Ups, Downs, Ins and Outs

Here is one thing I’ve learned: when you are asking yourself the question, “Should I go to the hospital?”, 99% of the time the answer is YES. I’m sure there are many doctors who would disagree with me, having had their time wasted by too many kooky hypochondriacs, but in general only good can come from making the decision to go.

So. I’ve had to make the decision to go twice  in a 24-hour period.

Our Three Year Celebration was not quite as I’d envisioned. We went to the cottage for the weekend, and on Saturday Gavin was out-of-sorts and a bit moody. Sunday morning dawned and all was well, but by 11:00 he was sitting on the couch, and the barfing began.

He has now been officially diagnosed with Cyclic Vomiting Syndrome. I have met with a GI specialist and she has confirmed this. She prescribed a daily medication to try to control it, and we also have in our pocket ondansetron to try to shut down an episode at the first dry heave. This syndrome is related to migraine, and strikes just as randomly, but is also believed to be related to anxiety. It can be triggered by emotional stress or certain foods. It usually starts in children aged 3 and up, but adults can suffer too. Many kids grow out of it, as they learn to manage their emotions and stress levels. And my kid suffers from anxiety. So does his mummy. I wonder why?

Coming to the realization that all of the times that Gavin has been sick since October have been due to this rare, inexplicable and incurable syndrome has been difficult for me. We’ve spent so much time looking for underlying causes, fearing the shunt, fearing relapse, wondering what kind of crazy virus this could be. Dosing him with totally useless antibiotics but being deluded into thinking they were working. And all of that worry and speculation was meaningless, because this condition is what it is.

Here are the beliefs that I’m now throwing out the window: my son has a weak immune system due to treatment that leaves him exposed to every bug going, my son is prone to ear infections, my son must have some undiagnosed food allergy.

None of the above are true, and now we need to come to grips with how to manage this sickness so it doesn’t take over our lives anymore. Two weeks ago, an episode arose, and using ondansetron, hydration and rest, I managed to shut it down the same day. It was back four days later, and two days after that, but we kept it under control and had two weeks of wonderful good health.

This episode we haven’t been so lucky. We tried to shut it down, with no success, and yesterday, after 24 hours of barfing, I took him to emerge for IV fluids. If you have never seen anyone truly dehydrated, here is what it looks like: drowsiness, irritability, skin hot and dry to touch, heightened heart rate, sunken eyes, dry tongue. It is not pretty and very dangerous.

I have seen my son look like this too many times to count. I have measured his ins and outs. I have fussed over him for endless hours, offering sips of water, juice, and freezies. I have noted each and every vomit and tried every voodoo- witch-doctor-home-remedy in the book. I wish there was a word in English that expressed the level of my frustration, because frustrated doesn’t begin to cut it.

We were let go yesterday after Bean had had some fluids, some freezies and biscuits. He was back to his usual chatty self. On the way home he vomited again in the car. We crossed fingers that it was the last hurrah. But no. This syndrome, which seems to be a live entity, is never done in less than 3-4 days. It is always 3 to 4 days, and nothing that we do can stop that.

This morning he seemed lively, drank water and ate a Popsicle. I held my breath. By 9:00 it had started again. By midday he was listless. I packed another bag, grabbed the umbrella stroller that he is now far too big for, and put him in the car. On the way there I tried to keep it light, but when I asked him if he was okay, he replied in a stony little voice, No, I’m sad.

And he has a right to be sad. The sh*t this child must endure isn’t fair. He knew he was going to get another IV and he was not happy about it. Who would be?

Today was a wild day in the ER. It took more than an hour to get in a room. We saw a doctor two hours after arrival, the nurses came to do the IV an hour after that. They tried two pokes with no joy. They left and called IV team. IV team came 45 minutes after that. They tried two pokes with no joy. On the fifth, count it, FIFTH try, they got a decent site. Gavin was desperate and exhausted. The fluids finally started running at around 5:15. I’d arrived at the hospital at 1:30.

It just seems ridiculous to me that there are days that the hospital can’t seem to get an IV started for at least four hours after arrival. But there’s no point in complaining, because it’s just a reality we have to deal with. But still.

The end result was that he was admitted for overnight hydration and observation. We got into a room at around 6:30, and he was still very sleepy and feeling unwell after I left him with Hospital Daddy.

I’m so saddened for him that this is the routine of his childhood. That he has to miss school. That he is going to miss the year-end picnic with his class tomorrow. That he may miss the last day of school altogether!

I am attempting to put myself in rally mode, to try to figure out how to beat this f**ker. I want for my son to never have to spend another night in hospital or endure five needles to get an IV. I am open to any and all suggestions you may have as to how to do this!

p.s. Excuse my language today, given the circumstances, I think a little profanity is warranted.

7 Responses to “Ups, Downs, Ins and Outs”

  1. Anonymous says:

    words are failing erica … in their place: tears. I know you will cope and gav will thrive, but still – how unbelievably effing unfair! big big hugs that i hope to be able to give you in person tomorrow evening. xoxoxo

  2. Aunt Karen says:

    Oh yes, curse as much as you want!! Totally warranted. I think you said it, “it is what it is”. The word “chronic’ comes to mind , which means a continuing malady of some sort. I personally think that Gav will grow out of this syndrome, but of course I have no evidence for this. What a little trooper Gavin is, and you and Craig are too. Think of an ocean wave….up and down up and down…you are going with it…when you are up you can see land and when you are in the trough, you can’t see anything. It doesn’t mean the land has disappeared. You have to maintain the faith in that ‘land’. It’s there, and waiting for you. All will be well. Breathe deeply and trust in miracles and love. sending you a ‘raft’ of love..hang on.

  3. Ryan Pardey says:

    Once again, sorry to read of more vomiting. I hope that somehow he can just outgrow this? There is nothing more frustrating than having a serious problem with no solution. I can’t even begin to imagine. Chin up. If anything, with the lows there are always highs.

  4. Aunt Bev says:

    So sorry,Erica, to hear about unrelenting vomiting that turns your life upside down. There has to be another approach and cure for this, Perhaps there are parents out there to help, who have children going through the same thing. Perhaps they could share helpful advice with you. Please ask for help, put it out there, and hopefully you will receive answers to your questions, and at the same time receive much needed comfort and support.
    Thinking of you, with love, and wishing I could be more helpful.

  5. Meaghan Roche says:

    So sorry to hear about poor Gavin’s illness. Caitlin, Liam and Allanah have all been sick recently with a stomach bug. It hasn’t been nice but it has been nothing in comparison.
    We are always thinking of you guys and send you all our love.

    As for advice, I wonder if a naturopath might be able to help out?

  6. Aunt Bev says:

    Hi again, Erica – hopefully Gavin is recovering and you are on your way to your parents cottage this weekend. I decided to google CVS in children, and because there are milk allergies in our family, including Evelyn & Lauren, I wonder if Gavin’s condition is triggered by cheese and chocolate. Supposedly, these favourite foods of the population can trigger an episode of CVS, besides other triggers,that you already are aware of, stress, etc. Erin has found many delicious substitues for Evelyn – ice cream, yogurt, that are dairy free. I have faith, Erica, that you will explore every avenue, and eventually with the help of the medical community, including a naturopath, you will find a way of controlling this. Hoping this info will help.

  7. Lisa Lamka says:

    Hi Erica. Sending you all our thoughts, love and prayers. Hang in there, Sweetie.

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