Thursday, 6 June 2013

One Step Forwards, Six Backwards B-Style

So I chose to be all smart and grown-up last night and not post but go to bed.  I was feeling good last night, and if I'd written a post it would have gone like this:
Hangin in Emerge with Ashley the Wonderful

Mr.B looked great tonight when I went back up to the hospital, he had colour in his cheeks that he's not had in a week.  We had one of our great Nurses Lily and got some wonderful visitors.  He was full of his silly self and I am thinking do we need to be here?  He had a good day, pretty low key and had an amazing 4 hour nap (unheard of!) in the middle of the day.  He went down for me without too much effort last night and I was still under crushing guilt driving home but it was slightly less then the night before.  It would seem as though the new antibiotic is fantastic and it is really kicking things into high gear...
The sweet note from Dr.B

What an awful day, B has been so very ill.  I called at 6 am to see how his night went and his overnight Nurse informed me that he'd waken up 4-5 times with Night Terrors and was inconsolable for 10-15 mins...SO NOT how one Momma wants to start her day.  As if I don't feel guilty enough?  Now, I know the Nurse was just letting me know and probably didn't realize that by saying he was inconsolable would bring me to my knees with guilt and tears but nonetheless it was said. 

I came in today feeling like I would do anything for him to make it up to him!  As it turned out Mr.B's rough night was just a prelude into the day ahead.  When I got in he had a retching episode shortly thereafter and his Nurse Sonia told me he'd already been a bit retchy this morning.  She said she was having to stop his feed, let him settle down, and then start it up again.  He was supposed to go back onto bolus feeds today as well as a possible trial for a change in formula (to take him off infant and put him on a peds one).  None of that happened because as the morning progressed so did B's retching episodes to the point that we had to turn off his food and leave his g-tube open to vent continuously.  At one point I opened the tube to vent him and food shot three feet straight up in the air...that's a hell of a lot of pressure in one's stomach!!

The decision was made to stop the feeds and start him on pedialyte for awhile to help his tummy get fluid without upsetting it.  We started the pedialtye at 21 mls an hour (that is mere drops of fluid at a time and he tolerated only about 8mls of feed (which is less than I flush his line with many times a day) before he had another major episode, this time dropping his Sats to 63 and needing an oxygen boost.  Off the pedialyte and another open venting break for his tummy. 

Even with his g-tube open to vent he is still retching and his last big retch took him down to 59 (he should be at 93-98 for oxygen).  Did I mention how I love watching my kiddo turn blue?? 

We finally got him settle enough that he's fallen asleep and the hope is to switch out antibiotics because apparently the one he had the last two days works well but has MAJOR stomach upset as a side effect....bloody hell! 

The last thought was that we'd try to put the new antibiotic in and clamp his g-tube for 1/2 an hour but he's since woken from his nap with another retching episode.  We just got back from a stomach/abdo xray to check for an Ileus (bowel isn't moving properly).  He's certainly got the Dr's scratching their heads with what to do next to settle him yet help him progress.

So far the urine is clear, the blood work is great and the basic test for the mucous came back clear...they do a more in depth look at the mucous but that takes 2-3 days.  Looks more and more like we are dealing with a viral infection which needs time over anything else.

It's certainly been a frustrating day from the standpoint of having to just hold him while his body tries to turn itself inside out.  He is back to his pale, pale self and feeling pretty darn exhausted as his sleep is continuously interrupted from the retching. 

Of course it also puts a monkey wrench in the rest of life as well since I'd promised the brothers they could come up today for a visit.  It's hard to explain why Momma didn't pick them up from school (again) and that no, I probably won't be home before bedtime (again).

Music soothes the soul
The positives of the day thus far:
We've got great Nurses that know us (Mr.B) and great Pediatrician overseeing all of his care and I had Ashley here to assist with B today so that I could talk to the Dr's and such one on one.

There is still a long way to go till the end of this day so I'm sure more 'good times' will come.

B's xray came back as abnormal, it looks as though an Ileus is present although it's not completely clear.  What is clear is that it is significantly different from the last one in Oct.  He's now off all fluid through his g-tube for the night.  We've had one kick at getting an IV in with no success so we are now waiting for the transport team to come up and place a line into him.  It also means that our stay is now extended without a doubt for at least a week by the sounds of it.  Am trying really hard to stay positive but am having bouts of tears today that's for sure.  Not to mention I've not felt ok about leaving his side and am hungry! (The least of my worries).

First off there isn't enough Vodka in the world to help me right now...

Before Transport came up I requested the NICU be called to see if they would be SO kind as to come go, too many friggin politics (not that they'd say that).

Transport came up and tried both feet, both hands and two in the head (new haircut to go with it) with NO success...not for lack of trying.  The next step was to call Anaesthesiology to put a pic line in (meant to last longer and put in under a little anaesthetic with a stitch to hold it in place).  I asked AGAIN requested the NICU but was told that Anaesthesiology had been called.

Thankfully the next two faces to grace our door were...NICU!  Yay!  Two more pokes (the first almost worked) and we're in.  New working IV in his arm...phew. 

The Ped came in to see that they had succeeded (there was a round of applause at the Nurses/Dr station when they heard there was success) and she said, (and I quote), "Nice call on the NICU Mom"....sigh, thanks I think.  She told me she called them because the Anaesthetic Team didn't get back to her and we were on a time line for him to get some fluids sooner rather than later.  The boy has teeny tiny veins and there hasn't ever really been an issue with a NICU team getting a line in...I did ask for a reason!
So so so DONE

From Our Home (Hospital Room) to Yours...

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