what a day

I'm thinking if I start and continue this blog now it's going to turn into one big rant or rave with a pity party to follow.

Let's get this straight - I am not divulging any of this to get sympathy.

I'm venting because I feel like I need to SCREAM at the top of my lungs about how unfair life can be.....and not necessarily for me, but for my children!

Zeta had a horrible night and today was not much different.  She just seems to be in so much pain.  It is so unlike her to be so agitated - especially for days on end.

She's had loads of diastat, versed, and tylenol over this past week, but nothing has  really seemed to help.

The medical staff has been working hard on trying to figure out what's wrong.  ENT scoped her this morning, but didn't find anything too impressive.  They could see some bloody secretions, but no active bleeding to give them any indication that all the blood that has been coming up out of her trach is from her upper airway.  (I do have to add as a positive side note that she has not had the large frank bleeds since we've been admitted).  Anyway, it's possible that it was something that resolved on it's on or it could be coming from the lungs.  Pulmonary stopped by  and told us that if the bleeding started again we could do another bronch and look at the lung tissue.  Hopefully, the blood is behind us. Zeta's labs aren't really showing anything remarkably different than what they usually do - just the usual anemia, dehydration, etc., but she has still been in an obviously large amount of pain.  They've ruled out uti and pancreas issues.  She had another renal ultrasound and it wasn't dramatically different from the last.  The PICU docs explained that sometimes kids with chronic health issues just have digestive systems that eventually 'give out'- basically decide to quit working for good.  We've dealt with feeding issues in the past and have discussed the possibility of changing her feeding tube from a G-tube to a GJ tube so today Zeta had the GJ placed.  Basically the feeding will go past her stomach and should be easier to tolerate......fingers crossed.  We just started a very slow drip of pedialyte and the morphine Zeta got earlier seems to finally be helping her be calmer than she's been in days. We still have no clear cut answers and we still don't know if the GJ will be the answer to our problems....Zeta was still trying to throw up on the way to radiology before they placed the GJ - and that was without any food in her belly since Wednesday morning....and there's still some flecks of blood in her residual. Please pray that it helps and that Zeta's pain and agitation will cease.

Well, that's the Zeta part of the day....now I need to tell you the Chancelor and Mommy part of the day.  At the very same time that Zeta was being taken down for the stomach studies and renal ultrasound Chancelor was on his way to the doctor with a big, black, bulging 'thing' on his leg.......MRSA.......AHHHHHH......My first thought was - "oh wow, I need to go clorox my whole house.....my second thought was -'nah this ain't real". It didn't really sink in about what was actually going on until my mom told me they had to cut out the infection and pack the wound.......Can you say LOST IT????????  I mean I had two children having two pretty important things done at the same time and I couldn't be there for Chancelor.  I felt like I deserved terrible mother of the year award:(  I couldn't quit crying about it......until I saw him.

What a brave boy I have......When I caught up with him at the store he was just as happy as could be....he just said he really didn't want to talk about it....Needless to say he was showered with lots of love (and a few toys)....

...then we took him to Krispy Kreme where he had the best time enjoying his doughnuts....

I am so thankful for my mom.....she held my baby through his pain and made everything ok when I couldn't be there!

I'm thankful for Zeta's nurse today....she encouraged me through my  melt-down and even made me laugh at her antics.....

I'm thankful for hospice and the support they give......

I'm thankful for all of my friends and family and God above - all the people that give me sanity and bring me back to reality......

I'm thankful for a special visitor today who is in the hospital with her own little one (after heart surgery) but still made time to come check on us.....as she said - there's no way to fully understand this life until it's actually yours............

I'm thankful that I can actually make it through my rants and see the other side.  I know how much even this moment means....and for that I'm thankful!