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Chronic illness: the parts we don't talk about

Category Archives: bartter syndrome


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Lord help me please. It’s tough being a mum

I promised myself that I would never do this. But I did. I knew it would hurt my child but I did it anyway.

I let two adults hold her down while she was kicking and screaming while another performed a medical procedure. And one of the adults holding her down was me.

But how did we get here? How did we get to this sunny day, full of hope of the lightheartedness of sumer, but doused with an icy blast to my heart like the arctic ocean has crashed down on me?

It’s a long story but I will try to keep it short.

She has developed a fear and trauma about having her mickey button changed. She’s been through EMDR to deal with the trauma. She and her psychologist made a plan to deal with some of the scary things:

  1. Seeing the whole in her body where the mickey sits. I’m not surprised she is scared, it gives me the heebee geebees just thinking about it. So what’s the plan? She gets to watch the mine craft films on youtube that she loves
  2. Seeing all the medical equipment laid out makes it feel like an operation. So we would keep that covered.

Everything was arranged. The psychologist was there. She had picked out her present that she would receive after her new mickey would be replaced.

Then she woke up this morning and it all went to hell. Her first event of fear and anger was pretty bad. So upset she started vomiting. I was taken back to the last time her mickey button exploded and I had to be a tough mama.

How do you get through to your child when she is out of her mind with fear? You can only tell them that you hear them. Over and over until they calm down.

The major event was at the hospital. We had agreed that J and I would not be in the room. F wanted it to just be the psychologist and the nurse. It was time and then she went wild. I can’t even call it a tantrum because it wasn’t. It was so much worse. It was a frightened girl who would do anything to make sure that she could day no.

I wholeheartedly believe that she should be heard and that we should take a “no” from a child seriously. But without her treatment, she would die.

And her treatment isn’t nice. Half the discomfort she feels comes from her medicines. And we can’t afford to have her refuse treatment. Ever.

If I listened to her no today, what would I do when she needs an IV? An IV placement is painful and she has really thin veins so it can take 30 minutes or more to secure one. 30 minutes os someone poking a needle in her. What if she says no then?

And her IVs always need to have potassium. That burns. What if she refuses that? Her potassium levels can drop so quickly that she could have a heart attack. It may seem far fetched but sadly we lost someone in the Bartters & Gitelmans community this way about a month ago.

With her condition, when she needs an IV, it means that she is seriously ill and needs it right away. Not when she has calmed down. Not later. No time for discussion. Now.

If I listen to her “no” now, it opens the door to her saying no more often. And we can’t do this. I can’t do this fighting every time.

I can’t let her say no. It’s either take the treatment or get life threateningly ill really quickly. And then give her the treatment when she becomes unconscious. And providing it’s not too late, maybe her kidneys won’t get damaged. Maybe she won’t die.

So that’s how I came to be holding her down on the hospital bed. Her arms being held by me, her legs by another nurse. And a third nurse changing her mickey button.

Her father carried her to her next appointment (it never stops with a chronically ill child). We bought something for her to eat along the way. She smiled eventually.

We will follow up with the psychologist later. She had never seen anything like this in her entire career. The strength of resistance. But we will regroup and look at how we can support F so that it isn’t so traumatic next time.

But I feel like crap. I want to eat bread. Even though I’m on a 3 week gluten free diet I want to scoff bread there’s a wheat famine approaching. But, given the very real medical reasons behind my gluten free diet, that would be like bashing my head with a sledgehammer.

So why did I do it? Why did I choose to be the one in the room with her? I know that J would have done it. But I just knew that I could get her to relax her stomach muscles. You see, she can scream, kick and relax her muscles at the same time. I don’t know how she does it, but she can. You see, it’s impossible to put a mickey into the whole in the stomach if your muscles are tense. We know, that’s one of the chapters of this story.

And she did listen. Even through the screaming. Even through the kicking. She listened and relaxed her abdomen for the change.

I just hope that she really heard me when I said

“I didn’t want to hurt you. But you need this medicine. Your illness sucks and I wish I wold change it but I can’t.”

Oh man, today it sucks to be a mum. Lord, help me please.

 


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Out of the mouths of babes

From the beginning we have been very open about Fs illness – with the family and with her.

Her condition is incurable and she will always have it. I have said that myself so many times that this incident really caught me by surprise.

J took the girls with him when he went to the hairdressers, While there, F needed her medicine (she gets it every hour) and the hairdresser was asking about it. And the really typical question came

“Can they fix it?”

F answered

“No. I’ll have this forever”.

J recounted this when he got home. And I felt a little stab in my heart when he repeated what F had said. It was like someone took a knife and just nicked me in the heart.

She was so matter of fact about it. For her it is what it is. And I’m immensely proud of her for her attitude.P1040632

Yet it just seems so painful to me when I think of my little 7 year old girl saying that she will have this illness forever.

Maybe it just makes it more real.

Maybe it’s because it puts the truth into the context of her life.

Whatever it is, I guess it just goes to show that acceptance of this illness doesn’t mean that it’s ok that she has it.


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Yay for carrots!

I’m disproportionately excited about carrots.
Why? Because this is the 3rd vegetable that F will eat. It’s taken us 7 & a half years to get here but Yay! (As I write this I had a flash back to 6 years ago and a dietician suggesting I try carrots for F as part of the “she won’t eat anything what should we do” plan.
Well, salt fiend that she is, finally she likes that they are sweet.

So what veggies have we got in the bag?
Green beans
well, mostly the beans inside the pod (she picks them out herself)

Sweetcorn

ah, corn on the cob with lots of salt and butter

Carrots

roasted, of course. The best way to cook carrots.

Coming up next! Butternut Squash

actually she likes this already. She thought the roasted orange delights she liked were carrots. And like the fiend I am, I went along with it. Then one day she caught me out and I thought “oh pants”.

She suprised me. She wanted carrots  so I roasted some. She ate them.

so now no matter what I’m cooking for dinner, if she wants carrots, I put on the oven and roast carrots.

whatever it takes. I want her to eat so badly, I’ll do anything.

well, except when she asks me at 7pm. Then I make her wait until the next day. By the time they would be ready it would be bed time.

Oh, and if we don’t have any carrots in the house, then she’ll have to wait until the next shopping day.

Ok, I won’t do anything so that she will eat. But I do try very hard to have the things she likes to eat in the house. But if we are out, we’re out. Maybe she will try something else.

 

Note: I hate wasting anything so I just have to say: I use the small oven. I wouldn’t turn on the big oven just because she wanted carrots. 

Oh and she eats tomato soup and ketchup (Heinz I love you). But not together, eww.

 

 

 


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Tough love

for those who know me on FB you know that Fs Mickey button exploded. Again.

She’s still traumatized from the first time that happened. And from the last time the nurse changed (when the nurse had to push it through her abs of steel).

So my dear daughter, when I heard what happened at school on Monday I knew that it was going to be another really hard day for you.

You walked in knowing what was going to happen (it’s at these times that I wish you weren’t so smart).

I held you as you cried your heart out. Told you it was going to be ok, both of us knowing that there was a bump in the road to “ok” that you needed to face first.

I wish I could have held you until your fears disappeared. But we had 30 mins to get to the hospital and get a new mickey in place before the nurse left for the day.

So I put on my firm, tough mama voice and made you come with me. You were literally sick with anxiety. I wiped your mouth and then we had to keep moving.

We needed your cooperation: when you tense, your abs create a solid wall where it’s almost impossible to insert a new mickey into that hole in your stomach.

So we practiced at home, in the car, on the hospital table. And somehow you managed to scream and relax your abs at the same time (holey moley batman, how did you do that?)

I’m sorry I had to make you choose. Choose between admission to hospital and a potassium IV (that burns people, it burns your veins) or let us change the Mickey.

Im sorry. I hope you believed when I said I wished it could be different.

I wish that your smile on receiving the cuddly monkey toy from the nurse went all the way in, to your soul. I wish that it could heal the scar on the inside as quickly as it changed your expression.

I wish I could have held you until your fears were gone.

And I hope that one day you will understand that I was doing my best for you: making the tough decisions.

Tough love. Sometimes it sucks to be a mum.


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Sometimes we want to be afraid

Last sunday we went to a creativity workshop and open day with the girls and they loved the freedom to get really creative with their painting … and not have me worrying about getting paint on the floor. (Remember Monica in Friends? yeah, sometimes I’m like that “I want to control the fun”, keep it tidy. Shaking my head in shame).

On her way back from washing her hands F ran into a wall (in a straight, empty, corridor. I mean, how is that even possible?).

Turns out she thought she had reached the studio, turned left, her shoe flew off and she kicked the concrete wall. Hard. With her big toe. (is it wrong that I had a moment of relief at this point? the fact that she meant to turn means a lot to me)

It’s not broken. We got it checked out in the way that parents of chronically sick kids do: 4 days later. Don’t judge. The last thing we want is another trip to hospital. We do enough of that already. And it’s the last thing our kids want too. But that’s another story.

She rested up for the whole afternoon. Noone could touch it or sit on the same sofa as her, just in case they touched her (not just her toe, we couldn’t come within 1m of her).

Bedtime: the obstacle of skinny jeans

“I’ll help you with your jeans. We’ll be careful when we take them off” I said, thinking that this was a good thing. Oh, how can I still keep on forgetting who I’m talking to?

She processed this and realised straight away that this might hurt. She started crying. Really hard. This lead to one of the most beautiful moments I’ve had with her; the two of us sitting in the bathroom, she on the toilet, me on a stool.

“It’s time to take off your trousers. While you’re sitting, I’ll pull them off” I said.

“No!” she cried. And cried. “I’m scared!”

I tried to calm her down:

“I haven’t done anything yet. Please calm down. You can cry if it hurts but please don’t cry because you think it’s going to hurt.

You don’t have to be afraid. Do you know that you can choose to be afraid or not?”

She said “Yes”. (So she does listen to what I say to her).

“Do you want to be afraid?” I asked. And this is when I saw her at her most beautiful: honest, open and accepting of herself

“Yes, I want to be afraid” she replied.

So I let her. I put my arms around her and let her be afraid.

She cried some more. Then she started talking, laughing.

She let me take the jeans off her uninjured foot. Then she let me take them off her other foot. There was a lot of pausing and checking in. She was still scared, but much less so.

It hurt a little.

I carried her to bed. She slept on her back the whole night, not turning like she normally does. She told me how she was able to do it: “I kept telling myself, don’t turn, don’t turn. And I didn’t”.

This experience taught me a couple of things:

  1. Just how amazing she is. I know it, but now I see her even more deeply.
  2. We don’t need to make our children happy all the time.

Sometimes we get so caught up in trying to make our kids happy that we forget that they want to feel other emotions too. She wanted to feel scared. When we honour their feelings and their choices, we honour them. We tell them that they matter.

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“I want to be normal”

For so long, F has consumed very little food by eating. Apart from the nausea, the extremely sensitive gag reflex and the throat spasm affecting her ability swallow, there has been another factor: her teeny tiny bites.

No matter how small a piece of food you give her, she will always find a way to pick a bit off and eat that. Crumbs. Her bites have been crumb size.

With increasing regularity she has been taking bigger bites, always showing us “look at the size of this!” and then putting it in her mouth.

In the last couple of months she has actually been putting enough food in her mouth in one go to fill her mouth; enough to puff out her cheeks even. It takes effort. Sometimes you can see that she is gagging and with the incredible control that she has, she stops herself from vomiting. She is proud of herself for setting a challenge and then making it. We cheer her on.

I never thought much about it (I only drive myself crazy trying to figure out how I can make her eat).

It’s part of her journey of learning to eat. It’s the hard way because it is conscious. She actually thinks about how to move food around her mouth, how to move it to the back so she can swallow. Next time you take a bite, pay attention. Do you even know how you use your mouth to eat? Well, unless you are a speech therapist, you probably don’t know. None of us do. We learn to eat before the age of two and we are not aware of what’s going on. Food goes in, we chew, we swallow. End of story.

For late eaters like F, who started eating much later than that, it’s a conscious process. They are aware about what’s going on when food goes in the mouth. Quite frankly, it’s quite a gross process.

So as parents, we encourage eating (I wrote about how we do that here and here) and allow her to set her own pace. If she wants to take teeny tiny bites, then ok. It will just take longer.

Then something happened and my heart paused, then beat again. Tears burned at the back of my eyes.

Just recently she told J why she does this. And this is what she said:

“I want to be able to eat like you guys do, you know, normally”.

 

We forget how much children are aware of. They don’t talk about how they feel different but they do feel it. They don’t say that they feel excluded, left out from something that everyone else can do (like eating). But they do feel it.

We should not take silence as “everything is ok”. If we listen carefully we can find out so much of what is going on in their lives.