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After the Heart Repair

Apollo had his post-surgery follow-up appointment with our family doctor yesterday. The good news is that according to our family doc (who was the first to suggest an “obstruction”as the cause of his noisy breathing) it is gone! He said he can hear more air moving through and no obstruction at all. That was so exciting to hear and I am hoping to hear the same from the pulmonologist next week.

The bad news would be Apollo is now incredibly insecure and panicky at bed time. Words like “brush your teeth” and “jammies” are trigger words for him. He runs around. He asks to nurse. To watch a movie. To read a book. To go outside. He will hide. ANYTHING. He  has been badly traumatized. Keep in mind, he is not just recovering (mentally) from his latest surgery.

In December he had surgery (a bronchoscopy and adenoidectomy) then he choked so badly on a piece of food he had to be transported by ambulance to the hospital. In January, he had a an MRI under a general anesthetic. In February he had an ECHO that terrified him. And of course,  heart surgery and a hospital stay in March. These events have eroded his sense of security. He is scared to nap, scared to sleep. Scared to be alone. I brought it up to our doctor, who suggested these:

Valarian and Bach Kids Rescue Remedy. We bought both on our way home from the doctor’s office. He used them last night before bed and today before nap time. No noticeable difference, but perhaps these take a while and we need to use them a few times before they work. Anyone have any experience with them???

I will be taking Apollo to our naturopathic doctor as soon as I can get him in (she, by the way, suggested he might have a heart issue long before anyone else did). Right now, I feel run ragged by holding him during naps and no down time at night since I have to go to bed with him. It’s not that I can’t just put him in bed at night (or naps) it’s his terror and anxiety that I am concerned about. I also believe she is the best person to help us find a path to health for Apollo. I love our doctor and he’s great when Apollo needs medical care, but the naturopath is the one equipped to help us get Apollo’s body healthy with food and supplements.

On the bright side, he’s choked only twice since surgery and is able to breathe better at night! So very happy to see some progress.

{Update: I started this post yesterday, but didn’t finish it. Last night I gave him both herbal supplements before bed. Apollo fell asleep in my arms while we were watching a movie. At  8:45 I was able to put him in his own bed where he slept until 11:30. He spent the rest of the night in bed with us. I am so excited. I think two things helped: the supplements AND he fell asleep without seeing anyone get ready for bed, so there was no “trigger” last night.}

 

24 Comments

  1. Kristen

    I’m so glad the herbs worked! Bach is great for kids… valerian tends to either go strongly one way or the other (makes them sleepy or hyper). The other thing my traumatized kids have been helped by is a bit of lavender essential oil on their pillow. For a little one, it could maybe be on a bit of cloth or a blanket that’s near him when he sleeps. With older kids, I attach the ritual of getting to choose where the lavender goes on their pillow as part of our calming bed routine.

    Holding you and Apollo up and hoping that sleep, breathing, eating, and peace continue to improve and increase.

  2. Katie

    I don’t know about the Bach for kids but valarian has helped alot at my house on sleeples nights. Another thing that helps is chamomile tea with catnip. Yes, I know it sound odd, but catnip has a calming effect on people. The lavender is also a wonderful idea. We’ll keep praying for Apollo and your family. God bless you.

  3. sandra

    Rene I have used Bach for many years on lots of things,also I use a lavender aromatherapy spray on my pillow at night,it works for me..Thank you for keeping everyone informed,he will continue to improve..

  4. Vivian

    we have to give praise for every bit of change you tell us about him. i have an 11 year old grandson who had to have brain surgery at the age of 5. he did great, then several months later…the fear set in. he is 11 now and still struggles with it. I just pray your little guy will recover quickly and God will give him peace.
    We praise God in the good and bad times, ’cause He is always with us.
    thank you for keeping us updated.

  5. Jo

    I have experience with these, I used the bachs when my son had a mental breakdown during Daddy’s first deployment, they did help. What helped more was this-valerian 1 part, passion flower 1 part and catnip 2 parts. You can get those other 2 at the same herbal store that you go that one from. It may do enough on its own, but catnip is the best for anxiety. I use catnip, valerian and oatstraw for this. This is effective for any anxiety, I have given it to a number of women and children who are debilitated by anxiety. It works immediately. The valerian helps sleep, but the catnip and oat makes the mental and physical anxiety absolutely disappear.

  6. Angie

    I’m a big believer in Bach’s. We’ve also had great experiences with melatonin for sleep issues although I’m not sure if that would be appropriate for him. Glad you’re going to your naturopath. Poor boy. His anxiety is understandable. Those wounds are real too but they will also heal. They will. You are wonderful parents.

  7. Jo

    I know… I just commented. This is just an area of interest for me, you could possibly do some play therapy with him. You could have him put some babies of his own to nap, making sure he knows it isnt his nap time. It may give you a good idea of what he thinks will happen, I mean I know you already know what he fears, what he thinks will happen but you might be able to show him through his babies that it is all over with. You could work with his babies (dolls or stuffed babies) to show him that they will just sleep and wake up at home like normal babies. Poor guy… I am so sorry for him and glad you are seeking some natural remedies, I think they will help him very quickly.

  8. KAYK

    I’ve used the Bach Remedy products for my 5 children. I get the remedy in a spray form (like breath spray) and they get a little spritz of that after a fall or some other reason for panic/scared/hurt etc…. It seems to work real well for them.

    I’ve used Valerian as well, not as much but I’ve used it just fine. The other that I’d recommend would be Chammomilla by Hylands. It’s a homeopathic remedy that is also a calm/relaxing herb.

    Also, Lavender essential oil on a special blanket or stuffed doll would be helpful too.

    Night terrors/anxiety are no fun. I completely understand about the ‘triggers’ and it sounds like you’ve got the best method of avoiding them by distracting when it comes to ‘bed time’.

    Of course Nursing is the best miracle medicine for your little angel.
    But you already know that 🙂

  9. Sally

    Wishing Apollo well! You asked if anyone had used the supplements. I’ve used valerian for sleep (along with Rose Hips and Melatonin) and I’ve used Rescue Remedy on my cats. I do animal rescue and when cats are stressed, the rescue remedy seems to chill them out a little bit. You can either add it to cats water or you can rub it in their ears where there is no fur and it will absorb through their skin. Not sure how it’s used /method of administration for children but hopefully it will help!

  10. Dawn

    My son has had many hospital stays and heart/pacemaker surgeries over the years (starting at age 6 months). Was Apollo on a heart and lung machine? It tends to disrupt sleep for a few months and make children more fearful. I found that infant massage and the bach rescue helped tons. We also used Lavendar baths and soothing music. So happy to hear of the improvements.
    Blessings,
    Dawn

  11. Lindaupnorth

    As a mom of a traumatized kiddo (brain surgery at 13 mo’s after a ton of other dr visits and since then even more than a ton) I just want to say that the trauma will wear off. With the love and closeness you all have, it will happen. Just love him through it 🙂 As opposed to adopted kids where you have to admit that love won’t fix it, this is different. Love will probably fix this 🙂 He will learn to be secure again cuz you are going to be there to help him through as you have been since he was born! God’s peace to you all, and PRAISE THE LORD for his care for Apollo and for you all!

    • bakersdozenandapolloxiv

      Linda, I am 100% sure he will be fine in the long-run…I’m just not sure I’m going to survive the lack of sleep until then…

  12. avital

    Will he sleep in a carrier on your back or front? If he is too big for comfort in an Ergo, may I recommend a toddler carrier? http://babiesbeyondborders.com/ The Mei Favourite Toddler carrier is very similar to an ergo, except the waistband is wider, making it actually distribute weight to your hips much better, and the shoulder straps are really wide, making them much more comfortable when carrying an older and bigger baby/child. The carrier itself is also longer in the body, better suited for a toddler. You can get “seconds” for $45, they are structurally sound, just have a snag in the fabric or something cosmetic like that.

    My experience with Bach flower remedies is that Rescue Remedy is too generic and a combination of remedies more specific to the individuals needs, prescribed by someone who knowledgeable about Bach remedies works much better. I have not found that Rescue Remedy worked for me and my anxiety issues, but it has worked for my kids.

    I see several other people have already recommended lavender oil, which I would also suggest, and I would suggest pairing it with roman chamomile. My oldest who is four was experiencing a great deal of anxiety when his dad was leaving for work every morning, and I made him an aromatherapy necklace – two pieces of felted wool sweater cut into heart shapes and sewn together and stuffed a bit with more bits of wool and dropped several drops of lavender and roman chamomile inside before sewing it up. His dad puts it around his neck each morning and it has really helped him. I also use several drops of lavender and roman chamomile in a small misting bottle of water and spay it on my children’s pillows before bedtime and they like it when I spay it above their heads and they do some deep breaths.

    I’m sure you’re already doing lots of praying, but is Apollo able to understand and pray with you about his fears?

    I’ve done fair bit of study with Dr. Gordon Neufled’s materials on attachment and child development, and I’d say that Apollo’s expression of anxiety is a good thing – he feels safe to express his fears in the ways that he knows how. That’s a sign of secure attachment, and doing what you are doing, the things that make him feel safe- holding him, going to bed with him, are the right things to do, and as the days go on and he begins to feel stronger, you will find ways to bridge those fears of separation more easily.

    We’re praying for you, and for Apollo that he would heal quickly, physically and mentally and that you would have the wisdom and discernment to find the paths to ease the fears and quell the terrors that Apollo is experiencing. Our bodies heal so much faster than our hearts, may you have strength and peace in the days a head as you help Apollo heal.

    • bakersdozenandapolloxiv

      Avital, Apollo has never liked carriers. I suspect either he couldn’t breathe well in them or perhaps they exasperated his reflux…

  13. Victoria

    Just to echo the above comments…so good to hear progress; and see Apollo up and about at play 🙂 one step….two step…..is our motto and relevant to so many situtations – we first heard it from Rich Nathan speaking about the wisdom of Proverbs, and it has been a family saying every since whatever the worry or overload.

    Have a great weekend xx

  14. Kathy

    In addition to the Rescue Remedy, they also make a specific remedy for sleep, called Rescue Sleep. It is almost the same, but it has an additional element specifically for settling down persistent thoughts and fears. It works much better at night for my kids and for me – we didn’t get much relief from the regular Rescue Remedy at night. Each person is different, of course. The store where you got the Remedy should know if they have a Sleep remedy for tiny tots. I could also check our local co-op and see if they have information.

    Also, every time your little guy goes to sleep and wakes up safe in his own home, he will heal a little bit, as his brain will re-form the pathways of trust that have been there since birth, and just got re-routed by this trauma. You will all survive this.

  15. robyn

    Nothing to add, I’m just loving the collected wisdom I read in these posts. This is stuff that didn’t get covered in medical school!

    I really like the idea of his putting babies to bed, and of creating a routine that involves different elements from those he associates with the hospital.

  16. Elizabeth

    Hoping for good sleep for Apollo AND for you!! When you finally start getting a “normal” nights sleep you’ll probably feel like you could conquer the world after living for so long on so little.

  17. Katie

    As a counselor, I would second the “play therapy” idea, either with you or a professional. At least if the terror continues. How much is he talking and able to say? I agree with the idea of playing “nap time” and maybe also “doctor” or “surgery” with him. Let him provide the comfort to the dolls too. I hope some of these remedies work too. Can’t imagine carrying on with everything with no sleep! SO glad and thankful that he is doing so well, terror notwithstanding. Love your blog and admire all you do with/for your kids! (Oh, and as an aspiring photographer, LOVE your pics too!)

  18. Jodee

    I know I’m a few posts behind but wanted to caution you about lavender, My youngest had lots of sleep anxiety as an infant and my dr recommended the “Bedtime Bath” that had recently come out. I tried it and the first night she went to sleep great…only to wake up about an hour later screaming and inconsolable. Took a few times to figure it out but something about the lavender gives her horrible nightmares. She’s 12 now and my sister gave her a lavender scented pillow spray and ;that night she woke up screaming from a horrible nightmare. I know lavender is in a lot of natural remedies but we found it just made things worse for us. I will keep praying for you guys and that you can get some rest!

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