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Finding a new normal

I sometimes wonder if people imagine Isaiah as lying in a bed somewhere, looking very ill.  The truth is, he looks and acts like any healthy 3 year old.  Looking at him, you would never know that there is anything wrong with his health.  That is until you roll up his sleeves and see his arms or take a look at his thighs. The bruises left by his twice daily enoxaparin injections are the only visible signs of his condition.  There are times when I actually forget that Isaiah has any aneurysms, only to be reminded by the alarm going off, indicating that it's time for me to give him one of his many medications.

I think one of the few blessings in all of this is that Isaiah is young enough that he has quickly adapted to this new way of life and will probably not remember what life was like before he had Kawasaki disease.  He knows each morning and each night, that he will receive his shot.  He has even begun to ask if it is the leg or the arm today.  He still comes over dutifully to receive it and only squirms right before it's time to actually penetrate the skin.  He is used to swallowing his pills crushed in juice 4 times a day and now wants to push the plunger on the syringe himself.  He looks forward to his daily dose of chewable Asprin, because I am sure to him it tastes an awful lot like candy.  Isaiah is now a pro at giving blood and consistently surprises the nurses with how still he can be.

Isaiah's "old man" pill organizer and sharps bin filled with used needles.

If anyone needs to work on adjusting to Isaiah's condition, it would be me.  I am still trying to adapt to our new normal.  I am not referring to the injections or the medications.  I was used to all of those within the first couple of weeks.  Instead, I have found that I need to adjust our overall routines, lifestyle and expectations.

I was recently planning a trip for March break and realized with how many new variables I had to take into account.  We decided that we should stay in North America, as we did not want to take Isaiah to the Caribbean, where access to adequate hospital care may be limited.  We ruled out going to the west coast, as the change in time zone would throw Isaiah's injection schedule out of whack.  I am currently planning the best strategy for transporting all of Isaiah's meds.  We want to have it in our carry-on in case our luggage gets lost, but are also considering splitting it up between more than one bag just in case.  I have to make sure we bring extra doses and also find out if our nurse practioner will be able to call in a prescription for us anywhere in North America, if need be.  I also need to order Isaiah a MedicAlert bracelet, so that any emergency medical personnel are aware of all the blood thinners he is currently taking.  Whoa.  I thought travelling with kids was a lot of work before, but now it's even more complex.

We are currently taking a family skating class.  Isaiah received the okay from his medical care team to try out skating as long as he wears a helmet.  Before our first class I thought I would be fine with Isaiah falling.  I figured that he's pretty low to the ground and most importantly he will be wearing a helmet.  However, when we actually got out onto the ice I was much more nervous about him falling down than I thought I would be.  I cringed each time he had a fall or even a near fall.  I reached out to catch him every time, but realized that he would never learn if he didn't fall, so I have since tried not to catch him EVERY time.  I also found myself relaying an abbreviated story of Isaiah's condition to his teacher, even though it really wasn't necessary for her to know.  Maybe I just needed to share it, so that she would understand my anxiety.  It has prompted her to allow him to use a pusher beyond the usual third class.  She told me to tell the other parents it was because Isaiah has "medical issues."  Great.  I did not want him to be treated any differently and now I had just caused that exact thing to happen.

At skating with his beloved pusher.

I recently enrolled Isaiah in school, as he is to start junior kindergarten in the fall.  I filled out the usual paperwork and then came to the last section regarding medical conditions.  It was so disheartening that I had to fill out a whole other form to clarify Isaiah's condition and outline an emergency plan.  I hated having to write the words "risk of cardiac arrest" on his form.  It is moments like this that make our situation so real and so frightening.  You may think that it would feel real to me all of the time, but truth be told, it doesn't.  Even though I am actually living through this nightmare, it is so surreal.  Because Isaiah's aneurysms are not something I can see or touch and he does not complain of pain (thank God) or show any signs of being sick, it is almost like they don't exist.  Maybe that is why I am able to get through each day without worrying about him every second, but it makes those moments of stark reality that much harder to bear.

When I actually count the months, it has only been four months since Isaiah was first diagnosed with Kawasaki disease and only two months since his aneurysms were discovered.  To me it feels so much longer than that, but I suppose in reality it is still relatively new and it will take some time to adjust.  I know that eventually we will find a comfortable new normal.  My hope is, that for Isaiah it will always just feel normal.

Comments

  1. Yes, all the school paperwork, get used to filling that out!

    You might ask your cardiologist for what we refer to as our "emergency response form". We had our cardiologist type up a one page memo with all the details, limitations, medications & their side effects, etc...we attach this form to all the school paperwork and it seems to have helped keep everyone informed.

    ReplyDelete
    Replies
    1. Thanks, Jenn. That is a great tip. I will certainly talk to Isaiah's health care providers about putting something like that together. Every little bit helps, right?

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