s with children who have a double aortic arch…and none of them have feeding issues to the extent that Apollo does. Several have had trouble with choking, but not with gaining weight. I am beginning to suspect that he still has something else going on with his esophogus…either another issue or one caused by the vascular ring. But when I bring it up, I keep getting brushed off because nothing was found in the bronchoscopy. Oh yes, my friends, the doctors actually have the nerve to tell me if it wasn’t found in the bronchoscopy, it’s not there…You know, the bronchoscopy where the double aortic arch was missed entirely? You would think we could all agree that the bronchoscopy was a joke and toss out the findings…right? Apparently not.

And he’s coughing again at night. Coughing which leads to choking which means even if he’s in his own bed I have to stay awake listening to make sure it resolves itself.

And so here we are, six week post-surgery. Still looking for answers.

 

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29 Responses

  1. I can’t believe they’d rely on the results of a bronchoscopy that COMPLETELY MISSED HIS PRIMARY ISSUE. I am so sorry to hear that.

  2. The button works on my blog. Praying for you, Apollo and all the doctors involved.

  3. Wish you could come to Mayo Clinic or another hospital similar (Clevland Clinic comes to mind) with all specialities working together to get everything treated.

    • bakersdozenandapolloxiv

      I wish they would just give him a full work-up here in Seattle. The specialists are a mixed blessing, they know their stuff, but only look at their particular specialty. No one looks at all of him.

  4. Brenda Colvin MD

    I would agree with you that something else is going on with Apollo. A bronchoscopy does not look at the esophagus at all so that should not even be something that could be commented on. Has he had any radiology studies looking at his swallowing? These are pretty hard to do in little ones, but if Apollo will suck on a bottle, you can do it. If he has not had this, he needs one to rule out tracheoesophageal fistula. Google it and see what you think. Keep on advocating for Apollo – he needs it. I hope this helps. Brenda

    • bakersdozenandapolloxiv

      Brenda, thank you so much for your input! He hasn’t had a swallow study, and I honestly don’t think we could get one. He will only drink water and sometimes our fresh vegetable juice…and he is VERY difficult to feed, I don’t think we could mix barium in with food and expect him to sit in one place and eat, even a bite or two 🙁 I am waiting to hear back from the nutritionist in the pulmonary department.

  5. My heart just goes out to you. It is a nearly impossible situation to face all that you are facing with sweet little Apollo, with all of the research you have to do on your own, with all of the advocating you have to do with the doctors, with all of battle you have to wage just to get him to eat and sleep and breathe. You do all of this while caring for your other children and while being sleep deprived. I’m not sure how to help you other than to tell you that it will not always be like this. Apollow WILL GET BETTER. It is a very bitter pill indeed to be told that you child has something that they will never fully recover from. I supposed on some level peace needs to be made with this but I would never close the door on the possibility of this being wrong as well. But what I am here to tell you is that Apollo will get better. You are good parents and you are relentlessly caring for him and exploring all the possibilites until you find the one that puts him fully on the road to recovery. He will get better. Keep that in your hearts and even when you become discouraged don’t worry because I, along with many others, are keeping that in ours. With love and prayers, Angie

  6. Just thought I’d say yep, the button works and it links to Apollo’s Story.

  7. I have no words of comfort, I do not know how this feels. I am so sorry… I can do nothing but continue praying for your family. Sometimes when things are going badly in life, it feels like surely the world is spinning at a different angle or speed and you cant do anything to change it. We have had things in our 12 yrs of marriage and parenting that were difficult, not the same thing as you have, not even related but I have felt helpless. Like I cannot make any difference and I am just standing there with my arms too long, stuck in one spot while the world keeps moving around me despite my inability to change it. That is when I have to just pray and ask God to keep guiding me and showing me how to move forward, because as one human I simply cannot do all that needs to be done.

  8. The button works on my blog.

  9. cecily spencer

    I am so sorry. Maybe you could film him “sleeping” and coughing for the doctors. You could certainly could insist on a repeat brochoscopy. This is why medicine is more art than science but I think doctors like easy answers and get frustrated with parents when they aren’t. Praying for you.

    • bakersdozenandapolloxiv

      Cecily- I took video of him sleeping last night and called the pulmonologist today…hopefully we get some answers.

  10. A lot of things I have heard of are much easier for doctors to understand if there are videos of it happening. Sleeping. Eating. Playing. Etc. Hope you find peace sometime soon!

  11. Have they ever considered a sleep study for Apollo? My daughter had sleep apnea and had surgery in august to remove her tonsils and adenoids. Since then she’s gained 6 lbs and grown three inches. I know lots of things can cause OSA….and her interrupted sleep contributed to her failure to thrive in a big way. Best of luck to you all!

    • bakersdozenandapolloxiv

      K- the sleep specialist ruled out a sleep study because he doesn’t have any signs of apnea and likely wouldn’t sleep hooked up to all the wires anyway. He’s had his adenoids removed (in December) and his tonsils are normal sized.

  12. I remember a few posts back that someone suggested you video the episodes he has. I know it sounds insensitive in a way to do it while your child is suffering but so many haven’t seen what you have. I’d get a camera and keep it on hand at all times. When he is in trouble one can help while someone else is filming.

    • bakersdozenandapolloxiv

      Dani- I’ll be trying to get video next time it happens.

  13. mary-lynn snyder

    Have you guys through all this with Apollo thought about going to a different hospital, possibly another state? I have a friend who has an adoptive child that has esophogus issues (she is from Liberia and I believe ingested Lye). The child has been through numerous surgeries but the doctor/surgeon/team seem to be wonderful. Just a thought.

    • bakersdozenandapolloxiv

      Mary-Lynn, we’ve considered it, but want to be close to the doctors caring for him.

  14. I like the idea of video — not just the choking episodes while eating, but also “typical” Apollo playing, sleeping, running, etc.

    Could you remind me whether he has had upper endoscopy (looking at esophagus, stomach and duodenum with a fiber optic scope) and biopsies?

    Does SCH have a failure to thrive clinic?

    • bakersdozenandapolloxiv

      Robyn, I think I will be doing more videoing. I got a call from the feeding evaluation team today and they are recommending a swallow study. He has had a scope sent down his nose and into his throat but nothing lower than that. It’s like they keep finding problems (reflux, adenoids, DAA) and fixing them but never giving him a thorough work up. I don’t know if they have a failure to thrive clinic…he keeps gaining just enough weight that everyone thinks he is improving.

  15. Another thing you could look up and consider is eosinophilic esophagitis — especially worth thinking about if he has eczema or food allergies. Diagnosed with an upper endoscopy, which is done by a gastroenterologist. Treatable with diet changes and/or a relatively low dose of steroids.

    Swallow study, if he can manage it, would be a good way to rule out mechanical problems with the esophagus (including obstruction).

    Wish I could help more. Your little guy, and the rest of you, are in my prayers.

  16. Renee,
    I fell in love with your family about 2 years ago when you were blogging about each of the children’s births. Wow, I am not a blog reader but I was totally hooked. THEN the huge SHOCK with Apollo’s birth, I just couldn’t believe what I was reading. I even made my husband read it! We started diligently praying for Apollo in early January, and will continue. My heart just grieves thinking of you watching him suffer day by day. I’m sad enough and I don’t even know you!
    I wanted to mention my only idea. Are you sure that the reflux is under control? I have laryngopharyngeal reflux (LPR). And it is debilitating. I’m not talking about heartburn – I don’t have any. But if I am not extremely careful with medications and diet (NO coffee), I start feeling like I can’t breathe and am going to choke all day long. I have to concentrate while I am eating to make sure I don’t choke – I even choke on water. Prior to diagnosis, when at it’s worst, I was waking up not breathing at night, and also speaking like a frog was in my throat all the time. Is he on the absolute maximum safe dosage for PPI right now? I definitely think it’s worth a try to get the max dosage for 1-2 months and just SEE if anything improves. I remember he did have slight improvement when you introduced the second pill. Just an idea. God bless you guys. We will keep praying.

    • bakersdozenandapolloxiv

      Shannon, thank you for your kind words and for your input…the pulmonologist doubled his reflux medicine in February, and that is what finally stopped his crying at every meal. I do know that his esophagus has shown significant improvement in the last year as far as inflammation and irritation…I have no idea how they check to see if it is under control or not…and our family doctor was shocked by how high his new dose is…he said it was way more that he should need.

      • Possibly “way more” than would be necessary for traditional reflux. LPR is a WHOLE ‘nother ball game. I know with LPR (which is when the acid gets too far up and damages the larynx), PPI’s are not even going to completely solve the problem no matter how high the dose. You should google LPR sometime, and possibly children. I know I once happened upon a message board of parents discussing this about their children. I just think it might be worth really digging into since you DID seem improvement when you upped the dose. That means something. There are just so many similar things I see with myself. Does he get really tired when he’s eating? I have struggled with that also. And I know chronic coughing is another LPR symptom. And I have also had difficulty breathing with physical activity. (at it’s worst, just walking up the stairs I couldn’t catch my breath) Maybe you could get a second opinion from a different Ear Nose and Throat doctor (try to get a good recommendation, which I know is hard, I don’t have a great ENT myself!) Another thing he can do is take a zantac 30 minutes before bed (I know he’s already on so much medication. sigh.) But you CAN take a PPI and H2 blocker simultaneously, although spaced apart dosing.

  17. I am sure you know about it, but I was reading a blog the other day about a mum who couldn’t get her preemie to eat and she talked about some high caloric thingumy to add to food. Sorry not to be more specific. Her blog is here:
    http://www.lifewithelizagrace.com/2007_09_01_archive.html
    I was reading from the beginning but her bub wouldn’t eat anything but yoghurt and even then not much. Went on for several years. Just thought I’d mention it in case you hadn’t heard of it.

    • bakersdozenandapolloxiv

      Lou- we have tried to supplement with high-calorie formula. The problem is getting him to eat it 🙁

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