Rough Patch, Part Three

Rough Patch, Part Three

If you haven’t read the rest of the story yet, start here.

We loaded our son into the car and left for the hospital. It was dark and rain was pouring down throughout the drive to the emergency department. Check-in went quickly. Our son was exhausted and still showing signs of difficulty breathing so it didn’t take very long to be seen. A chest x-ray was ordered immediately and we were settled in to wait for the results. No one seemed particularly concerned so we did our best to relax and wait. We expected to be given antibiotics and sent home.

The nurse came into our room and asked in an unusually timid manner if our son had been seen at one of the other hospitals downtown. We explained a consult we had at one point with an interventional cardiologist, but that we only went once and that doctor recommended against running any tests. I mentioned to her off-hand that we had also done several second opinions at Hopkins. “Why do you ask?” was the next obvious question. Micro expressions danced across her face, all showing signs of discomfort, and she pointedly avoided eye contact. We were to be transferred and they were deciding where. The doctor would be in shortly to answer any other questions. With that she ducked out, having not made any additional eye contact.

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I’m Still Here

I apologize profusely for the silence. It’s not like me, and I’m disappointed in myself for letting it occur. I became overwhelmed approximately the end of November, and I’m only now getting my feet back under me. Again, I’m sorry.

A lot of things have happened in a month. I’ll stick to the highlights and keep this brief. Our son is beginning to do what most people would consider eating. He’s getting more confidence every day in his ability to keep food in his mouth and swallow it safely. A lot of us take it for granted – it’s never been a given for him.

We thought we would need to go in for a heart catheterization. The interventional cardiologist recommended against it because of the risk due to his bleeding concerns, and he wasn’t certain he would find any more relevant data than we already have. There is something concerning going on with our son’s heart, enlargement of one of the chambers, and there’s no apparent cause. So far he shows no visible signs of heart difficulty.

I haven’t forgotten you, and I hope to begin writing on a weekly basis again soon. Thanks for staying with me.

The Anchor

Someone has to keep it together when everyone else is falling apart. Usually, it’s me. The world around me dissolves into a panic and I do my best to ignore the whole production. I don’t ignore the problem. That I’ll be attempting to resolve while everyone else is still in shock it even happened.

When others around me realize I’m not in a panic something magical happens. They compose themselves almost immediately. First, they have to stop panicking enough to look around and realize what other people are doing. It does, however, pull everyone back into a state of calm much sooner than they would find it themselves.

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Planning for Thanksgiving

No matter what your situation, the hustle and bustle can be a challenge. Our son’s vomiting and feeding tube add an additional level of complexity. Family drama on top of it all guarantees this season will be an especially challenging one. I’m certain I’m not the only one dealing with this, so I decided to share some of the things I’m planning in order to make the holidays as joyful as possible. I hope they help, for both of our sakes.

We’re hosting Thanksgiving this year. It’s the only way to avoiding missing out on the food trying to manage the toddler’s tube feedings and vomiting. Dinner is the high point of Thanksgiving, and without me managing the kitchen it would be impossible to keep dairy and eggs out of as many items as possible. This can be as simple as pulling our son’s food out before the butter goes in, but that’s difficult to do without being underfoot in someone else’s kitchen (mostly because wherever I go the toddler is not far behind).

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Our Family, Gov’t Style (Silly)

Our Family, Gov’t Style (Silly)

We have three people in our home, Mom (Me), Dad, and the Toddler. I’ve realized lately how much our family function resembles the structure of the U.S. Gov’t. Weird I know, but allow me to explain. The Toddler is most definitely President of our family. I’m Congress, both branches (I do what I want, or so I tell myself). Dad is the Supreme Court.

Mr. Toddler has the astounding ability to veto each and every rule I attempt to issue. He didn’t use this power quite so frequently, but as we reach the terrible twos it’s an almost constant battle. Thankfully, I can override vetos since I’m the ENTIRETY of Congress all wrapped into one (take that, partisan brinksmanship). I do have to be a little careful because the Toddler is not very fond of having his vetos overridden, and doing it too frequently results in even more vetos (meltdown, yikes). Don’t even get me started on executive orders.

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Information to Share with Family Members and Friends

Some tubie parents are fortunate to have understanding family and friends. The love and support that comes with this arrangement is beyond value. For most of us, that doesn’t seem to be the case. The vast majority of parents with tubies are repeatedly told how much better of a job others could do if they were in our position. There are many things said so awful I don’t feel comfortable sharing them. No one deserves to be treated like this, much less parents of a child with a serious medical condition.

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Toxic Relationships Must Go

What do I mean by toxic relationship? There are a lot of different types. Someone can be…

  • Physically abusive
  • Emotionally abusive
  • Controlling

I’m sure there are others, but these are the main ones I’ve come across. Your child, especially a special needs child, is the best reason in the world to put an immediate end to these types of relationships. Typically these are discussed in the context of spousal abuse, but it also applies to friends and family members as well. Here are some examples of toxic behavior…

  • A family member hits your child out of anger for misbehaving with no communication as to what they did wrong or how to improve.
  • A friend, angry that you no longer see them, tells you how lazy you are for not getting together more often. They are persistent and continue to put you down, even going so far as to accuse you of making up your child’s health problems to avoid them.
  • A family member insists you make medical decisions for your child in the way they would like them made. They constantly seek information and even go so far as to call doctor’s offices to try and get information.  They may even lie to the office staff about their level of involvement in your child’s care in order to skirt HIPAA regulations.

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