Tuesday, 8 October 2013

Oh The Joys of Momma's Guilt

I just wanted to share with you that we were in hospital
B helping Ry play Skylanders!  B was laughing uproariously
because Rylan kept telling him to hit the 'shoot' button, not
the 'run' button!
yesterday for an appointment and I ran into one of B's first Respirologists that cared for him.  I let him know that B's been off his home oxygen since mid June (aside from the small surgery set back) and that we're being transferred out of Respiratory (for kids on oxygen supports) and into Pulmonary (for his chronic lung disease).  Dr.Anselmo was gobsmacked!  He told me that never in a million years would he have believed that.  This (B) was a kid that he (Dr.A) was fully ready to trach and have jaw surgery done to help his airway and now he's off oxygen before his 2nd birthday!  That made me feel good!  Our Superstar!

On the other hand:

Feeling a bit like the 'worst Mom in the world' (again) these past 24 hours...

We came into ACH last night after getting news in the afternoon that there was a bed for B.  Needless to say, Mr.B was NOT terribly thrilled about the idea when we got into his room.  I just wish there was some way to explain to him what is all going on.  He's had so much trauma happen to his little body that he instantly believes that 'this is gonna hurt'.  It sucks!

I made his crib bed up all nice and cozy and tried to get him to settle in for the night.  I knew he was exhausted, (as was I) but he just wanted to stay up the stinker.  I had an early morning (today) and since I'm already chronically sleep deprived when B's home (and when he's in hospital...okay, all the time), I knew that I needed to get some sleep so that I could stay awake through my 7 hour meeting today.  I tried to creep out and what do you know, my heart broke right in two has he started to cry.

An aside if you will:
Now, for those of you that haven't 'experienced' hospital life on an ongoing basis might be thinking how horrible it is that I would just leave him here.  It is never an easy decision, and I ALWAYS feel horribly guilty.  Please also keep in mind I have two other boys that need me and this isn't a 'one time thing'.  B's in here a great deal and I have struggled and written repeatedly about my need to find balance in my life.  I know that you might be thinking, "if my child were in hospital I would never leave their side"...which is probably true but the difference with chronic care kids is that when the stays can last for months on end at some point you need to try to live a 'life' as well as care for you child.  I am also very comfortable with his care here on Unit 2.  Most of the Nurses know him (or at least know about him) and he is always well loved and cared for.  Although it is horrifically difficult to leave him here at night most nights (after he's gone to sleep) it is actually healthier for all of us in the end (even though I can't sleep without hearing him at home either).  T and Ry need me as much as B and they get the 'hospital' stuff but it is increasingly difficult for them when Momma's grumpy, tired, stressed, fill in many other blanks here.

I had a friend say to me, "B's going into hospital for 2 weeks??" and my response was "yeah, 2 weeks isn't that great!".  While she felt badly for me that our stay was going to be a long 2 weeks I was happily rejoicing that it is ONLY a 2 week stay (celebrate the small things).

I digress...

The whole hospital room is a party and playground
So I left, B cried and I left, tears in my eyes and rolling down my cheeks by the time I made it to the car....it never gets easier and finding balance sucks.

The other part of the 'worst Momma...yadda yadda" is that I had a meeting all day today and then the hubby had a Dr. appointment so I didn't get up here till 8:30 tonight.  Did I mention the Momma-guilt doesn't ever lessen?  Justine (B's aide and entertainment) was here with B all day as were a slew of visitors (word goes out B's on the Unit and the Nurses come for some B love).  It's not as if he was alone, and it's certainly not as if he was in a bad mood...just the opposite in fact.  He had a great day and was all smiles and laughs before I got here tonight.

We did have a good play and snuggle tonight and once again he didn't want to go to sleep.  He's finally now gone down and I'm hoping (and telling myself) as I sneak out the door that he's going to have a good night.
Mr.B 'playing' the drum today with Justine...little drummer boy?

From Our Home (Unit 2) To Yours...

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