Waiting For the Shoe to Drop

I hate sitting here waiting for the other shoe to drop...I feel like we are sitting on the edge of our seats here.

I didn't quite realize how much stress can come across in a photo

B had a decent morning but again this afternoon he got very lethargic and (mostly) unresponsive for over 5 hours.  Everyone keeps reminding me that he's tired and I get that, he's exhausted naturally but I can't stop my 'spidey senses' that there is something more in the picture here.  He doesn't want to be held, he doesn't want his Momma and he was completely unresponsive to his big brothers when they came into his room.  Maybe I'm wrong, I'd certainly be happy to be wrong.


I finally asked for a CBC (blood work) to be done and a blood gas since he's so tired and having desats again.  Blood work isn't any worse nor is his blood gas, which is great but now his blood pressure is up tonight.


I just changed his bum (I've got cold hands), his Nurse did his full assessment and I gave him his 5 puffs of ventolin all with no real response from him (cried when I started the ventolin because it is on his face).


They did start a run of Pedialyte in his g-tube this afternoon (only 10mls an hour) but he was having none of it.  He was pulling at his g-tube and crying, it just hurts to have anything in his tummy.  We also went from straight drainage (g-tube open to drain) to having food put in with no time in between to clamp him.  Kinda missed that step of clamping off the tube to see if he can even handle his own secretions in his tummy (didn't even cross my mind).  So food (Pedialyte) is stopped for now and I've asked about TPN (IV nutrition).  I'm not keen on TPN, it's not great but he needs something.  My poor boy has been without food for three days and is rapidly losing weight (again).


He's still working very hard to breathe (indrawing and nasal flaring) so he's burning up calories there too.  It's not been decided if the ventolin is really making that much of a difference so we've pushed it back to every 2 hours (as opposed to hourly) so we'll see through the night if it makes a difference. I'm not expecting a dramatic improvement but I get very concerned when B has no personality aside from whining in discomfort or just sleeping through everything.


None of this helps as well when my own gas tank is empty.  I'm trying to get rest but when B's ill my brain doesn't shut down for very long to let me truly 'rest' (not to mention he's checked every 1/2hr when I'm at the hospital).  I'm trying to take care of myself through this, I'm trying to ask for help (thank you so much to Justine for working today, for Lorna for the goodies and feeding my children and Sumyu for the enchiladas in my oven).


Please keep our sweet boy in your thoughts.  He's such a strong kiddo but even the strongest need to rest at times too.  My greatest fear (in this moment at least) is that he'll continue to be pushed (working hard to breathe) on the 3 litres and finally just crash because his little body is so tired.  I'm trying to be positive, think positively but I'm know I'm certainly stressed and exhausted.


I hate when I get like this because poor Rylan gets the brunt of my Mommy grumpies.  He's just being a 7 yr old boy but his Momma has no patience for it (which is not good for Momma guilt when reflecting on another long day).  So please too keep our sweet Rylie in your thoughts he just trying to be a kid even though he's missing his brother.


Our guardian of a big brother Torin is struggling with not having his Mr.B at home.  Torin is fiercely protective over B and is our Mr.B whisperer.  There's been many tears over the past few days so I know that this too is taking a toll on him.  Please keep our protector T in your thoughts too, he needs some lifting up.


Another long sleepless night ahead but there is hope in my heart that tomorrow is another day, a better day.

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