Last Friday Night

Anyone who has known us well- or who has known us for more than 6 years (pre kids) can vouch for the fact that we know how to spend a Friday night. The sky is the limit on how we may take advantage of the gateway to the weekend.

Like the time I paid a dollar to ride the overnight mega bus from Minneapolis to Chicago so that I could go to an audition without paying for a hotel. (that was actually a mistake- it was a Disney audition, I thought I was auditioning for Cinderella, and it was actually for whinnie the pooh. I did not get the part. Just returned home late Saturday night rather dirty and very very tired-but with my wallet completely in tact, which was touch and go for a while there)

Or the time we rode a train to Assisi in Italy, and didn’t’ know where we were going to sleep that night, but the bartender who was serving us wine in the tiny stone cellar just inside the city walls said his mom was trying to get into the bed and breakfast industry, and maybe we could stay in her living room- we did and it was lovely.

 Or that time Andrew was mcing a big swing dance event and went crowd surfing jumping fearlessly into the arms of hundreds of dancers. AND IT WORKED. This type of thing was frequent during his dancing career.

Yup. Give us a Friday night and we will give you a story.

This is a picture from our Friday night last night.

 Looks like a rager, eh? Note the pants next to the ballpit. Crazy tousled bed sheets. Looks like we still know how to party. Ha.

 We needed to call off our night nurse last night, because she is recovering from covid. Open nights happen occasionally, (where somebody calls in sick, or we simply were unable to fill the overnight shift) and when it does  Andrew or I stay the night in Garrett’s room with him. (these days it is always Andrew, since I have a baby I need to nurse/tend to in the middle of the night). We have come a very long way in our approach to working a night shift. Garrett’s trach and ventilation require wakeful care and maintenance. Simply to make sure it doesn’t fall out (or his movement doesn’t pull it out) which is a semi-emergency requiring immediate intense action while Garrett turns blue and can’t breathe (this has happened twice in the last month). Also to suction his nose or mouth to make sure he doesn’t gag on his own spit which then causes him to throw up which often causes him to aspirate, resulting in a different emergency situation. Then there is the suctioning of his trach to ensure his trachea secretions don’t harden and form a plug, which also results in an emergency situation. We haven’t even talked about what happens if Garret gets mad and starts having one of his neurological induced arching spastic rage sessions.

 And then of course there are the simple jobs of operating Garrett’s feeding machine, or administering overnight meds (he gets water through his gtube overnight). There are plenty of tasks that require an awake and alert caregiver to be at his bedside while he sleeps.  The complexities of one of us filling this roll are significant. It’s not as simple as “well, parents pull all nighters sometimes, and you just catch up on sleep the next day.” There are often not windows for us to ‘’catch up on sleep’’ Garrett requires an attentive and alert caregiver during the day also. And we have a 5 month old. And a 6 year old. And a 4 year old. And, oh yeah- Andrew has a job… and if we don’t have a nurse staffed during the day (something that is also rather frequent, especially on the weekend) one of us is his caregiver, which leaves the other one to nurse the baby/rear the children/ work their job…. You get what I’m saying- not a whole lot of time to catch up on sleep.

So, with the generous help of my inlaws, we found a small loveseat that can pull out into a little bed so that Andrew can try to catch snippets of sleep here and there while he cares for Garrett overnight. Is this the safest option? Nope. Not at all. Does Andrew get good sleep? Haha. Garrett’s monitors are THE ONLY reason it feels like it is not too risky to try and sleep a little bit while he is also sleeping (and it really is a measured risk, and not at all ideal)- and those monitors make noise ALL THE TIME. Usually it is not to notify the caregiver of an actually emergency, but simply because Garrett is wiggling a little bit, and the machine cannot get a proper read. He has so many machines and so many different beeps and alarms, and we are so familiar with all the different pitch tones and what they all mean- 90 percent of time the alarms are not nerve wracking, but annoying. And loud. And oh so essential. And they are the reason why Andrew got about two hours total of sleep last night, never for more than 15 minutes at a time. And they are the reason that I am sitting alone on living room floor typing right now while Andrew takes advantage of the fact that Belle and Garrett are both napping. (He is trying to get some legitimate sleep in our bedroom).

 Have our Friday nights changed a bit? Yeah I guess so. Do they still hold limitless potential for thrilling heart pounding adventure where someone may or may not end up in the hospital? Yup.