The Waiting Game

If you ever need to avail yourself of our health care system, you better be prepared to wait. Wait for an appointment, wait to see the doctor, wait for test results. You will spend a lot of time waiting.

I have found myself once again waiting for the phone to ring. This time, I am waiting to hear when Penelope’s G-tube insertion will be performed. For those of you who are unfamiliar with a G-tube, it is a feeding tube that is surgically inserted into the stomach, as opposed to the NG (nasogastric) tube she has now, which is inserted through the nose, down the esophagus, and into the stomach. The NG tube is temporary- anyone with ongoing feeding issues should get a G-tube. Having a G-tube will allow Penelope to have her hands free- something she really needs to maximize her development. It could also help to reduce her reflux and regurgitation issues- with the NG tube, the stomach is never fully closed off from the esophagus, which can allow for increasing episodes of reflux and vomiting. At any rate, the G-tube will improve her quality of life- can you imagine how irritating it must be to have a tube taped to your face and inserted through your nose into your stomach? So needless to say, I am anxious for her to have this done.

It’s been almost four weeks now since we were seen in the G-tube clinic. I was told Penelope was a perfect candidate for the procedure, and that we would hear within 1-2 weeks as to when it would take place. I was told that there was a 3-month wait for it to be done- I wasn’t happy about that, but at least we were on the road to getting the G-tube. And now here I am, close to four weeks after that appointment, and I do not have a date for the procedure.

There are a couple things compounding my frustration. One is the fact that this is not the first time I have had to wait for a procedure to be scheduled. (If you are new to my blog, you can read about that here). Waiting to get that MRI done was incredibly frustrating. I don’t think I can adequately convey just how tortuous that time was for me. Everyday, waiting for the phone to ring. Worrying about what the results would be. Telling myself, every day, that I shouldn’t be so anxious, that the MRI results would be normal, and everything was going to be okay, but never really being able to convince myself of this. It was awful.

The second thing bothering me is that if Penelope’s swallowing problem had been detected earlier, she would probably already have a G-tube. Now, logically, I know that a baby aspirating during breastfeeding is not a common finding, and so it is understandable that it was not picked up right away. In reality, though, it is upsetting to think that I wouldn’t still be waiting, that Penelope could be getting on with her life, and that maybe her skills would be further along than they are now. And so my patience is wearing thin.

I lodged a complaint today with the hospital over how long it is taking to get the procedure scheduled. I’m done waiting. It is unfathomable to me that a family should be told that they will hear with 1-2 weeks about a procedure date, and then almost a month later, there is still no date set. It is cruel, and unnecessary. I don’t know if this complaint will result in anything getting scheduled. I do know that our pediatrician will back me up and will recommend that she gets it done as soon as possible. And at least I feel like I’m doing something.

Unfortunately, I don’t think this will be our last time waiting for something in the health care industry. But at least, right now, I have this face to comfort me while I wait:

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UPDATE: The squeaky wheel gets the grease. We now have a date for Penelope’s G-tube insertion and we are on the cancellation list. The date we have been given is at the beginning of July, so even if there is no cancellation slot, it’s still not too far away. I’m very happy and relieved to finally have this date.

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2 thoughts on “The Waiting Game

  1. You’re right Julie. Waiting is very hard but unfortunately, a very real part of our medical system. You have to be your own advocate to get things moving along. I hope Penelope is scheduled soon to get the G-tube so you have one less thing to worry about. Take care and good luck.

  2. I totally sympathize with all your frustration. WAITING & PATIENCE (not patients!!) seems to be the operative words; do keep us posted on your progress. Hugs, Heather

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