Adjusting to Home

Brayden was discharged.  And I felt like it was more about discharging me.  Pages and pages of instructions for me, which I assured them we could handle at home so that Brayden could go home.

Part of the discharge plan was the changing of the ileostomy bag.  The entire contraption is changed twice a week.  Emptied several times a day.  The emptying part is interesting, at first we thought it did not smell much...then we realized that he was only on IV fluids.  Oh that smell changed after he started with the food.  A smell like poop but much more than that, like this where poop has come to die.  It is quite the smell.  Of course they give us anecdotal advice to minimize the smell.  The best/oddest advice?  Put some mint tic-tacs in the bag, it helps with the smell.  I will let you know if the tic-tac actually works.

Jeremy and I had full ostomy training.  And that was intense.  Not intense because of his ostomy, intense because of the wound care nurse that did the training.  She did not mess around and found no humor in our poop humor (I mean poop is shooting out of my child's side and that ileostomy farts, it actually makes a little fart noise, we have to find some humor in that).  I am glad she was intense because changing the contraption is a process.  My first go at it and it was about an hour...I may have done a part incorrectly and told to redo it. 

Finally I had it on.  Brayden handled it just fine.  As everyone kept reminding me, the intestines have no nerve-endings so it is not the problem for pain.  Protecting the skin around the stoma is where trouble can arise.

After two trainings, we given supplies for a couple of weeks until the monthly supplies start arriving.  And wow it is a list of things:  ostomy attachment, ostomy bags, tape remover, skin cleansers, gauze, more gauze, powder, paste, some smooshy stuff (don't know the name yet), glue, tape, etc.  And I learned from the training that all needs to be set up before you start changing.

I looked like to looted the supply closet when we left, bags and bags of supplies.  Our hospital swag bag, which I actually enjoy.  It is our life's version of a goodie bag.

Once home, Brayden settled in quite well.  Except the first night.  He was upset.  He did not seem to be in pain just wanted Jeremy or I with him at all times.  And not across the room, but right beside him.  After all of the exhaustion I finally crawled in bed with him till sometime after midnight. 

The next day, he just wanted to sleep and not be bothered.  He made it abundantly clear how he was feeling.

I am learning to adjust.  I had full intentions of calling a friend over and their child's nurse to help me with my first time changing the ostomy contraption at home.  Well, it did not work out that way.  After rolling Brayden over one evening, we noticed a bit of poop leakage.  The seal broke and we needed to change the entire thing.  A bit of panic and a shrill of shouting for Jeremy, might have happened.  I was not mentally prepared for it yet.  It honestly feels like an operation.  I frantically tried to get things all set up and working towards changing it.  I am not quite fast enough yet (time is not on your side because it leaks/shoots liquid poop), about 45 minutes this time.

Brayden has many follow up appointments.  I even have to take pictures and send them in for review.  One appointment we are looking forward to is the surgeon.  Brayden cannot have a bath or shower until the surgeons says a looks good.  A bed bath just doesn't do the job.  Poor guy, his hair is taken on a life of its own.