Cerebral Palsy, Health, Our Son, Parenthood

This Normal

Well the week didn’t go as we’d planned, but in this life, it never does.

After a completely healthy holiday break, Sebastian came down with a cough on Sunday. He was happy to go to school on Monday and Tuesday. Both days he was exhausted when I picked him up, which isn’t unusual. He had both the PT and the OT with him in class, one each day, which meant he had a little bit of in-class therapy. Although just being in class is like therapy for him since he has to work so hard to sit up and be involved. He was so happy to be back at school and I set him up in the sled on Tuesday before I headed off to coffee with two other moms, as a last minute invite. 🙂

Even though his cough wasn’t bad, when Sebastian comes down with a cough, I am always worried about pneumonia. I took him to the pediatrician on Tuesday afternoon, just to be sure. He was very lethargic but his chest was clear. The doctor said to come back tomorrow if he was worse, ie. any fever, diarrhea, vomiting, etc. By the end of the night he was falling asleep before his head hit the pillow.

The next morning he had some very loose poo. I took his temperature in the morning and throughout the day and it continued to climb to a high fever. He was in and out of sleep all day and had absolutely no appetite, gagging on any food I put in his mouth. That afternoon I called the doctor’s office and left a message. A nurse called me back at the end of the day to give advice. In combination with the fever and slight diarrhea, she was concerned about whether he was peeing enough. If not, he was likely dehydrated and would need to go to the hospital. Despite being fed water instead of food consistently throughout the day, and electrolytes in the afternoon,  he definitely wasn’t peeing enough. Ali brought home some Tylenol and we decided to assess in the morning, planning to head to the ER at Sick Kids once we were up. As we’ve visited the ER at night before, we knew that we all would get much more rest at home. And Seb certainly needed rest. And so did we.

Thursday morning Seb woke coughing with a rising temperature and we got ready to go to the ER. After the chest x-ray and blood drawn, pneumonia was fully ruled out, but an ear infection was spotted with his cough and runny nose. He was also really dehydrated so they hooked him up to an IV to get his fluids up as well as a boost of antibiotics. For the next eight hours we just hung out in the reclining chair, Seb going in and out of sleep, while his body was trying to perk up. Ali had to go to work after dropping us off and came back to relieve me during his lunch hour. He’s pretty awesome.

 Sick Kids ER

That’s the basic summary. Now let me fill in the blanks.

Sebastian had a flu shot before the holiday. I decided it would be a good move since he was in school now. Silly me, I didn’t expect the common cold to attack him so vigorously. But who was I kidding, after all he has an underlying condition. Which definitely means that the common cold is BAD. We did think about the weather before we moved here. We knew that Seb would likely get sick during the winter season. We just didn’t realize how badly since in Egypt, the warm dry weather keeps most colds away. Or at least they don’t attack quite so badly. Some may think me paranoid that every time Sebastian has a cough I’m worried about pneumonia. Well, apparently pneumonia isn’t always as bad as it gets. The one time he did have pneumonia he didn’t even end up in the hospital!

Now let’s review going to the ER. This was our second time going through the ER at Sick Kids, the first being for increased seizures. Upon arrival, they aren’t even interested in why you are there, first they want to know what his underlying conditions/precious diagnosis are. Dystonic Cerebral Palsy. Epilepsy/Seizure Disorder. GERD (reflux). The nurse looks up when she is done typing and says, “Is that all?” For me, that’s quite enough, thanks.

Either based on his underlying conditions or the fact that he was coughing and his nose was running, we got into an ER room right away and didn’t have to wait in the waiting room. Score. Even though it was just after 9.30am, the ER waiting room was filling fast. Everyone must wait until after a night’s sleep to come in. Ali had to head to work after we were taken to our ER room. Shortly after, the doctor came in and ordered the chest x-ray and the IV. The chest x-ray was fun, let me tell you. In the past I have just held Sebastian for this x-ray. But at a hospital that specializes in kids with underlying conditions, they are well equipped for kids that cannot sit on their own. So after stripping Sebastian down to his diaper, I had to put him into this device that resembled something you might imagine in a torture room from Roman times. There was a piece of plywood with a hole cut into the center where a small bicycle seat sat. I lifted Sebastian onto it, his legs dangling. Then I had to lift his arms above his head. Although he has ‘good range of motion’, it’s not something that he does easily so it was not easy to do. It was also possibly painful for him. Once I did this, the technician pulled together two clear, curved Plexiglas sheets around him with a hole in the center where they came together for his head to peek out. I stood there holding his arms above his head as he cried, looking at me like ‘How could you do this to me?’ It’s a great feeling, let me tell you.

After the ‘torture’ in the x-ray room, we were greeted by a nurse and a nursing student that looked about 16. She was going to help with the IV. Fabulous. I have two very good friends that are nurses. And I know that they would need such experience before they graduated, but it was still difficult to accept her help with my very fragile son. Thankfully she wasn’t the one who was searching for his veins. Once they decided to try for one in his hand, I immediately had flashbacks to his early days in hospital where he had IVs in each hand and foot, not to mention the direct line to hi belly button. It’s inevitable to have some sort of flash back with each hospital visit. Those feelings hit me for a moment and I have to push them back because I am here in the present and presently I have to be strong for Sebastian because if I cry, he will cry harder.

So I’m holding him on one side as they find a vein in his hand and his tears are like gumdrops and the vein bruises and then it’s another search for a new vein, this time in his arm. I’m trying to sing and I’m trying to wipe the tears from his face but they are coming too fast. I can’t sing anymore because I’m fighting back my own tears. Then I wonder if the nurses think I’m doing enough to calm him but what they don’t know is that I also have to do something to calm myself simultaneously. They find a good vein and once they draw the blood they set his arm in a splint with several rounds of extra sticky tape. I’m thinking about how much I am not looking forward to them taking that off in several hours time. Nor am I looking forward to the leftovers that I will later take off in the bath, setting in motion more tears.

Sigh. No matter what it is that causes your child pain, in any way, it’s heart breaking. But somehow the tape they use at the hospital is much more painful to get off than the stickiness of a Band-aid which just peels off so nicely after a soak in the tub. And the pokes of a needle, and the syringes of blood, somehow these seem a bit more difficult to bear than the scraps of a knee while playing outside. Whenever we visit Sick Kids I always feel so blessed that Sebastian is so healthy. But because of his underlying conditions, health is no guarantee.

Sleepy on the Couch

Thanks everyone for your thoughts, prayers and love sent to us from afar. We can feel it and it’s helping. Sebastian was much more aware today and even started to get his appetite back. He was sleepy all day, but unable to really nap more than five or ten minutes at a time. He fell asleep again without my help (he usually nurses to sleep). I just sat next to him on the bed as he drifted off into dreamland. That’s the fourth night in a row. His cough is a bit stronger and he’s trying to clear out his nose, but hopefully with a rest-filled weekend, he will be ready for school on Monday morning. He’s on antibiotics for his ear infection, so that’s going to aid in his recovery. I’m also hoping the sunshine and snow stays so he can have some fun playing outside. It was gray, rainy days which lead to this hibernation so I hope we don’t miss all the sunshine.

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3 thoughts on “This Normal”

  1. Kara, I have been thinking about you all weekend xoxo Oh I know all those feelings and how horrible it is with that underlying condition in the back of your mind. I hate temps and the risk of seizures it is really scary. I was also thinking back to when Cooper started Kinder and how he was pretty snotty for a while due to mixing with heaps of new germs. hope Seb gets better asap xoxo

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  2. What an exhausting experience! I hope he’s back to his gorgeous bubbly self very soon and you can steer clear of the hospital for a while. We were in the area of the hospital where S was born today and he asked if we could drive past it. Even just DRIVING PAST IT I felt myself get a cold sweat. So yep, I can totally understand the flashbacks with your much, much more real encounter with the hospital. Get well soon lovely Seb xo

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