Tuesday ... so far ... standing by

Monday night into Tuesday was "weird".  It started off fine.  He'd had a nap at the usual time so at his regular bedtime (about 8), I rocked him.

Oh ... parenthetically, I got a rocker yesterday!  It was impossible to hold him on this slippery couch with no arm or neck support. 

Anyway .. He fell asleep immediately and easily.  He started to desat about 9pm and so I moved him to his bed where his oxygen will reach him.  About 2 minutes later, the Respiratory Therapist came in.  I told her he was just barely asleep.  But apparently she felt like playing.  She dropped something so she turned on the light to find it.  She talked very playfully with him.  She seemed like she was trying to wake him up.  As I stood there rubbing his head, whispering ... it's OK you can go back to sleep. 

But she won.  He was up.  Now it's 9:30 and he's WIDE AWAKE.  That's OK because they said that any minute we'd be going down for a chest xray.  So I put him in a little chair and put on a baby movie.  Eventually, I was getting tired so I laid down on the couch beside him.  Fell asleep.  By 11:30, they still hadn't come.  He was asleep in his chair.  So I moved him to his bed and I crawled in bed too.  Half asleep, half awake knowing they'd come any minute. 

Uh ... they never came. 

But the good news is he was fairly drama free last night.  I was a bit concerned about the oxygen ... but he only went down a few times, the alarm would sound, he would wake up and then the numbers would go up.  Makes for a pretty tiring night.  But eventually he stabalized and there were no alarms until around 7am.

The other great news is that his foot IV is still hanging in there.  We were worried because about 1 hour after it was in, it was looking very red and puffy.  We just decided to keep a look on it.  And it stabalized.  The IV nurse told me this was a very thready vein, and since it's on the foot (even though he has very limited movement in his leg) it's more likely to infiltrate.  Also, he was very overhydrated so that leans towards it too.  But this morning, it looks the same as last night. 

left foot has IV with gauze to protect his skin, right is the bands, pulse ox and gauze to protect his skin

8am the Pulmonologist came in.  We discussed the overall picture with him. They follow him monthly anyway and it made me feel very comfortable that they deal with the complex kids like him all the time.  They are the best pulmonary team around we're told.  He was happy with how he was maintaining.  Nothing really to discuss.  I had a few small questions for him ... things I was wondering about and he cleared them up for me.  There's a team of 2 docs ... one is very quick and matter of fact (the one that's been coming) and this one who is laid back and you can ask questions of so I'd been holding my questions until he was the one making rounds.  Manny is due for his monthly RSV shots (scheduled for Thursday) so they will just do it here.  One less appointment for me!

With his fever, his heart is spiking pretty good this morning. Alarms every few minutes (and they upped the tolerance for the alarm to sound!)  And his mucus must be extra thick this morning as he keeps desatting.  Then he'll cough pretty good and it goes right back up.  He might need oxygen support soon if this keeps up.  And he woke up retching this morning.  So we're not sure the trigger.  I personally wonder if he is swallowing some of the mucus and it irritates his tummy.  And the rest that he doesn't swallow goes to his lungs (he aspirates).  It can be absorbed by the body but it still can caus problems.  So thankful to be here where he has instant access to the right meds. It's preventing him from going down faster. 

On the agenda today?  To see if he is still stable enough (with all the new things in the night) to do the surgery AND to see if the tubing is in.  If yes to both, they will schedule the procedure for Wed or Thur.  NORMALLY, this is a no big deal outpatient procedure.  There are no new cuts on the outside of his body.  Just basically the button will look different.  And then of course the inside they go down the throat and reroute the tubing to bypass the stomach.  BUT ... due to his other current conditions on top of his already weakened body, they are being very careful.  (I like that.) 

Not liking our nurse today.  Most are great.  She is  ... uh ... not.  Orders say the nurse is to add the milk, start and stop the formula, flush, etc.  They are being very specific about when and how it is done.  She knows that.  She turned off the formula and then an hour later, she's supposed to turn it back on.  Well ... my brain is mush and I'm on "hospital time" where it's a time warp.  40 minutes late she came to check and then fussed at me for not starting it or not alerting her it was late.  Uh ... hon, that's not my job. 

She has a nurse student following her around.  I think she's just trying to look tough.  A funny thing is she told the student nurse "Any time you walk into a room, you MUST fill the fluids and reset to 2 hours. No matter what."  I noticed that this time when she was fussing at me about the milk, she forgot to reset the fluids.  (And it had like 20 minutes left on it.) Normally, I would say something to one of the other nurses but not her.  Sure enough, the bell sounded. 

20 minutes and several pages later (not from me but from people in my room such as housekeeping and the tech) a different nurse had to cover for her (my favorite nurse from yesterday actually). Oh, and on the way out this nice nurse said, "Did you eat yet?"  to which I responded, "You DO know me well.  Thanks for the reminder." 

1pm the tech helped me give Manny a bath ... and he needed it! He smells so much better now. And since he has been fever free for 4 hours now, he got ... ... PANTS.  Sure they're purple.  But he is happy to have pjs on again. 

2pm, the nurse from interventional radiology said they have an opening, they have the tubing so they could do his procedure today at 5pm!  She only wanted to do it though if no anesthesia.  She said it's not painful, just feels weird.  And they often do it that way.  (Seems scary to me but what do I know?)

I started praying.  Lord, I don't know if they should do it today or not.  I don't know if he needs sedation or not.  Speak to them. 

5 minutes later, the GI doc came in and said the plan was to go today.  Great.  And no sedation.  THEN .. she rethought about it and said since he is changing sizes (from a 14 to 16) that it WOULD hurt and that he needed to be sedated or it could over stress his heart. 

3pm I'm sitting here waiting for the final decision.