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One Month Post Double Aortic Arch Repair

This was sweet Apollo, four weeks ago.

So how are things, one month post-surgery?

*sigh*

Physically, Apollo’s wound has healed well. We can now lift him under the arms again. Surgery is a memory…a 2 3/4 inch scar on Apollo’s back will always remind us of his journey. His journey that we are still clearly in the middle of.

His breathing is still as bad as ever (patience, I know).

He has had one major choking incident and a handful of smaller ones. Much, much better than before.

His anxiety around bedtime has lessened…but he often isn’t falling asleep until 10 o’clock…which means I have no Apollo-free time (hence the lack of blogging). He has to be rocked to sleep at night and at naptimes. Prior to surgery we could simply put him in his crib at 8 o’clock with the other kids. He was up numerous times in the night, but at least I could count on some down time every evening.

We have tried: Valarian, melatonin, Bach’s Rescue Remedy, essential oils and a couple of other “calming” remedies. We’ve seen our family doctor, our naturopath and a sleep specialist. He has been taking anti-anxiety medicine for three nights now…it seems to help him wake up screaming less…but certainly isn’t helping him fall asleep.

He is taking an antihistamine to increase appetite. Eating and getting him to eat is still a struggle. That means, my oral-aversion one year old is taking medicine SIX times a day. Six times a day I force medicine in his mouth (reflux meds 2x, antihistimine 2x, melatonin and anti-anxiety)…I feel like it’s counter-productive most days 🙁

Remember my post about Licensed characters? Well, prior to surgery I borrowed some DVD’s from a friend, assuming they would come in handy the first days post-surgery. Among them was Winnie the Pooh. The first week or so when we were supposed to keep Apollo from running around too much, we let him watch it. Every day. Sometimes more than once. Well, now he is positively obsessed with Pooh and all the other characters. He will pretend to be Piglet and point to me and say Christopher Robin. There is one point in the movie where Pooh is hallucinating about honey and there is a song with the words, “honey, honey” over and over. Apollo will come up to me and say, “Nurse, honey, honey?” It’s hilarious (exept the whole my one year old watching a move sixteen zillion times). He also likes to yell, “Anybody up here?” and various other lines from the movie. Someone please tell me it’s normal for him to be quoting movie lines…

Apollo has also, interestingly, become obsessed with what he calls space-a-rockets. Too cute!

Two weeks post-surgery we began taking him out for the first time since fall…and he promptly got a cold. So he’s back in isolation.

He is as active as ever, though I can’t tell you how sad it makes me to here him completely out of breath as he plays. While his heart is considered “fixed” it is quite clear his medical issues are not.

23 Comments

  1. Julie Brown

    Just wanted to give you encouragement on the anti-anxiety medication. Whether it is prescription medication or over the counter, it can take a few weeks to kick in. I know it is a hard decision to give your child medications. I am a registered nurse and I still was hesitant when my then 7 year old son had such separation anxiety that he refused to go to school. (The trigger was that his older brother moved to the middle school, leaving him alone at the elementary school.) We went to therapy as a family which was a life saver, and he was able to go back to school and other activities through his own hard work. But I did eventually place him on an anti-depressant as I couldn’t stand to see him continue to suffer panic attacks nearly every day. It took a full four weeks for the medication to kick in and when it did it was like a light switch was turned on. His anxiety lessened immediately, he was happier and more even tempered. I gave him almost a year of being on the medication, to boost his self confidence and then we took him off. Now when his anxiety resurfaces occasionally he is able to handle it wonderfully. He was also much easier to parent on the medication! Just an even tempered boy with no highs or lows. My husband and I laughed about keeping him on it for our sanity!
    I am so glad that Apollo is doing better, and will keep praying for the respiratory and sleep issues to resolve also. – Julie

    • Kimberly

      This is so true! I had bad anxiety as a child and was finally put on anti-anxiety meds. At first they seemed to make little difference, then one day I woke up feeling better than I had in ages. I wasn’t on the meds forever, either. So hopefully Apollo will have similar success.

    • Julie Brown

      I am glad it was encouraging. That was what I wanted. Kimberly’s reply also illustrates what I was also trying to say. If you are using a medication, stick with it for a month. They really do take that long to kick in. It is worse to start, stop and restart medications. If you don’t see any change within 4-8 weeks, I would try something else. Because if it is going to work, it will seem like magic. After it worked for my son, I berated myself for not using them sooner, but it was such a hard decision initially. Reading Kimberly’s post also reminded me that for the first four weeks I had to remind my son to take his pill. After it kicked in, and he felt better than he ever had, I never had to remind him again!

  2. Maddi

    As for Winnie the Pooh, nothing wrong with him being “obsessed”. Children learn through repetition, when I babysit my cousins that are 3,5,and 6 we will watch a movie they like(currently it is Tangled) and they will say every single line in unison with each other along with the movie. It drives me nuts if I want to watch it but if I go about my normal chores while they watch it I don’t mind as much. It’s kind of cute in my opinion. I think kids need some amount of TV or Movies because the repetition is really important for their little brains. “obsession” with pooh isn’t necessarily a bad thing, at least Pooh is a good example. But if you want to cut him off then he will forget in a couple months.

  3. norma

    If he is still needing some down time like watching tv maybe google search leapfrog letter factory and they have others like numbers ect my four year old loves them and you wont feel so bad when he singing a says “a” and so on bc hes learning. Still send prayers to the family, Norma.

    • bakersdozenandapolloxiv

      Norma, thanks! We have those actually and he likes them but not as much as Pooh.

  4. Robyn

    Our now 5 year old didn’t watch any TV till he was 3 or so… and instead of being obsessed with movies, he’s obsessed with a couple of songs (if you can believe it, “The Wreck of the Old ’97”, as sung by Johnny Cash, and “Wabash Cannonball”, as sung by Pete Seeger. Yes, he’s a little quirky). And I bet at least a few of them had one or two books that you read out loud no fewer than 2164563923 times that they knew forwards and backwards.

    I think there’s just a developmental age where they get obsessed with *something*. Some kids more so than others. TV and movies are more pernicious, it seems to me, because they grab their attention more. But if it wasn’t that, I bet it would be something else.

    • bakersdozenandapolloxiv

      He ate good yesterday and is eating today…The anti-anxiety meds have cut down on the screaming and talking in his sleep, but still does it somewhat and is a very restless sleeper. Last night, however, he slept from 9-2!!! And then slept very well once he was in our bed…so very different than his normal sleep pattern. So today, I feel hopeful…BTW, I wrote today’s blog post last night after he was in bed, which is why that little bit of info wasn’t included in the post 🙂

  5. Jessica

    Well, if my kids are any indication, repeating lines is normal. My kids can repeat lines of movies or shows they’ve only seen once.. sometimes a commercial is enough. It can be very frustrating. My 5 year old currently loves The Adventures of Tintin, though calls him Tim-tim.. He and his stuffed dog “snowy” go on tons of adventures 🙂 He even gets his 15 month old brother to be his friend Captain. So I hope it’s normal, otherwise all 4 of my kids are weirdo’s 🙂

    Glad he slept last night. Hopefully all baby steps to the end goal.

    • bakersdozenandapolloxiv

      Jessica- thanks for assuring me he is normal. I guess I’ll just enjoy his cute “Anybody up here?”

  6. Elizabeth

    Thanks for the update. Man, I wish there was a way to give you a break! I pray Apollo makes improvements and becomes especially more comfortable with bedtime.

  7. Smoochagator

    Space-a-rockets! So adorable! I am glad that Apollo is active and healing well on some fronts, and I continue to pray for complete healing, especially that his airway will open up.

  8. Erin

    Have you read the Winnie the Pooh books with your kids. They are family favourites of ours from when I was a child. I’m not a huge fan of Disney Pooh – love the classics. You can also get them on audiobook which is fabulous. I have a son who was completely obsessed with Toy Story for a few years. My other son sat through it many many times, but not so obsessed. Now they are both moving onto Star Wars. I think the Toy Story child is becoming the more obsessed of the two – I think it’s a personality thing at the end of the day.

  9. Peg Harpham

    I have been following your blog for a while now. I live outside of Fairbanks….not sure how I found you but I have really enjoyed your blog. I was reading tonight about the anti-anxiety meds. I have PTSD and know about anxiety. For a while I was taking an anti-anxiety med at bedtime and that seemed to be enough. Sometimes I needed a PRN through the day. Then the nightmares came back and I saw the doctor yesterday. He said the medicine I was taking is really only good for about 6 hours tops and that is why I am awake without fail in the middle of the night and can’t fall asleep. And I have awful nightmares. So now I have started a new regimen of anti-anxiety 4 times a day (lower doses) and another med about dinner time which helps to control the nightmares. Don’t know if that helps but thought I’d throw it out there.

  10. BreAnna

    I love reading your blog, but I don’t think I have ever posted before. I just wanted you to know that I pray for Apollo every day. God only puts people through what they can handle. Since your family has been through so much, He must have something very special in store for you!

  11. Ellen Nuechterlein

    Glad Apollo is making some positive progress – those little steps are all important! Continuing to keep you all in my prayers. Re: the Winnin-the-Pooh – I echo what others are saying. With some kids, that’s just who they are. I always said that Matt (now 23 and married!) sang before he talked. Any and every song he heard he sang – especially Raffi songs! The as he got older, it was dialogue from movies or TV shows. By college it was the entire schtick from Monty Python and the Holy Grail re: coconuts being carried by swallows:
    Q: Are you suggesting coconuts migrate?
    A : Not at all. They could be carried.
    Q: What? A swallow carrying a coconut?
    A: It could grip it by the husk! . . . etc.

    *Sigh* – makes me wish is wasn’t living across a Great Lake!!!

    All this is to say you will definitely remember Apollo’s sweet little voice reciting from Pooh when he is grown and gone. <3

  12. Jo

    Here are 2 formulas that maybe your naturalist could talk to you about:

    catnip
    valerian
    oatstraw- this is an anti-anxiety

    valerian
    passion flower
    catnip-this is to help with sleep. The passion flower is key here for falling asleep.

    I take both of these, I am also on a pharmaceutical anti-anxiety. When my husband is in town I can get away with just herbs, the reason I otherwise take something else is because I can stay asleep longer. This is essential when I have anxiety attacks during the night and he is gone. If he is home, I dont even fully wake from anxiety before he is already comforting (in his sleep-he has been doing this for 12 yrs). I dont have them all the time, but often enough esp when alone that it isnt worth risking a 2 a.m. wakeup so I do take the meds from the doctor. So while I think these herbs are great, I still dont know that they would be enough.

    Has the doctor tried just plain OTC motion sickness meds? Dramamine-comes in an equate brand-was given to my 2.5 yr old for severe anxiety during his dad’s first deployment. He took 1/4 of a pill 2-4x daily ordered by a doctor working with his psychologist. It has the same sedative that benadryl has.

    Still praying for you all, hope you get some sleep.

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