Thursday, September 29, 2011

Busy, gearing up for more busy

This week has been busy. 

Lets start with the fun stuff.
This caricature of Brayden was done during our Make-a-Wish trip. 
The artist knew it was for Brayden's wish trip and added a little extra.  I finally had the picture professionally framed and is now hanging in Brayden's room. 

Now the not so fun stuff.
Brayden screamed his way through the beginning of the week.  So much, that I picked him up from school one day.  It may have been because he had an eye infection.  We (the nurse and I) took him to the opthamologist to have it checked out.  His eye was really blood shot.  Brayden SCREAMED the entire time we were there.  It took two of us to hold him just for the doctor to look at his eye.  It was some sort of infection and was irritating his eye.  We now have a couple of eye drops to give him.  Then a follow up appointment with the opthamologist next week...oh, looking forward to that appointment...


Lots of medical supplies delivered this week.  And I have NO idea where to put everything.  First, Brayden received a portable suction machine.  His vomiting still continues.  We are now the proud owners of his original suction machine to pump his stomach and a new suction machine to suck the vomit/bile/saliva out of his mouth.  Not only do we have two suction machines, but now the multiple canisters and tubing (we get a couple of months supplies, so a set of 8 for each machine).

We started with a new supply company for some of Brayden's needs.  All of his feeding and respiratory come from one company.  And this new company is (hopefully) able to get some of the random supplies, like diapers, gloves, bile bags, etc.  Those supplies arrived this week.  Boxes are everywhere.

Brayden's closet needs a makeover to hold all of this gear.

Started off the week looking good.  Then today, four significant ones this morning.  Followed by at not-so-good seizure this afternoon.  Diastat was given and so far he seems out of it.

Brayden has been sleeping A LOT...whenever and wherever he can.  If he is not sleeping, he is trying to sleep.  I am not sure what to do about it.  I have been noticing the past several weeks that his night time sleeping is really deep, too deep.  His lips turn purplish...I put him on the pulse ox monitor and his O2 sats are low, dipping into 70s and 80s (it should be high 90s).  I jostle him around to wake him up to get a good breath and watch his O2 go back up into the 90s.  I have emailed a couple of doctors to hopefully figure things out...who knows what is going on...

September - we settled into the routine of school and activities
October - many doctor appointments, lots.


April said...

Oh I understand navigating the never ending boxes of supplies- I also know how tender it can be when things are happening and you don't know why--- those quiet worries that are tucked in the corner of your heart come right to the surface. xo!

Anonymous said...

Hope everything will be okay for the little guy... x

Shannon said...

You have been on my heart and mind tonight. I hope you are well. If you are over at Children's Fairfax and have time for a coffee, let me know. I would love to see you again.

Leighann said...

We had that suction machine. Never worked that well for us. I hope it works better for you guys. Maybe I didn't know how to use it properly. :)

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