4. We can get out of bed!

We were transferred to Shriner’s Monday. It was a crazy, busy day. Once we arrived, I had some paperwork to do and Ben was examined regularly to ensure that he was doing well because he had just gotten off anesthesia. So far, so good. Ben has 5 screws (posts/pins) installed into his head holding his halo in place. He is doing well pain wise, but one screw is bothering him. It could be the placement, but it is more likely that it is bothering him because there’s A SCREW STICKING INTO HIS HEAD! The other four aren’t hurting, which is more suspicious to me. He told me the one bothers him when he raises his left eyebrow. I suggested maybe he stop raising his eyebrows…he was not impressed by my insight.

We are quickly establishing a routine here. Ben was stuck in his bed all of Monday and most of Tuesday. We received a wheelchair just after school yesterday. We went to school yesterday morning – we just wheeled the bed in there, so it was a good start. He will go to school every day from 9-11 and back again at 1-2:45. He is expected to attend school daily (M-F) and he should be dressed for it (yesterday morning was an exception as we got busy working with physio and OT in adjusting our bed and discussing our mobility needs). While Ben is at school, I can either do my own work or take a walk. Today I stayed at the hospital because I knew that there were a lot of consults out and I wanted to make sure I was around if anyone wanted to discuss anything.

Ben had a few struggles yesterday. The first was in taking his IV out. He didn’t want to take it out – he doesn’t like getting bandages taken off because he had a bad experience once. Ben’s nurse and I discussed it and we knew we had to take the IV out yesterday – Ben was not using his left hand because of the IV, but I particularly want to monitor that hand because it is the one that a) had pain all summer and fall and b) was very weak following his previous surgery. Anyway, we gave Ben the choice to have it taken out before dinner or after. Ben, of course, chose after dinner, but then he had tears in his eyes and seemed so sad. It was heartbreaking. We could tell that Benjamin would be worrying it over and over in his mind until it was done. Ben’s nurse and I exchanged a look. So then I did something that I probably shouldn’t have, but I decided to do anyways. I said “Ben, I’m gonna be the bad guy here and tell Margaret to take that IV out of your hand right now. She’s not working after supper, and I want her to be the one to do it. I’m sorry”. So, Margaret went to get the her supplies.  While Margaret was away, Ben sat there looking like his puppy had just died. I could see tears welling in his eyes and the strains of worry on his face. His nurse came back, and we took care of the task quickly – she soaked the site and I distracted Ben.  He was immensely relieved when it was done, but pointed out the two things that bothered him – taking off the bandage and applying pressure afterwards – we said we would work on different strategies for next time. Margaret left for a while and brought him back a big Hot Wheels set for being so brave. Later Ben told me – “mom – you know when I was so sad – I had to take a bunch of deep breaths to hold myself together”.  This kid continues to amaze me. 

We had one other incident last night that broke my heart. We generally try to go to bed at 8:00, but we had a new nurse on last night, so Ben didn’t get his meds until about 9:00. I turned off the lights in our room but could still hear him rustling about (I sleep about three feet away from him). Finally, he said “mom, can I get some Tylenol?” “Of course”, I said. I rang for the nurse and we gave him some Tylenol. I told him I was so proud of him for asking – this is a big step for us. After the Tylenol, I got him settled again. After about another hour, he asked to go to the bathroom. I undid his traction and brought him there. I could tell he was feeling a bit emotional on the way back. I tucked him in and asked what was the matter. It was difficult for him to talk and I could see tears welling up again. After a few minutes of watching him try to control his emotions, I heard him say “I just miss my bed – it’s more comfortable”. In my head I was thinking ‘I don’t think it’s your bed little one – it’s the fact that you are falling asleep with a steel helmet on and 5 screws sticking into your skull’. “I know” I said. “I miss my bed too”. I sat on his bed for a while and watched him try to get comfortable. After a while, he fell asleep. Today I made the decision to keep him on meds regularly through the day. I think the strain of the pulling on his spine just caught up to him at night. Today he seems to be feeling much better!

I said stop!!!

I suspect another thing that may be going on right now has to do with the fact that Ben actually has had some pretty pleasant halo experiences in the past. He didn’t mind it at all last time. BUT, he is remembering the end of the halo traction and not the discomfort from the beginning (he was quite medicated last time). He has fresh screw spots that are bruised, and he is feeling every pull of the traction – even though it is just four pounds at this point. I am sure he will feel better by the weekend.

Sorry if this is too graphic, but frankly – it’s not your head, so suck it up!
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11 thoughts on “4. We can get out of bed!

  1. I feel sorry for the pain and the uncomfortable state you are little Ben . I am thinking lovingly of you two and thank you Karen for sharing your reality . xox

  2. Thank you for sharing this journey with us, the kids and I love following along. Bennett said “Ben is so brave” and I couldn’t agree more. Sending so much love to you guys!

  3. You’re such a good mom, Karen! Poor little Ben. I cannot imagine!!! He’s such a trooper!!! ❤️❤️❤️

  4. My best to you both. I wish we lived closer to Montreal, I would love to drop in and see you both or even sit with Ben and play whatever game he’d like with him.
    Your are a very brave boy Ben and you and your Mom are lucky to have each other.
    Margot’ s Grand Maman.

    1. My goodness…I’ve been thinking of you guys a lot! It’s retro week here – I feel like I’m living in the past. I keep walking by Margot’s room expecting to see you guys. I miss you guys!!!

    2. Hi Louise! Just a note to let you guys know that we are starting a parents and patients of Shriners Montreal FB page. I am sure you guys would be a great source of information for new CP kiddos wondering what their hospital experience will be like.

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