Hi. I’ve been a bit absent. I must say that blogging when I was pregnant was way easier than blogging as a mom! Especially with the weather getting nicer. But that’s not all that’s been keeping me away.
Many of you know this who follow or interact with me on various social media platforms, but many of you don’t. Three days before Hank turned 8 months, I noticed his suck was a bit weak. He wasn’t taking much milk from me and I was having to pump like crazy while he napped. A day and a half later he seemed to be falling asleep everywhere. The next morning his diapers weren’t very wet so I called the doctor and went in to see her. She told me to take him into the Children’s Hospital here in town so I did. I thought he was teething, because he was. During the 6 hours in the emergency room (only 15 minutes of that in the waiting room), his condition continued to get worse (as it got later into the evening and night). He was weak, he was so tired, he couldn’t hold his head, he was still weak when nursing and he couldn’t suck a bottle of Pedialyte so he was on an IV for fluids. You can see below how droopy and weak he looked.
They ran test after test after test, x-ray, lumbar poke etc. Finally we were admitted and he was placed on antibiotics for bacterial meningitis “just in case.” Over the next two days he had more tests and an MRI and continued to get worse. It was suspected he had Infant Botulism and an antitoxin was ordered from California. Because it was Good Friday/Easter/Easter Monday, it took 5 days to arrive and he was on a breathing tube in the ICU by then. His EMGs (2) were not consistent with Botulism results and he was then treated for potential Guillain Barre Syndrome. Over the next 9 days his gag reflex came back and he was taken off the breathing tube a few days later. We then received lab confirmation (they needed a stool sample and he didn’t provide a suitable one for them for almost two weeks) that he did, indeed, have Infant Botulism. Thank goodness he had already been treated 9 days earlier. He spent two weeks in the ICU and two more weeks in intermediate care before being discharged. My husband and I alternated nights staying with him and we were there with him all day, every day. I pumped breastmilk for him every three hours (waking once in the night to do it) for five weeks and I still couldn’t keep a suitable supply for him.
The infection essentially weakens the link between nerve and muscle, which presents itself externally as weakened muscles. Bowels, eyelids, neck and suck/swallow muscles are the first symptoms that are noticed by parents. Without hospitalization, failure of the respiratory system can be fatal. When we were transferred from the ICU, we immediately put Harrison in our Beco Gemini and kept him there for as much of the day as we could. He was hard to hold as he was super floppy but the carrier helped us to hold him.
It was stressful beyond belief and we are just now emerging from a fog. Every question they asked us about where he could have possibly gotten it we answered no to. Near a construction site? No. Pets? No. Someone else watching him? No. Possibly eating soil? No. Unpasteurized honey? No. Any raw root vegetables given to him without cooking? No. So we will never know where it comes from, just like 95% of families who are affected by Infant Botulism. There are about 3 cases each year all across Canada. The diagnosing doctor had never seen a case with his own eyes before as it had been 9 years since the hospital had their last case. It is rare, but not unheard of.
We came home on May 5. He used a feeding tube at home for another week and kept it in for another week after that just in case before it came out. It was 5 weeks in the hospital and 7 weeks from start to finish. Here is how Harrison looked on the day he went home.A dietician, occupational therapist, and nurse come to our home to check on him. The nurse will soon discharge him but dietician and occupational therapist will continue to follow him for about 8 weeks to make sure he is gaining back weight at a good rate. Harrison is gaining his strength back steadily and is now back to sitting unassisted (at 9.5 months).
Many of you who have followed mine and my family’s journey reached out to me through Facebook and Instagram to offer kind words and prayers. Some local folks even stopped by the hospital with cards or gifts for Harrison. People recorded themselves reading books and emailed us the recordings to play to him while he was sedated. Friends visited to bring us a laugh, to bring us a meal, or to cry with us. “His” favourite hockey team sent him a care package. I didn’t even have a clue how many people cared for us and for Hank until this past month. Thank you to everyone who was a part of this experience with us in one way or another.
I’ll see you next month with a much happier update.