You are now entering a parallel universe…

Everything looks the same, everyone looks the same, the dog is still cute but annoying, AND YET…

Everything is different. No super loud suction pump going off all the time. No super loud air compressor. No need to keep Ike's clothes and towels and blankets all downstairs. No need for Ike to sleep downstairs anymore. No HMEs, no saline bullets. No nebs. Only reflux meds.

Suddenly, there are three kids laughing all the time. Who knew that every time Ike was smiling, he was also laughing? I could have guessed, but never knew until now.

Yesterday, the whole family – all together, with no nurse! – went to Ikea. We bought Ike his own bed (to go in the master bedroom because we've suddenly realized we're a room short, and also because I can't let him out of my sight yet. I've still been attaching the pulse ox to his toe at night, to monitor his oxygen levels, but he hasn't dropped under 99 since he was released from the hospital, so I should probably put it away.)

Our big treat this morning is that Ike-a-saurus is walking again. He's pretty wobbly, but as I write this, he's standing on the kids little trampoline in the playroom, laughing like a mad man while the wee-er one hits him with balloons.

The wee one and the wee-er one aren't sure what to make of all this. When we got home the wee one cried. He said it was all overwhelming and he didn't know what to think or feel. He said he was scared and didn't want everything to change. But then we talked about all the things that would be changing (specifically, a time in the future when Ike and the wee one may share a room – and a bunk bed) and he started to feel better. I think the kids were surprised by the scars on Ike's neck and chest – and they were scared by them. I didn't do a good job of preparing them for that, I honestly just didn't even think it would be a big deal. That was dumb of me. The wee one was really freaked out. He actually was nauseated for a few minutes.

Now, though, they seem OK. Obviously, it will take us all a while to process everything, and we still have challenges to come. We will have to take Ike back to Dr. Fancy Pants in a month, and then three months after that, and then six months after that, and so on. We are under instruction to have Ike airlifted to Cincy if something goes awry. His airway will always be smaller than typical, and contact sports are probably a no go. There's a high likelihood he will need oxygen support when he's sick, because of some scarring in his lungs (attributable to the illnesses he had while trached, and to being a preemie). We will still have to be extremely vigilant about germs, especially during RSV and flu season. Things can still get perilous pretty fast, but I can't be thinking about that all the time. I can't dwell on it. We have to celebrate being trach-free, and enjoy every day.

So many little things are new again – hearing Ike laugh (we'd only heard him laugh once, in his sleep, before he was trached), being able to give him a bath in lots of water, buying a sand table, planning vacations where we don't have to contact medical supply companies, turning all the lights off downstairs at night because no one has to be down there, scheduling doctor appointments whenever we like because we don't have to worry about our nursing schedule, swimming, etc.

It's our house and our life, but it's so much different now.

Sleepyike

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24 thoughts on “You are now entering a parallel universe…

  1. I am so happy for the entire Roy family! This has been such a long road and I hope you can enjoy just being back to “normal”.
    Becky

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  2. I am so moved by this, Kari, I may or may not be tearing up a little. I want to come hug you and your whole family. You have such amazing kids, who are so strong of mind and heart. I absolutely cannot wait until the next time they ALL THREE visit during one of our cafe write-a-thons. Congratulations on your alternate universe. How awesome!

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  3. Yay!
    I was wondering if you’d still be using the monitor šŸ™‚ I was telling Randy last night that I’d still want one. Heck, I wanted one on *me* after we got back from the hospital after Aaron was born šŸ˜‰
    Way to go all of you and here’s hoping for super calm sailing from here on out.

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  4. Wow! I was hoping the trip home went well – what a great post.
    I know from my experience with my son that kids bounce back so fast from really traumatic surgeries but it is hard to hear when you are stressing about it and terrified.
    What a great way to start my day and hear that Ike is laughing again. Hope you keep having wonderful normal days and normal things to look forward to – like what kind of Halloween costume is Ike going to wear this year šŸ™‚

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  5. Crying at work. I think there’s rules against, this, but I don’t care! Yay! What happy happy news. I’m so thrilled for you. šŸ™‚

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  6. Absolutely amazing! It sounds like so much has changed so fast. I’m so happy for ikasaurus and the whole family. The thought of hearing him laugh is so poignant and sweet.

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  7. It’s just magical! And that shot of Ike sleeping so peacefully, so happily, so trach-free…it’s just heartwarming.
    You made my Monday!

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  8. I feel as if I’ve watched your family climb the tallest mountain in the world, nails digging in to the armrest of my chair, praying that you make it to the top.
    You got there. Amazing!

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  9. I’m sitting in my kitchen laughing and crying and blowing my nose on paper towels. Congratulations to all of you. Contact sports are overrated anyway.

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  10. Breathing such a huge sigh of relief for little Ike and for your whole family. This post choked me up and i’m just so, so happy for your little man.
    Here’s wishing for many more uneventful days…
    nancy, noah’s mama

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  11. I never managed to comment on this when you posted it, but I wanted to say it brought happy tears to my eyes. I am so glad that things are becoming “normal” (whatever THAT means) for you guys now.

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