Note: I am wayyyy behind but a lot has happened in the past month that has not allowed me to update regularly!
My baby gets a little older every week:
Khloë came with Jordan and I to our young adults group at church on Wednesday evening. I was hesitant to go because I wasn’t sure how cranky she would get near bedtime. I can’t leave her in the nursery with the other kids anymore–can’t risk another kid touching her toys and then her putting them in her mouth–so she stayed with Mommy and Daddy during the group. She was happy and chatty and made everyone smile!
Thursday morning we went to Pembroke Hospital to pick up Khloë’s AFOs. They are molded hard plastic braces (with cute butterflies!) that she will wear for 1-2 hours a day for two weeks, as a breaking in period, and then we are to slowly increase that time. The braces are meant to correct the slight curve to her feet.
I ordered two bottles of sambucus (black elderberry extract) from Swanson Vitamins and started giving Khloë 5 ml once a day to boost her immune system. Many SMA kids are given this extract and I decided we should try it out.
At 3 am Saturday morning I woke to the sound of Khloë crying. I checked on her and felt wetness on her shirt. Turning on the mini flashlight we keep by her crib, I saw she was covered in vomit. I called to Jordan that she’d been sick, and as he came into Khloë’s room she started to vomit again (through her nose and mouth). I quickly turned her on her side so she wouldn’t choke and Jordan quickly suctioned out her mouth. Her breathing looked normal, but there was a lot of thick mucous in her vomit. I stripped off her pyjamas and moved her to the change table while Jordan pulled the sheet and mattress cover off the crib and tossed it in the laundry basket. Then I attached the pulse oximeter probe to one of her toes to check her o2 levels. They hovered around 94-96, with heart rate high 140-150s. She ended up puking a few more times. We were concerned enough that we decided to bring her to the ER in town. Once we got there, though, she seemed better. The doctor ordered an x-ray which showed pneumonia was clearing up but wasn’t gone. He was unsure as to what was causing her to vomit because she had no fever or other symptoms. He suggested we stop giving her sambucus for a couple days to see if that was the culprit, and then re-introduce it in smaller amounts. By the time we got home, it was after 7:30 am. We all went back to sleep for two hours. When Khloë woke again, I let her nurse and then did some chest PT. She threw up one more time a little while after that. I kept a close eye on her for the rest of the day, and after a great nap in the afternoon, she seemed back to normal again.
And then Sunday morning she vomited at the end of her feed! This time it was very yellow and looked like bile. I vaguely remembered reading something about bile in the enteral feeding booklet we were given at CHEO but I couldn’t find the information I was looking for. For the rest of the day she was fine. A couple times, when I vented her G-tube, it looked like bile in the syringe. We ended up going to our friends for turkey dinner and once again Khloë was perfectly fine through her feeds and was in good spirits. We got home around 8:30 pm and I realized I hadn’t yet changed her G-tube dressing. When I unwrapped it, I saw that the tube measured at 6 cm (instead of 10 cm). I slowly pulled it out to 8.5 cm but there was quite a bit of resistance so I left it. I started to think that maybe the vomiting and bile had something to do with tube migration. Jordan called General Surgery at CHEO and spoke with a doctor and the doctor told us to bring Khloë to the Pembroke Hospital to have it checked out. That’s a 30 minute drive and neither of us wanted to bring her back to the ER. We figured we would try once more to pull the tube out to 10 cm, and luckily this time it worked! No more vomiting and no more bile!
Daddy also taught Khloë to “play” her toy xylophone. She loves tapping at the keys!
We received the brand-new suction machine this week, along with a few enteral feeding and suction supplies I had ordered. Our nurse coordinator from CHEO called to check on Khloë and remind us about next Wednesday’s appointment. And we decided to cancel our upcoming weekend trip to Kingston because my mom was still sick.