The Plan

The Gavinator is watching Shrek. He is feeling most terribly yucky today.

We went to the hospital this morning, first to meet with neuro-onc., just cuz, and then for a 10:45 appointment with Dr. Dirks. I thought it a tad ambitious that our contact nurse booked us for a 10:00 meet with them, to supposedly have us downstairs 45 minutes later.

When I have never, ever, got out of cancer clinic in less than 2.5 hours. So I showed up half an hour early. And sat there for over an hour. And then left without seeing anyone to go to the appointment with Dr. Dirks.

The ineptitude and inefficiency of the onc.-clinic process is maddening, but if I allow them to push me over the edge then they win. So I fobbed my son off on a volunteer and sat there on Facebook for an hour. Ha, I win! 

Neurosurgery clinic is a different beast. They book very few patients per day, so you’ve got check-in, a short wait, put into a room, a brief meeting with a neurosurgery fellow and then about ten minutes of face-time with the doctor. Which is exactly how things went today.

So we have concocted a plan. Sort of. Dr. Dirks is not sure exactly what is happening with Gavin’s shunt or how he would like to fix it. Fixing it definitely means replacing it. In order to gather more data, he would like to do intra-cranial pressure monitoring. Ugh, complete ugh.

I am not Googling this type of monitoring because I don’t want to know. I really, really, don’t want to know the risks, the side-effects, all of it. The Internet has not been my friend over the years – there is just too much crazy information out there. I don’t want to have to do this to my son, but I understand the need to do it.

Deep breath, here goes: they need to drill a hole in Gav’s skull and insert a small wire into his brain. They will leave it there for 48 hours while we hang out on the unit. They will see what is happening with his pressure and (please) get some answers.

The question is, when is a good time to do it? Is now a good time, the last week of summer when we are supposed to be on holiday with my family at the cottage? Next week – when he is meant to be starting school? Or the week after, when his Nana and Pop are arriving from Australia!

Dr. Dirks issued instructions to decide when and whizzed out of the room. Craig and I discussed the issue. This week, next week, the week after? Can he hold on that long? I didn’t want to commit to possibly spoiling Gavin’s birthday (8 days away!) or his visit with his grandparents. I thought maybe we could hold on a couple more weeks, and said so. Fine. Craig went back to work and I dragged Bean back up to clinic.

Most of the time, if Gav stays flat he feels okay, but I forgot the stroller and had to carry him upright for awhile. A few minutes after arriving upstairs, we were dashing to the bathroom to barf. The second he was finished, they called him in to clinic. Timing.

We saw the neuro-onc. fellow, he and I chatted while Gav lay palely on the table. I asked to see the staff doctor, only to be told she had gone off on rounds and would be back in an hour or so. Perfect. So we left.

I managed to slowly carry Gavin all the way back to the elevators and down to the car, and hoisted up him to barf in a garbage can in the parking lot. Someone getting on the elevator asked, “Is everything okay?” I almost laughed (or cried, it’s hard to tell which sometimes) but the true answer to that question is so long and complicated that we would’ve been there all day, so I just said, “Yes, it’s fine.”

We arrived home and put Gav back on the couch. He vomited again. I gave him a dose of ondansetron and he went to sleep for a couple of hours.

Somewhere in all of this, I changed my mind about the monitoring. We need to do it now. As soon as we can. I called Dr. Dirks’ office and booked him in for Wednesday, so we will be back on the neurosurgery unit for a few days this week.

Yes, it is not ideal that we will miss our week at the cottage, and his birthday celebration may not be quite as we envisioned. The first day of school may be out too. But we are making the best decision we can given some fairly awful choices.

5 responses to “The Plan”

  1. Amanda Martinez

    Dear Erica

    I just read your posting and blog and want to tell you that I am sending you healing from Mexico for Gavin. I am going to be thinking of you, Gavin and your family and sending prayers that all goes smoothly. Deep breathes and know that all your friends and family are holding Gavin in their hearts for this always and for this procedure. It sounds like your heart told you that now is the best timing. Just focus on your amazing boy and take deep breathes.
    Sending you all my love
    Amanda xoxo

  2. susannah

    Sending you love and hugs, always. Susannah

  3. Phillip Zammit

    We are all thinking of you guys and God bless to Gavin. Phil

  4. Lacey Shay and Phil Ferguson

    Erica … I cannot even imagine your pain and worry. What an amazing child you have and what incredible love and tenacity you all possess. Our thoughts and prayers are with all of you. xoxoxoxo

  5. Erin

    Tough decisions, hang in there…I will send all my best energy that Gav is feeling good enough to enjoy his birthday, back to school and the visit with family from Australia… lots of love Erica!

    Erin
    xo

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