Saturday, 8 June 2013

Broken Hearts Filled With L-O-V-E

Happy 19mths Mr.B!
Feeling pretty lethargic on the floor

It certainly wasn't a great day but it wasn't a bad day or a good day either.  Mr.B is stable and he is still maintaining his room air which is very reassuring.

The not-fun part (if there is a fun part?) is that he had to deal with being hungry today and that is not a sensation he is used to.  With the Ileus B has been NPO or off food for already more than 24 hrs and it was a rough day in that regard.  He was crabby all day (understandably) and wasn't easily soothed or placated.  The only solution to an Ileus is time, time off all food and time for the brain and the gut to start communicating again so that it starts to work again.

Trying to figure out how to use this IV hand
The Radiologist agrees that it looks like an Ileus but it isn't a cut and dry case (big surprise there).  B's xray is dramatically different then the last one he had of his intestines, that we know.  Has this been the root of the retching and it's just been building to this point?  Dunno.  If you remember (for those of you following us from the start) that B's intestines don't look like yours or mine.  He's had a Ladd's procedure done to where his intestines are pulled out and repositioned so that his colon is down his left side and the small bowel is on the right.  On top of this he has his fundoplication (stomach wrap) so to say his intestines are 'sensitive' is an understatement.  It's certainly not the first time we've dealt with an Ileus and it most likely won't be the last.  It's just how B's made (or re-made).

The decision of the day was whether or not to get a PICC line put in for B (longer lasting IV) as we are now in the weekend and staffing is always so much lower for the weekends.  After Dr.Levere (Pediatrician) chatted with Anesthesiology they said that in order to do a PICC they would want to use anesthetic.  That lead into the discussion that if they were going to use an anesthetic then maybe we should consider a more permanent port like a Broviac  or an infusaport.  This makes some sense since B is such a difficult poke but it has the pluses and negatives for sure.  IF this is an Ileus and is just a short term turn around (a week or so) then is the port really needed BUT if we are having ongoing GI issues then the port might be much easier option.  The major (and I mean major) issue I have with a central line is the fear of infection.  We've done Sepsis, I DO NOT WANT TO DO IT AGAIN, ever.  Anesthesia will be in to see B on Sunday and a decision will be made Monday as to our best course of action.

I think there was some shock when the Ileus was found, I don't think that it was really anticipated so what should have been a short admission for pulmonary issues (pneumonia) has turned into quite a larger issue.  We are certainly where we need to be, without a doubt.

Chillin with Momma watching Little Einsteins
The only real forward steps planned for the weekend would be to clamp his g-tube for a short interval (1/2 hr) to see if he can tolerate it.  I'm leaning towards no because his evening Nurse tonight said he had quite a retching episode while I was gone and that was with the g-tube open to straight drainage.

B's cough has gotten dramatically worse today as well, it just ramped up when we were visiting Dr.Brookes.  The hope (fingers crossed) is now that the steroids are kicking in that the junk in the lungs is moving and he is coughing trying to get it out....that's the hope.  He's still on his room air so I am hopeful in the sense that his lungs are certainly stronger now than ever before.

People keep asking how I am...How am I?  That's a  harder one to answer.  I realized this afternoon that I completely forgot about a performance that the big boys were doing at their school.  I felt so completely horrible about it as I know how much it means to them.   There would be nothing worse then putting on a performance to a  packed house without your Mom or Dad there.  People say (I don't know who these 'people' are) that GUILT is a useless emotion but it is real and true, that I know.  Do I think my children will remember?  No, probably not but it doesn't lessen my anxiety and stress about the fact that I often have to sacrifice one child's happiness for another's well being.  In a word it sucks.  It's a damned if you do damned if you don't kinda life.  If I'd gone (that is if I remembered) I could have left B and seen the performance but the entire time I was gone I would have been questioning if B was okay or not and if I made the right choice.  Plus then I would have to field a bunch of questions about B's well-being (not that I mind) which again plays into my anxiety that I should be with him.

I know that B being in hospital is hard on all of us and people tell me I need to ask for help but I really don't even know what I or we need most times.  The boys need extra love and attention and aside from that life goes on.  It was a rough night with Torin and Rylan tonight though. 

I came home for a few hours of much needed sleep and Mike took the boys to our friend Jodi's for dinner and play.  They were gone and I was alone in my  house (unthinkable, unimaginable to me).  I crashed out for a few hours of (much needed) uninterrupted sleep and woke up still alone.  It was a pretty fast turn over into a panic attack that was further exasperated by a phone call to B's Nurse to learn she was on break.  I cleaned the kitchen up (somewhat) and paced the floor.  Mike had my car, keys, purse and hospital parking pass.  I was trapped (or so I felt), it was not a nice feeling.  The rest and the kindness of it all was so wonderful and thoughtful of my husband to care for me but it left me anxious and jittery, not so rested after all.

When they got home just after 9pm Ry walked into my room and burst into tears.  I knew he was tired and he was upset over something that seemed inconsequential but to him (a overtired and emotional 6yr old), it was a big deal.  When I finally got him calmed down and asked a few more questions then the truth of how much he is missing Mommy and B were really the root of it all (no surprise).  He wasn't upset I'd missed the performance per se but it was a just a combo of all things that constantly change in our lives.  Mom and Dad missed the performance AND he was taken home by a friend AND had dinner somewhere's all a bit to take at 6 and 8.

Torin's tears didn't come till I went in to tuck him in and then they started flowing and flowing.  He informed me that his heart was breaking, it was shattering because of how much he misses B.  My poor sweet sensitive boys.  T went on to tell me (through the tears) that he was so upset that he and B weren't getting their love.  I asked what he meant and he simply meant that he and B need each other because they love each other so very much.  Not a big surprise to note that I cried right along side him.  It is hard to explain to them B's complexity.  They do get it to a certain sense but they expect answers that I just don't have.  T needs a day, time, minute when his brother will be 'well' and come home.  I can't give him that, I have no clue.  The only thing I can do for my boys is give them as much honesty as possible and let them feel their emotions openly.  It's been a big shock for them with this admission, we had B home for over 5 mths, that's a long time to get comfortable to having him around us!  They all share an intense love and bond with one another and he's right, it is shattering to have them apart in more than one sense.

It certainly doesn't make life any easier but it is so amazing to also be able to witness such pure and easy love.  These boys are the most amazingly wonderful creatures so full of love and compassion for each other and their parents.  At the end of another really long day, what more could I really ask for?

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

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