Day 16: October 2

October 3, 2010

What a roller-coaster!  After I wrote about what a great day Sam was having, things took a funky turn.  First came the call from Laura that for the first time in 15 days Sam was going to change rooms.  Apparently this is totally common in the NICU, but for some reason this got me unsettled.  It felt like we were loosing the good mojo of room 11 by moving Sam to a new room.  Then, when I checked in on how Sam was doing at around 9:30 pm, his nurse told me he had quite a few apnea events over the last few hours.  Well, that was enough to break me down.  After a good cry, Peter called our next door neighbor to drive me to the hospital as it was clear I was not going to get any sleep until I saw Sam.

The new room was nice and big, and had a great view... however, I was startled to see one of Sam's primary nurses not assigned to him.  The new room he was put in was in a different nursing area- meaning all the nurses we had built up the trust in would not be on his team.  This didn't really hit me until today- and had me pretty upset and confused.  You see, they tell you to find nurses you like and trust and designate them as primaries.  This means, if they are on duty and do not have any conflicts with another patient, they will be assigned to Sam.  We have built up a pretty good list of primary nurses, and have seen the value in the continuity of care.  Having him in a different part of the NICU with all new nurses was just unacceptable to me.  But I am jumping ahead....

So, here I was arriving at the hospital at 9:30 pm last night, an emotional basket case, expecting to find Sam in distress.  Instead, we arrived to see that he had stabilized pretty much right after I called.  At least I got to see him and see that he was OK.

So, we started out Saturday morning with a dose of normalcy.  Once again we slept through Irene's jumpy class.  I made breakfast (the first one in a long time) and then we were off to Irene's soccer practice.  We then had a nice visit at home from Christian, Robert and little Bertitio.  They brought us more groceries than we knew what to do with!  From there, I went to the hospital to see the little man.

I got there around 3 pm and met his two new nurses.  Right away, my guard was up.  They started in on telling me that he probably had all the apnea events because I tired him out the previous day by holding him for less than an hour.  Not a good first impression- blame the mom!  Anyway, when I tried to point of that I often held him from longer than that they totally ignored me and kept saying "well, we don't know him, so we re not sure".  That was it for me.  I complained to the charge nurse and to her credit she jumped in right away and figured out a way to move Sam back to the part of the NICU we had been in for the last 15 days.  So stupid that they would move him away from all the nurses that know him, but at least they are correcting it tonight.

As for Mr. Sam... he looked really good today and was having a pretty good day.  He had his last dose of Indicin in the morning.  They will redo the echo cardiogram on Monday so we can see if it had any impact on his PDA.  So far, it seems like the heart murmur might be a little better... which is an indication that the PDA might be a little smaller.  The number of brady's have stabilized- with Sam only having 4 in the past 15 hours.  I also got to see for the first time... both of Sam's eyes open!

For the first time, mom got to see both eyes open! His right eye had been swollen shut for a few days, so this was really big for mom.

The other thing that was nice was when I got to the hospital Sam was on the prong not the mask, meaning I could actually see more of his face.  It really is the little things!

More face for all to see

I am looking forward to seeing Sam back in the familiar part of the NICU tomorrow and talking to our social worked on Monday about the move.

And now for your moment of zen:

It must be unbelievable frustrating that they (the hospital) seems to make decisions on paper and process (like nurse changes and moves) without asking (themselves) questions or assessing from a human perspective PRIOR to finalizing a decision. I seriously think I would flip out (my temperature is rising just reading) and I am left shaking my head. I am amazed at how the hospital operates considering the basis for what they do and so glad you stand up for what you need and what is best for Sam. Your strength is admirable.
Melissa, that move doesn’t seem to make any sense. Why would they move Sam away from the nurses who know him? But you did say that it’s common to move children in the NICU — so I’m curious to know the hospital’s reasoning. Will you let us know what the social worker says?
As soon as I talk to Misty… I will update the everyone. The move made no sense to me either! At least when I went to see him today his regular nurses were back with him.

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