this week is turning out to be a doozy folks and i believe we are officially in the trenches. one that is testing our mental and physical stamina around here. even more so than previous weeks if you can believe that. and yesterday i was just in a really bad head space and had to kind of pull myself out of it.
yesterday we had our weekly visit from the occupational therapist that keeps an eye on otto’s eating. his feedings have significantly declined in the past week or so. otto’s reflux is getting worse and worse and now he is starting to have food aversions. we are grateful for the NG tube because we can have him take the 10-15 ml’s at first then finish the 65 or so with the NG tube. this helps get him full and causes him less pain. although ideally we need him to be taking the entire bottle. we decided that it was time to have him see a G.I. to cehck out what’s going on. he is currently scheduled to go to helen devos for a swallow study but they couldn’t get him in for three weeks so we are going to see if we can get him in sooner at bronson. it’s not our first choice but the sooner we can see what is going on the better. our goal with these feedings is to help heal him clearly but also to now avoid the G tube which is implanted in his tummy. poor kiddo doesn’t need one more random thing on him. we are hoping that his surgery helps correct many of these issues but we are going to cover all of our bases. also surgery could be anywhere from 4-? weeks away and 4 weeks more of this is just not possible.
otto and i spent the rest of the day hanging around the house trying to remain calm and relax. when he gets worked up it ends up coming back up so we just took it easy and snuggled. when he would doze off i would try to tackle little projects around the house. yesterday i combed through my closet and got rid of things i no longer wear and organized things. and also threw away a ton of stuff. it felt good. the bedroom stayed clean until about 5pm when joe came home. lol what is it about men that are just clutter machines. joe can’t be the only one who leaves his clothes on the floor right where he took them off. anyway. it felt good to have a clean bedroom for just a few minutes.
i ended up getting out of the house solo for a few hours to go to the bob seger concert with my friend leah. it was an amazing concert but all i could think about were my boys at home. i’m not kidding i texted joe “did otto poop yet?” during hollywood nights. lol. that is when i knew i was in deep.
then this morning we woke up to give otto his feedings and i could hear joe wheezing. joe started talking and he was soooo congested. he was banished to the living room and is now in quarantine. which means i’m on single mom duty until he’s better. otto CAN NOT get sick. it could put us back at the hospital so we are not taking any chances and just digging our heels in and doing what we have to do. i’m hanging around the house today because we have our afternoon visit from the nurse for our vital check. i’m doing my best to keep myself occupied and busy to distract myself from thinking too much about our cardiac surgery consultation tomorrow.
speaking of that many of you have asked me specifically what to pray for.
we are praying that otto’s leaky valve is much better than they thought and are able to do a repair. even if they have to do more than one repair. my prayer is that we can avoid a replacement completely. it’s a longshot but we are not going to give up on asking for a miracle.