This morning I have so much to be grateful for, not the least of which is Hezekiah. Yesterday began with Ki uncomfortable and out of sorts. Understandable following surgery. What came as a complete surprise were the many respiratory "events". When the first of these events occurred we wondered if perhaps they were related to pain. He was started on some hefty pain meds, but that didn't seem to help at all. The episodes continued, and got worse over time. I'm struggling to share all of this because yesterday was so emotionally taxing. After working so hard for nearly two hours to keep him stable, we almost lost him. My baby almost died. The doctor looked at me across Ki's bed (through all the chaos happening in the room) and said, "You need to call dad." I don't think I have ever been so scared of losing him. I hold it together really well in the high-stress medical situations. I am calm, I do what needs to be done, and then maybe later I lose it a little. This is the first time, since those early days when I had all the added post-pregnancy hormones flowing, that I couldn't hold it together any more and I broke down and cried in the midst of it all. Looking at your child and wondering if they'll take another breath, watching as the life leaves their body... this is something NO ONE should have to experience. Ever. Tim did make the trip down, though, thankfully, I was able to call and tell him Ki was stabilized and he could take a bit more time coming. He brought me more clothes and items to make my now extended stay here a bit more comfortable. With the curfew in place here in Mpls due to the rioting he left for home shortly after 7pm, but I was grateful for the bit of time we had together. This morning as I look at my boy, resting comfortably (though still quite medicated), I am beyond grateful for his life. I am grateful for the many staff who helped preserve his life; for these people who are a sort of "extended family" and continued to check in throughout the afternoon to make sure that not only was Ki okay, but that I was okay as well. I'm grateful for "extended family" at home that checked in on my other kids to make sure they were okay (especially emotionally). I'm grateful for everyone who prayed even without knowing the details. All that being said, we will be here at least through the weekend. Ki is currently on a hospital vent, as well as the previously mentioned pain/sedation meds. Just a few more steps to climb before we can head home.
Overnight Ki spiked a pretty high temp (around 104*) so we are now monitoring that as well. All of his blood work has come back fine so far. We will wait for a trach culture as well as other respiratory panels to come back, but I think it's likely a combination of a lot of little things (his tendency to get very warm very quickly, the fact that his head was wrapped in several layers of gauze, some pain/discomfort, etc) that played into it. Neurosurgery is not concerned about it being related to the replacement of the shunt, but we will certainly keep an eye on those surgical sites as well. Ki's new shunt is programmable, meaning they can adjust how slow/fast it drains the ventricles. Imaging from yesterday evening shows the ventricles in his brain are substantially reduced from their pre-surgical state, but he has a bit of additional "pooling" in other areas on top of the brain. Those findings led them to increase his setting from a 2 to a 3. This will require more pressure in the ventricles before the valve opens and allows them to drain. From a shunt/surgical standpoint things could not have gone better yesterday. We would appreciate prayers that all would go smoothly from here on out. Pray too for our other kids as they have to process all of this as well, but without the physical comfort/evidence (seeing Ki in person) to reassure them that he is okay.
1 Comment
Jeanne
5/31/2020 04:54:27 pm
Just saw your post. Sorry for your struggles. Praying for peace and God’s will to comfort you.
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AuthorHi. My name is Kristin. I am wife, mom, friend, Christ-lover. Thanks for stopping by and sharing in our story! ArchivesCategories
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