Feeding Camp Days 3 & 4

DAY THREE

ready for bed in a new room

Today was moving day!  The family moving out of the room we were moving into came later than anticipated so Wyatt got a shower in the old room and got into his pajamas.  Yes, we let him wear his socks with sandals.... Want to keep his feet and bed clean!  

We finally moved into our room close to 8 which means Wyatt didn't fall asleep until a little after 9.  James and I tried to get as organized as we could while letting little guy sleep.  

Yesterday as a whole was a good day.  He had his first real OT session and he wasn't feeling it.  Not sure if there's just too much going on in the room or if he's trying to adjust.  We'll see on Monday if that continues.  

Wyatt was also weighed yesterday.  He's lost a little weight but nothing concerning and nothing we didn't expect.  We are going to give him a little bit more through the tube at night to counter not getting as much during the day.  This is a bit of a step backwards but looking at the end goal, it is what we need to do.  

He slept pretty much through the night.  I stayed up late to give him his bolus feeds so I was tired this morning.  Of course.  

DAY FOUR

I'm going to be really honest, today has been a hard day.  Wyatt didn't wake up until 7:30, which was nice and the day started good.  

He didn't eat a ton at breakfast and he threw up some.  I think it was blended waffles.  {Yum, right?!?}  His first bite of them, he grimaced some.  I don't think it's the flavor he made a face at but the texture.  I've given him tiny bites of waffle and pancakes at home both with maple syrup.  He LOVES syrup.  If I'd let him eat that off the spoon, he probably would.  

Wyatt playing the piano in the chapel.

We went on to play outside for a little while with some of the other kiddos.  Wyatt took a little tumble and he needed his button pad changed.  So we came in to clean up and change his button pad.

On my way in, a nurse asked if she could speak to me about something, in a very serious, "I have to have this conversation with you but don't want to" tone.  I honestly had no idea what she had to say but did not expect what she said at all.  

And before I share, I will say that for some reason, I took it very hard.  I was very upset and it took me most of the day to calm down.  Reflecting back, I didn't really need to be as upset as I was but for some reason, I don't know.  Maybe the surprise?  Being told what to do?  It being ridiculous?  I don't know?  So anyway...

He hasn't figured out that he can BANG on it and make lots of noise so it's nice to hear him just punch away gently, making music.  :-) 

We brought Wyatt's closed circuit video monitor with us so that if we needed to leave the room while he's sleeping or just leave the room while he is trying to go to sleep, we could and still have eyes on him.  James and I always have eyes on him.  But apparently somebody complained to the charge nurse that they felt like "they were being watched" and were "uncomfortable".  James' first response when I told him was that if they are doing their job, why would they feel uncomfortable?  I pointed out that it was not an IP camera.  I can't record anything.  I can't save anything.  I can't go back and watch anything.  If I don't have the monitor in my hands and turned on, I can't see anything.  I only use it when Wyatt is IN BED.  And to be honest, no one should be doing anything in my room without us in here.  They do pop in to leave food, towels and such but no one is touching or watching Wyatt without me right there and I promise you, I don't need a monitor to see you- my eyes work just fine.  Anyway, she said she'd speak to management on Monday and in the meantime we needed to unplug it.  So, I unplugged it.  Doesn't matter when he's not in bed anyway.  

I just think it's crazy that you can have a sound monitor and not a video monitor.  It's the same thing when it's not an IP camera.  It's for the safety of our son.  The day nurse thought it was ridiculous and told me I could use it and that she'd be here for the next 4 days.  Anyway, I'll let you know how it goes.  

James got here with lunch and Wyatt had a rough lunch as well.  I had to go home for a few hours to make Wyatt's blend for his tube bolus feeds.  We were getting low.  I hated leaving but it was good because I was really upset.  The less busy day and the dumb camera incident just had me in my head to much, not in a good way.  

Wyatt threw up a lot while he was napping and didn't really go back to sleep.  I don't know what was going on with his sensitive gag today.  He refluxed on an empty stomach before lunch too.  He had just had a drink of water, not sure if went down the wrong pipe or what.  Hate when he gets the red faced thing going.  I always feel so sad and helpless.  

Our feeding tech had some time today and offered to let us bring Wyatt at 4 instead of 3 in hopes that he'd get some more rest.  I was gone during this session and James said he did really good.  

Of course, I some how gave him a big hug just at the wrong time before dinner and he got really clingy and upset before going into his feeding room.  And he didn't eat much and cried.  

Prayers I have a calm heart tomorrow and Wyatt has a better eating and drinking day, with no vomit!  :-)  

Of course I forgot to take pictures of our new room.  I'll post some tomorrow.  We got all unpacked and it feels a little more comfy and home......ish.  :-)     

Wyatt reading one of his favorite books.