How to deal with having a chronically sick child

I am not writing this article because I know how to cope with having a chronically sick child.  I am hoping to figure that out–because the fact is that every three weeks since Child #2 was hospitalized last March, he’s been sick for about a week.  We are trying to figure out why…

I’ll be the first to admit that when any of my kids get sick, I’m glued to their side.  I don’t feel like doing anything other than being there by them and doing whatever I can to help them feel better.  This means that I become a mess (because I don’t want to even leave their side for a moment to take a shower, despite the fact that I would feel much better, at least), and the house becomes a mess.  Granted, I recognize how unproductive this is, but it’s my natural response and what has happened time and time again (since we’ve dealt with so much sickness time and time again lately).

Our house really started getting disorganized back in late Feb. when my first trimester symptoms kicked in.  Add on top of that the fact that I was still adjusting to working outside of the home.  Piles happened.  Then, when our son was hospitalized, it got worse.  I was hardly ever home.  My husband–bless his heart–took time to organize things or get rid of things.  It did help, but it was not according to the established systems (because I established them and they make sense to ME)…

Then, we made it through the rest of the school year (and my first trimester) as best we could.  Summer vacation wasn’t the time to put things to rights, because it was the time when all those house projects happened.  So, things got displaced even more–a necessary happening, but still a contributing factor in all of this.

So anyway, not only am I struggling to cope with a frequently sick child, but I’m struggling to know how to function in my own home.  I recently discovered a blog called “Simple Organized Living”, and I appreciate her strategies and am trying to implement them (in bits, as I do for everything these days).  One technique is to record long-term things on a calendar, and then each night fill out a detailed schedule for the next day, transferring anything from the long-term calendar to that day.  Being prepared for the day when I wake up and having that plan on paper for me seems like a wise idea.  However, by night time I’m just done and I haven’t been good about really establishing this routine yet.  I’m not throwing away the idea, though, because I think it’ll be a helpful element post-baby’s birth.

Anyway, coming back to the role that Child #2’s health has had in all of this…he tends to get a fever that doesn’t go away for 5-7 days.  Essentially, he’s healthy for two weeks and then sick for one.  Clearly, our plans for “life” have to shift, because as much as we want to keep life moving, it’s generally hard for him to have to travel in the car (especially the first couple days of his fever) and produces nausea.  Not having his normal appetite, he also has low-energy, so that plays a significant part in how we must structure life during that time period.  Even once he’s better, it still takes time for him to build up his energy again.  I felt very badly watching him at his last swimming lesson because he clearly was struggling to do what the teacher expected of him, but BOY did he try!  I was torn between pulling him out of the pool and just feeling proud for how hard he was working.  He made it through and had a big sleep that night, not seeming worse for having expended that energy.

Except for one time, we always took him in to the dr. when he got sick.  Until this last month, the cultures and blood work were coming back negative, so there was nothing we were told to do other than wait it out; however, in the past 3 weeks he’s had two positive strep cultures and we were told that his tonsils need to come out.

As much as I want this over with, just last week we took him for a biomedical evaluation and won’t get the results back for at least another month.  I was able to consult with the new dr. by phone a few days ago, and she encouraged us to hold off on a tonsillectomy because if he truly has a systemic strep infection, there is a better, more holistic way to deal with the infection than remove one body part (which has the potential to be healthy again and continue on with it’s beneficial function).  While I’m not quite sure yet how that goal will be achieved, I feel awkward being the middle man trying to tell one professional what we’re doing at this other place.  I would much rather that the two doctors consult with each other and come to a consensus about what is in his best interests.  The new dr. said something about composing a letter to our family practitioner, and I guess that’s a start.  The whole process is still unnerving for me, and I look forward to having the results back so we can get our boy healthy again.

One thing that I have learned is how much respect I have for parents of terminally ill children.  Despite that my little boy has been pretty sick, I highly doubt that whatever he’s dealing with will ultimately bring about the end of his life.  I have every reason to believe that he will be with us for years to come, God-willing, and I keep asking God to help me praise and serve Him even during the times that my son is sick.  While I’d much rather see an end to the sickness, I am also asking that, if it’s a cross He wants me to bear, that I will do so with my eyes fixed on Him.  “Shut my grumbling mouth, Lord, and let praises abound instead!”  After all, He wants us to praise Him in all things, and that’s my ultimate goal for how to cope with having a chronically sick child, even if I don’t know how to deal with or fix anything else about it!

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One Response to How to deal with having a chronically sick child

  1. I actually heard from the new dr. this afternoon. She wanted to share with me the letter that she composed to our family practitioner–and I was really pleased with what I heard. She read quickly so I couldn’t fully process what she was exactly saying about the potential treatment plan (not that it can be completely formulated until we get the results back), but what I could absorb made sense and gave me peace of mind. Hopefully our dr. will recieve it well, too, and maybe learn something (or at least be willing to forge this partnership for our son’s sake). As the new dr. said, they share interest in their mutual patient’s well being! 🙂 I have NOTHING against tonsillectomies, but it has always seemed to me that the health of his tonsils are one tiny part of a larger health issue, and that for my son to truly heal, we have to deal with the big picture–not just the tonsils. If it comes down to needing to remove them–GOOD RIDDANCE!

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