Hard Days

Some days are hard.  Damn hard.  And that's the honest truth.  Most days, lately, I have accepted our new "normal" and we carry on.  Then there's days like today that remind me that my life is anything but normal.

I suffered a horrendous migraine yesterday that really messed me up.  So I slept in this morning recovering.  Jayson was also super sleepy and slept allll morning long, likely because he's been having little seizures off and on again.  We had a feeding therapy appointment today so I scurried around and got ready quick.  It takes time to prep and bring Jayson's food for therapy, but I got things done and we were scheduled to leave on time.  I decided to leave Jayse in his PJs and just wake him up and load him into the car.  You can probably guess already that things didn't go according to plan...

I went to pick him up and he was soaking wet.  His feeding tube extension came out of his belly and his entire feed up to that point (200 mls) fed his bed.  As you can imagine, that is not fun.  And he had some stomach contents coming out too, so he stunk and was wet.  I had to get some towels to get him out of his bed.  I stopped his feed and threw his feeding backpack on my bed as I got him into the bath.  Even with a quick bath, it takes at least 15-20 minutes due to his G-tube undressing and dressing and taping.  I get him ready realizing we are now going to be about 15 minutes late for our appointment.  As you are likely guessing, that is not all...

I walked back into the bedroom to check out the damage and I notice Jayson's feeding bag did not have the lid on tight, so the remaining formula fed MY bed and soaked my white comforter, sheets, blanket and mattress.  His feeding backpack was also soaked, and it was our backup!  Our other was in the wash.  I remembered we had his old one in his closet so I fetched it out.  It takes a few minutes to switch out his machine and feeding bag to a new backpack, so I was even more late.  I also had to make him more formula since his whole meal ended up ON him and not IN him.  And I bet you're hoping that I'm done, but I'm not...

I get Jayse in the car and try to call our therapist's office to let them know we will be late.  Everyone was on lunch, so I left a message.  Next I called Mike and asked him to come home during his lunch to clean up the formula, tube feeding mess before it makes our whole house stink.  I buckled Jayse in his carset and hooked up his feed.  The machine started beeping and saying "No Flow Out".  I checked for kinks.  I checked his extension.  I rebuckled his car seat.  Nothing.  Still beeping.  At this point, I started crying.  My appointment was starting in 10 minutes and we were still in the garage.  I called my therapist directly and told her all of our drama.  She told me that I could come an hour later because she had a cancellation.  PHEW!  I brought Jayson back inside to try and figure out the tube drama.  His extension had a kink and bad clog in it.  That explained why it fed the bed.  I replaced his extension.  The feed ran for a minute or two, then began beeping again.  You have got to be kidding me!!!!  I open his feeding backpack to see that THIS feeding backpack was getting wet too!!  There was a leak in the feeding bag tubing!  Argh!!!!  So had to carefully pour the new milk from one feeding bag into another, prime it up, and finally things were in working order!!

One might think that maybe that was the end of my bad luck streak, but no... there's more.

We had a good feeding appointment.  All went really well there.

On the way home Jayse decided he was really tired from working so hard and fell asleep in the car.  Likely due to the very poor air quality today, Jayse starting desaturating in oxygen in the car.  His monitor was beeping like crazy while I was on the highway.  There was not any great, safe places to pull over so I picked a place and rushed to the back seat to stick on some oxygen.  Well shiz.  The tank was empty.  He hasn't needed O2 in the car for so long, I didn't even think of checking to make sure we had a good tank.  And Jayson's sats were in the low 80's going down.  I thought about waking him up, but I knew he'd fall right back to sleep again.  He was out cold.  I thought about calling home health, but it could take a while.  I thought about calling an ambulance or driving him a mile or so to the nearest hospital, but that is so dramatic and expensive for my simple mistake.  I realize that one of my besties lived nearby and one of her kiddos is on O2.  I tried calling her.  No answer.  I texted her.  She was in a movie, but told me to stop by and her inlaws were home and could let me in.  I stirred Jayse a little bit and repositioned him and it got his oxygen in the low 90's so I could try and make it to her house.

I had never driven to her house from where I was at so I got a little turned around.  Finally after about 10-15 minutes of driving (while having an anxiety attack) I got to her house.  I had to leave Jayse alone in the car desatting while I ran down to her basement to get a tank.  It seems I interrupted some family movie time, but her family is so sweet to help me out!  I got back out to the car, got the gauge on top of the new O2 tank, and realized that I needed the black O2 wrench to open the tank.  Shiz again.  I keep it in his feeding backpack... the one that got soaking wet this morning and that's currently at my house.  I got out my car toolkit but realized that in the SUV we just have a ratchet set.  I tried everything I could, and I could not get it open!!!  I started tearing apart the car, looking for something, anything, I could use to open the dang tank!!!  I said a prayer as I was searching and I found under the seat a black opener, that likely fell out of his feeding bag at some point!  I finally opened the tank and lo and behold, there was oxygen!!!  I got the cannula on the little man, which he hates, and he finally woke up... for good.  And his sats were back in the 90's.  Wow...  Guess he got a decent nap afterall, even though he was desatting the whole time and his momma was freaking out.

So that was my day.  I am currently home,  relaxing on the couch watching Christmas movies with a cold cloth on my head and some migraine pills in my system.   Today is a day I don't wish to repeat.  But the good news is that I survived.  I survived another day in the special needs world.  And we are home, not in the hospital.  I guess I'll be grateful for that.  But sometimes it feels good to acknowledge that my life is different and hard, and many people don't get it.  Jayson, Michael and I fight battles every day.  But look at how far we've come.  And I've had enough bad days like this to realize there will be a time I tell this story and laugh.  But not today.  Today I will drown my sorrows in chocolate ice cream, cuddle my baby and go to bed early.  Hoping I don't have another day like this for a very, very, very long time...