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Recovering from Heart Surgery {At Home}

Things are going fairly well here. I don’t have any new photos (no time) but I thought I’d pop in here and try to answer some questions and update all of you. Next I’ll answer the questions that have come up in the comments. Be sure and check them if you asked a question there.

The positives: 

* Pain seems completely under control. Apollo is just taking Tylenol now. He only took it once yesterday, though I wish I would have forced some on him before bed because he was very restless.

* Apollo is no longer thrashing around in his sleep and hyperextending his neck. This is HUGE! It gives me hope for some future sleep for both of us. He breathing also seems calm and regular when he sleeps.

* Apollo has only choked on food twice since surgery. This is another huge answer to prayer. Prior to surgery he was choking at every meal. You probably remember me mentioning when he choked back in December and we had to call 911…

* My in-laws are here and are helping me get things back in order around here. Thank you Jean and Sandy!

The negatives:

* Apollo has so much anxiety now. It’s almost like having a different child. He has had to be rocked to sleep at nap time since his MRI in January…now he has to be held the entire time. Yesterday was the first time I was able to put him down during a nap. Bedtime is a nightmare. He starts getting upset as soon as he sees the other kids getting on jammies, brushing their teeth, etc. He is not fighting sleep, per se, but is scared of bedtime. He will not settle down or go to sleep until both Chuck and I are in bed  with him.

* Apollo has been getting very out of breath when playing or crying. I’d say that part is as bad as it’s ever been. A few times he’s gotten so out of breath he’s breathing in with a little “gasp” at the beginning of each breath. He has had several nights of retracting when we go to bed. The nurse from the hospital said it may be that it is painful to take a deep breath, so he’s gasping to compensate.  I know it is too soon for the stridor to be gone, but I wish he weren’t still getting so out of breath. He goes to see our family doctor tomorrow for a post-hospital follow-up.

* Apollo is now refusing to take any medicine….not good when he’s in pain and takes reflux meds twice a day. He is obviously reacting to the trauma…I’m wondering of they have “toddler therapy” for kids like him…

* Apollo still has very little interest in food. He ate so well that first meal at the hospital (he must have been starving) but has not been eating much at home. For instance, today he’s eaten half a rice cake with peanut butter…

The interesting:

* Apollo’s voice is different…more high pitched. I am  guess that we are hearing his “real” voice for the first time. We know he has damage to his voice box from the reflux and his body has formed nodules on them. I think the difference we are hearing now is because it is no longer being compressed.

The future:

* Apollo has three follow-up visits in Seattle on March 20. He sees the pulmonologist, the cardiologist and a dietician. I am very interested to hear what the pulmonologist thinks of his airway now…if he things the obstruction is gone or there is less narrowing in his airway.

* I don’t think there will be much in the way of the cardiologist in years to come. I believe they consider his heart repaired now. It is fully functional (thank God). I think he will probably have annual visits, but I don’t anticipate more than that.

* I do think a pulmonologist will be a part of his life for many years to come…or at least until his airway is declared “normal”…which it may never be.

26 Comments

  1. karen

    so glad to have the updates and understanding of how to pray. lifting you to the Lord in prayer. so thankful your in laws are there to help

  2. Julia

    Hi Renee, so happy to hear the surgery went well and Apollo is recovering! I had a thought about his trauma, my son had surgery at two days old. Obviously he was still pretty much a “stranger” to me then so I could not say whether his behavious changed or he whether he behaved differently. But he was very restless, crying a lot, wanting to be held all the time – he practically lived in a sling for several months. A friend then told me about craniosacral therapy so I took him to see a therapist and I think it did him a world of good, it helped him to release so much tension. At one session I was holding him as the therapist worked with him and he was actually shaking. Maybe something worth looking into.

    Julia

  3. kris

    I would bet there is therapy out there for this type of stuff. Anxiety, the eating issues. I know there is eating therapy. Definitely talk to all the doctors about this. Maybe your homeopathic doctor (I cant’ remember what you have called her but I know I remember you talking about someone)?

  4. Angie

    I had surgery as a young child and I remember being afraid to go to sleep after that. For him, he “went to sleep” one time and woke up in the worst pain of his life. There is a huge sleep association here. This will get better! He is so young and is already building new sleep associations. For now I would throw him Bach’s Rescue Remedy, melatonin, loads of warm milk 🙂 and bring him back to the family bed or sleep with a sibling, if possible. You are super-parents and probably already doing all of that and more. Hang in there and we will keep you all in our prayers!

    • Sally

      Thank you for your perspective! I commented below that my non-verbal son had post-hospital distress, it’s nice to know what may have been going through his head. Though I’m sorry you have experienced it too.

  5. liz

    I am thankful Apollo is much better. I think you are expecting too much too soon though. Don’t push it. I don’t blame you for wanting him better quick. How can a toddler refuse a medication? It is our job as parents to protect them and if that means doing what is best for them then so be it. You are a great to stand up for your children, continue to do this. I also was curious if you worry about doing a blog about your children and your family if you ever think of safety issues of that. I know that is kind of off the wall qeustion/statement but I had thought about it for our family and decided against it because I was afraid some weirdo might read it and stalk my kids or something. Blogs make our family vulnerable and puts them at risk. We do live in a scary society, sadly.

    • bakersdozenandapolloxiv

      Liz, he refuses to take it without being pinned down. Of course we make him take it 🙂 I just don’t want to force anything that isn’t neccessary. And when it comes to the reflux meds, it’s fairly easy to spit out those three million little balls! We have thought long and hard about the saftely issues with blogging, and I really don’t worry about it. I have yet to hear of a case of someone being stalked and injured by a crazy blog reader. I am well aware it “could” happen, but so could a lot of other things.

      • Liz

        Just Wondering, why do you blog? Glad you do but is it in hopes of “being” discovered? Or famous, or a reality show? I like your blog so don’t take that wrong. Just seems like the kids would need more of your time.

        • bakersdozenandapolloxiv

          I started the blog in 2006 as a way to keep out of state family up to date on our Liberian adoption. Then I started posting pics of the kids for out of state family…and jotting down the funny things they said. Then I started just writing about daily stuff, for myself. I periodically get it published in book form through Blurb.com as a kind of “family yearbook”. Slowly more and more people found it and started asking about our large family and homeschooling and I found it a great way to answer those questions. It was a slow process. I added a “search” button on my Typepad blog at the suggestion of a real life friend who was looking for a recipe I had posted. That let to the company, Lijit, offering to put ads on my site which brings in a bit of extra money. Not much (believe me) but it goes into a Paypal account and I usually spend it buying the little “extras” for my kids…We are not looking for publicity…we have been contacted by a lot of different people (including Oprah’s producer). I don’t see my blogging “going anywhere” it is just a place to record my life and let others get a peek if they want. Most of my blogging takes place while my kids are in bed. Recently it’s been happening while Apollo naps (hence the later “publish” times) and the others are doing school.

  6. Nicole

    I have been reading your blog for a few years now and I don’t really comment much but I just wanted to let you know how glad I am that Apollo is doing better and that the surgery went well. When he gets older he probably won’t even remember it, so I think it’s good that it got taken care of now.

  7. Samantha

    So glad to know he’s doing well. We’ve been praying for him.

    After my daughter had surgery we saw essentially a few months of emotional regression in her. Surgery puts people in very odd physical positions, and chiropractic may help loosen things up and perhaps some of the physical anxiety that remains in his body. Chiropractic helped her immensely.

    And there is definitely “play therapy” for a child his age and I’d imagine either your family doctor or the people at Seattle Children’s could recommend someone local. The counselor at Mordecai’s school is also likely to know of a play therapist since it is often a tool used in teaching children with Autism (which I know some of his classmates have).

    It sounds as if Apollo has a strong bond with Enoch. Is there anyway he could be a part of Apollo’s bedtime routine? I’m wondering if a sibling might be helpful because he (Enoch) was not at the hospital and is therefore part of a past of “happy” sleep.

    • bakersdozenandapolloxiv

      Samantha, interesting you mention Enoch as part of his routine. Apollo shares a room with Enoch, Tucker and Hezekiah. For months Enoch has put him bed and they do roll call (just for fun), but Apollo is hysterical at bedtime and won’t go anywhere near the room. I’ve laid down in there with him, we’ve tried having Enoch sit/lay with him…

      • Samantha

        How very sad :(. For Enoch too, I imagine. He sounds like a caring and compassionate older brother. How are your other children dealing with Apollo’s surgery and return home?

        Praying that bedtime gets easier (for everyone).

        • bakersdozenandapolloxiv

          Everyone is doing well except for Tucker. He is now very worried/scared when I leave…he will cry and want me to pray with him. It breaks my heart.

  8. rebecca m

    I’m so thankful that you are home and that your little guy can continue to recover amidst all those who love him there. The kids and I have been praying and my daughter(6 years) in particular keeps asking to see if there are any new pictures of Apollo on the computer. I’m going to ask my sister what she would recommend for a type of therapy for Apollo, post-surgery. She is a child therapist in the Seattle area but she might have some ideas that you can do at home.
    p.s. My youngest two have some tough respiratory colds right now and last night I ended up holding my 10 month old in bed, in the dark as he thrashed around trying to breathe. I could only think of you and Apollo, Renee- for all the nights you have done the same thing.

  9. sunny

    Hi, Anxiety post surgery is not at all unusual (although not something commonly talked about) even in adults. My dad had a terrible time with this after surgery and no one knew what was wrong. Some people think its a reaction to the anesthetic, others think its PTSD. Certainly its truamatic to be in that kind of pain, so no wonder he is anxious. Take care.

  10. Sally

    Sorry he’s refusing medicine – it’s no easy task to get medicine in a resistant toddler!

    Last year my son, who has been hospitalised plenty of times with other issues, got pneumonia really badly and was in hospital for five days with it. He always had someone with him, the same a every other time he’s been to hospital, but this time he had major sleep anxiety issues once we were back home. He was nearly 8yo but non-verbal, so it was really hard to know what to do for him. We did a lot of holding, rocking, singing, praying, reciting scripture (I run out of things to say talking with no interaction, so I used the time to review the memory work I was doing – the sound still soothed him), ANYthing we could think of!

    After a few months we felt it wasn’t whatever had initially bothered him, but just associating bedtime with being sad. By that point he was back in his own bed, and do you know what eventually broke that connection? Leaving his door open a crack. Lol. Funny how something unsolveable, changed over time to something that was the most common fix for sleeping issues ever.

    Anyway, that to say – been there, it’s rough.

  11. Jenny

    After my mom had open heart surgery, she had nightmares. They went away, though. Also, my friend’s little girl had heart surgery and didn’t sleep well or want to sleep alone either. I don’t think it was very long before she was back to normal. I hope it’s the same for your little guy.

  12. Renee

    I work with kids who have a variety of illnesses, and who have gone through surgery, radiation therapy, etc. With little ones, sleep issues are VERY common–the last time he fell asleep was very painful, and he’s too young to easily tell the difference between falling asleep with anesthesia and falling asleep at home. I’d just provide him with new, happy routines so that he can see/trust the difference–falling asleep with you, rocking, having Enoch read him a story, preparing him by talking about what’s going to happen in the nighttime and when he wakes up (which was, after all, the truly scary part). While his breathing is an issue, coaching little kids on deep breathing can also be helpful–either by simply blowing bubbles or by pretending to blow up a balloon in his tummy (in through the nose and out through the mouth).

    I know you’re worried about your little one, but I wouldn’t be overly concerned or pursue a therapist yet–he’s working through a scary experience in his own, very age-appropriate way and should be back to himself soon. You’re certainly in my thoughts!

    • bakersdozenandapolloxiv

      Lisanne, thank you so much for this resource. Apollo is not just recovering from the most recent surgery, but he had a bronchoscopy and adenoidectomy in December, choked so badly he had to be trasported by ambulance in December, and and MRI done under a general anethsetic in January…plus a myriad of other doctor’s visits, an ECHO, EKG, etc…he is a different boy entirely. It is so sad to watch.

  13. Jo

    I think it will get better, the sleep trauma. It has to be scary to go to sleep and wake up in pain. He already has negative associations with oral-food, medication, and possibly he can remember other things like tubes. I think it will get better, but then he may just learn to deal with it. Most people have something in their mental closet, for some reason I cannot sleep alone with a door shut because I wake disoriented and cannot find the door. I do not know why, no one ever trapped me as a child but that is the logical psychological answer. I am sure it will get easier, so glad many parts are going well. I do hope his breathing gets easier, poor guy he cant quite run and play.

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