I’m still in slow recovery mode after a frightening 48-hour period.
It began on Sunday. (Mother’s Day, naturally.) We’d spent the night at Bubby and Da’s house and Gavin slept kind of poorly but woke up bright and cheery. He was fine until about 9:45, then said, I feel weird and wanted to lie down. He had a fever, but not too high, about 38.5. Pretty soon the vomiting began and was pretty consistent until evening. We spent the day pushing fluids only to have almost everything come back up.
When we got home, he perked up a bit and was chatty during his bath, but then had several barfing episodes in the night. We thought it had all cleared up by Monday morning when he requested his breakfast as usual, but a short time later he was lying down again, feverish and dozing in between vomiting sessions which were now taking place every ten minutes.
My dilemma in these situations is that I don’t know if I can chalk Bean’s illness up to a bug, or if shunt/tumour stuff is at play. I opted to take him to our pediatrician first instead of the ER, just to see what she had to say. Bubby came over to help me out and Gavin barfed a couple of more times on the way to the doctor’s office. He was starting to seem fairly listless, and I was getting really worried about hydration, as he had not been able to keep any liquids down that morning. Once Dr. Jain had a good look at him, she recommended that we head to Emerg. as we couldn’t take any chances that this was a shunt issue, and could also run some IV fluids into him.
Back in the car and we high-tailed it to Sick Kids, arriving there at around 11:45. We were fast-tracked into a room because of Gavin’s history and hoped to see a doctor shortly. The whole process then came to a screeching halt. A nurse came to see us and did vitals. A long, long, time later a medical student came in and took the history and did another check. We didn’t see a doctor until around 4:00, so about four hours of waiting in that room, while Gavin dozed fitfully and was clearly not himself. He was not responding to my questions, but would shake his head or give me a terse nod.
I had already worked myself into a state of panic. Four hours is a long time to sit around and mull the worst. Craig had joined me and Bubby had headed home. The first doctor we saw was one of the ER fellows, and it was her opinion that a shunt series X-ray and also CT scan were definitely called for. She also told me that she couldn’t consider it “just a bug” because of how long it had gone on for and also because diarrhea was not present. This is when I felt everything spiraling out of control. We went to X-ray fairly quickly but were not given the results for several hours. At that point, the nurses had still not started an IV and we were under instructions to keep Gavin NPO. The reasons for this order were a bit fuzzy but I guess the thinking was that we might have to rush him into a shunt revision surgery?
As I simmered in a stew of my own anxiety, the ER fellow and staff doctor returned to inform me that they had consulted our neuro-onc. team, and Dr. Bartels was NOT of the opinion that a CT would be beneficial, and that they agreed to watch and wait. The plan was adjusted to get some fluids into him and then see how he reacted. At that point, it was past 5:00, and Gavin hadn’t actually had any vomiting since about 1:00, so there was a definite improvement there.
Shift-change. Ugh. Anyone who is familiar with hospital life knows that shift-changes in the midst of a crisis are the worst. The next docs and nurses up will directly contradict the orders of the previous shift, and that is exactly what happened. The neuro-surgery fellow came around and felt that a CT scan was absolutely necessary. The new ER staff doctor agreed with her, and the neuro-onc. fellow on call seemed to agree too. Actually, everyone agreed that an MRI would be the best possible solution, but there was no way that we could get Gavin into MRI last night. In the face of all this resolution, how could Craig and I say no? Although we had hoped to spare Beanie the extra radiation from a CT scan, we agreed to do it.
Finally, at around 6:00, we got an IV in – very traumatic for Gavin, and then FINALLY got some fluids running. Over six hours after I’d arrived at hospital with a dehydrated child. By the time we were taken to CT, it was getting on towards 8:00 at night. By that point, Gavin had got his fluids into him and was pretty chatty. He kept saying, I need something to entertain me, and I want to go home, I miss my toys. We tried to keep him distracted with a constant infusion of Treehouse and colouring, but he wasn’t buying it. Gavin has not had a hospital stay since his shunt revision last July. When he goes to MRI, they knock him out before putting an IV in and then take it out as soon has he wakes up, so all of this stuff was pretty freaky and unfamiliar for him. It was all too horribly familiar to us.
We went to CT and proved once again that small children can lie still if you just ask them to. The tech was wowed by Gavin’s three-year-old lying-still prowess. I paced the hall outside while the scan went on and vented to Bubby and Da on the phone. How familiar that stretch of hallway is to me – with its sea-animal motif and bench-radiator that I have curled up on countless times. Last night I huddled under my crappy hospital blanket and prayed with everything in my being.
Once back in the ER, the neuro-surgery fellow quickly looked at the results and let us know that there was absolutely no sign of shunt malfunction. That, and the fact that Gavin was now sitting up in bed saying, I’m starving, when can I have something to eat? was enough for the staff doctor to draw up the discharge papers straightaway and send us on our way.
I cried tears of painful relief and tried to pull myself together after 11 solid hours in the ER, not eating, crying, trembling with sweeping waves of panic and anxiety. We quickly got in the car and Gavin talked the whole way home, as per usual. We put him to bed and he devoured a piece of toast with butter and Marmite. He passed out after that. Craig and I drank a glass of wine on the couch and tried to absorb the insanity of what had just happened.
So, yes, I’m relieved. But I’m also still anxious. Why? Because the doctors planted the seed of doubt. I mean, I was already anxious anyway, but the result of the CT tumour-wise is that they couldn’t really see anything but these scans are not accurate so they won’t say anything with any certainty. Doctors do not like making absolute statements, and certainly not ones that could lead to false hope. Hope, false or not, is all we’ve got. There are a lot of amazing people in our life who blindly and consistently believe that Gavin will never, ever suffer a relapse. These people are wonderful and I love them, because I, Gavin’s mum, have a really hard time truly believing it. It almost seems that the more time passes, the more anxious I get. I have days of crippling panic attacks as I watch him a little too closely and wonder what that weird facial expressions was, or why he’s rubbing his eyes, or why he’s being so bizarre, or why he fell over, or why he’s vomiting. And I’m sure the answer to all those questions is, “He’s 3.” It would be great if our doctors could say to us, “We can’t say this with any medical certainty, but we do personally believe that Gavin will continue well.”
This would be amazing because belief is powerful. Belief in whatever it is that offers us help and aid in our darkest moments is what helps us to survive. I want to believe in Gavin’s wellness, but this afternoon it felt a little hard. Do I have any good reason to believe that there is another vicious tumour growing in Gavin’s brain? Do three vomiting bugs in two months indicate that or is that normal preschooler stuff? Does he seem lethargic, odd, unbalanced? Yes, at times, but don’t we all?
In reality, in the past month or so Gavin has made incredible leaps physically. He is at gymnastics, physio and Sportplay weekly and shows a huge improvement each week. He is racing around the neighbourhood on his balance bike, so fast that I have to run to keep up now. He has finally started to take the stairs one a time, and has almost mastered hopping on one foot. He’s terribly funny and creative and is becoming so independent.
So his appetite was a bit poor today. Is that a good reason for me to think that he’s suffered a relapse? Otherwise he was totally energetic and I had to rein him in to prevent him from over-exerting himself.
The only way that I will know for sure that nothing is up is to take him to MRI. I called them today to harass them. I called our contact nurse to get her to harass them. They will not be harassed. They insist that there is nothing they can do and they will get us in whenever they can. They tell me they are booking for October. Our appointment was supposed to be end of April.
This has turned into a long rant. My thanks for your patience. My thanks for your belief and your prayers. Please join me in WILLING the MRI department to get us an appointment.
I’m going to go and work on believing in my son’s complete wellness a little more.
And, how many bugs have your kids had this year? And tell me something your preschooler does that is completely weird.