May 7, 2013

Home still

The week has been very very very long.  Since being discharged from the hospital, we’ve been super busy. 

Manny is still quite sick.  He has a double ear infection and both tonsils are quite enlarged and red.  He has tons of post nasal drip so I’m suctioning often.  He is trying to be happy but there are moments where he just can’t get it together emotionally. 

Nights?  Well, those are very long.  I’m so very thankful for the bipap I rented!  You see, prior to bipap, if he got this sick, he’d have to be hospitalized.  Then if he got sick enough there, they’d put him in the ICU and put him on bipap.  So basically he’s sleeping on the ICU machine.  It’s the only reason we’ve been able to stay home.  Now with that said, it makes me a bit nervous as we’re coloring out of the lines even further than normal on how to handle him and how sick is sick enough to warrant an admit to the hospital?  Let’s just say I’m sleeping a bit lighter than normal. 

Several of the nights all has been fine.  But last night (Monday night), he was having troubles maintaining oxygen saturation even while on bipap with oxygen.  I had to turn it up several times during the night as well.  And his heart rate was quite elevated.  Not sure exactly what all was going on but he was having troubles with his airway (between the massive amounts of saliva in the back of his throat and his tonsils so swollen). 

He’s struggling because he has these infections that require an antibiotic but we have no antibiotic we can give him at home.  I know at some point his body will be able to fight it OR we’ll end up back in the hospital with a fever and get antibiotics there. 

Well, his temps have been climbing.  One day it hit 100 then down.  Today it was 100.9 before it started its descent.  (101 is automatic admit).  So it’s close.  Let’s say … I’m packed. 

Meanwhile, remember how I was stuck in the hospital because we were waiting for the home bipap/vent?  And it was taking so long that I rented one so I could get home?  Well … we STILL don’t have one!  Isn’t that insane?  If I hadn’t thought out of the box and rented one, I’d STILL be admitted!  I’ve been home ELEVEN nights!  And who knows when the machine will show up!  Unreal. 

Also remember how I got to the point where I was desperate enough to need help and asked for night nursing?  And we were all approved?  We should have started with a nurse on the night we were discharged (I got the paper saying so).  Well … we still don’t have one.  Not one night.  And as of yesterday (Monday), I was told no one around here can staff a night nurse for us.  It’s not that I’ve asked for some ridiculous set of skills or they’re scared of Manny or anything like that … they haven’t even gotten far in the process yet!  They just don’t have a body to send us.  I’m asking what can be done about that.  Like can we get an aide?  Family member and they pay them?  Other?  This is insane too.


Now … because we have (in faith) decided we would need a night nurse, we have had to do some massive rearranging of things in our house.  We have a 5 bedroom house but all the rooms are full.  Dan, Manny and I share a room.  Kaley and Zoe share a room.  Sam and Luke in a room.  Jacob/guest room.  And Office for Dan (he owns a business and runs it from home).  So where does Manny go? 

The solution we arrived at was to put Manny in Jacob’s room.  And we’ve been doing that.  Massive amounts of stuff had to come out of that room to accomplish that.  Manny’s toys and medical supplies and furniture all had to go in.  We had to paint and decorate it. 

Then all the stuff from Jacob’s room has to go to his new room which will be the garage … but right now … it’s a garage full of stuff.  So the stuff is getting sorted … give away, throw away, storage, etc. 

So as of tonight, Manny’s room is basically completed.  And Jacob is currently room-less.  His books are on a shelf in the garage.  His desk on the back porch.  His clothes in the hall closet.  He is sleeping a few nights at my Mom’s house each week (already had been doing that for home schooling purposes) and then he’ll rotate on a cot in either the living room or the boy’s room until we can get the garage done.  We’re about 1/3 done emptying it. 

I’m exhausted just thinking about all of the work we have done and how much still left to be done!  But I just put one foot in front of the other and get it done. 

And right now … my front door entryway is a horror story! About 5 boxes of children’s books that are being given away.  (Manny can’t flip pages of books easily and Zoe is way beyond these books.)  And there are 4 bins of old toys.  Plus 4 bags of clothes the boys have out grown!  Yikes!

I’ll post some before/after pictures of the rooms when I get the rooms to a place where I am willing to claim them!  And Manny’s room?  We went with “Angry Birds” theme for now.  He LOVES it!

So that’s a bit of my crazy life. 

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