She’s getting close to the 10 month mark!
Khloë was sick all week with a cold. Anytime she was upright in a sitting position she would cough and choke, so this week’s picture was taken laying down. My mom was here for the week and did the cooking and dishes, etc, while we took care of our sick daughter.
Every day Jordan and I spent a lot of time suctioning and coughing her. By “coughing”, I mean using the CoughAssist to simulate a strong cough (Khloë’s is weak and she can’t bring up mucous like a normal child or adult can). She absolutely hates being suctioned; she would clamp her mouth shut as soon as the machine was turned on! Unfortunately, it was something that had to be done because if we didn’t suction out the mucous, she would choke. In between these treatments I would do chest therapy by tapping percussor cups over the lobes of her lungs and then propping her bum higher than her head (postural drainage). This is meant to loosen mucous and drain it out of the lungs into the throat, to be suctioned out.
As you can see, an illness as simple as the common cold is a scary thing for a child with Spinal Muscular Atrophy.
To help her sleep, I gave her 1 ml of Advil. If she was still feeling awful after a few hours, I administered the same dosage of Tylenol. The great thing about her G-tube is that the medications can go right in the tube!
On the morning of Wednesday, September 24th, she gave us a scare. We noticed her breathing was different; she was working a lot harder to get air and kept coughing. Her colour looked fine. I spent 20 minutes suctioning before deciding we needed to take her to the local emergency room. I held her in my arms for the drive, suctioning the whole way, while Jordan drove. Upon arrival at the hospital, I explained my daughter has a neuromuscular disease that affects her breathing and that she needed to be seen ASAP. We were called right in to see the triage nurse. By the time we saw the doctor, Khloë was all smiles and breathing normally. The doctor explained that she most likely had a mucous plug that I was luckily able to dislodge on the drive over. To be on the safe side, he sent her for a chest x-ray. The Pigg-O-Stat is an evil contraption that scares the crap out of me. I hate seeing her in that thing for x-rays. At one point the technician asked me to put on the lead vest and support Khloë’s chest while he took a picture of the side profile. We were told that her lungs and trachea looked clear and were sent home.
Before we left the doctor told us these wise words: “Khloë has SMA, she will die before she’s two. You will just go through this over and over.” Seriously? We are her parents, I’m pretty sure we understand her diagnosis.
We made our exit and headed home. Mary from Infant & Child Development popped in to make sure Khloë was doing okay. She was supposed to stay and teach more infant massage, but Khloë needed a nap pretty badly. Then Dawn from CHEO called and asked us to come on Friday to see Dr K, one of the respirologists. And so off we went on Friday, all the way to Ottawa, after saying goodbye to my mom. I wasn’t comfortable with having Khloë in the car seat and she did have some coughing episodes. I sat in the backseat and suctioned her when she needed it.
The appointment was sort of pointless. Dr K asked us the same questions as the other doctor. Listened to her lungs. Explained how to count her respiratory rate. After he left, Carlie (respiratory tech) gave us our Masimo Rad8 pulse oximeter and showed us how to use it. Finally! She also demonstrated deep-suctioning through her nose, which Khloë absolutely hated!
What a lonnnnnnng week. And I was sick too.
But that’s not all. On the 29th Dr K called and said that the x-rays showed pneumonia. She called in a prescription for amoxicillin for Khloë and we started the antibiotics right away.