Tuesday, June 11, 2013

I'm tired!


I think the only thing I'm not tired of is not having to make dinner! :) Thank you Ronald McDonald house! On the few days we didn't have a home for dinner meal provided, I had a freezer meal that was given to me from friends at church!

Really, it's just been the same old, same old... lots of visits from lots of doctors, pokes, meds, blood work, x-rays, echos, ecg's... walk to the healing garden 30 times a day... go see the fish 5 times a day go to the beach 2 or 3 times a day... repeat, repeat, repeat...


Sunday was my limit.. I was just worn out.  And my emotions were quickly rising to the surface... they still are to be honest.  I'm feeling a bit better today and will continue to try and relax and refocus etc... I've started reading a book maybe that will help take my mind off things.  As time goes on here it becomes  harder to watch Lily have to go through everything.  And with a toddler every little thing is a big deal.  Even if you're just going to change a bandage.  To her after being through this she doesn't want anyone coming anywhere near her if you look like you might be doing something to her! So it's difficult to continue to have to get echo's and ecg's done and I'm usually the one trying to help her through it.  Any parent knows how hard it is to see their little one sad for any reason.  I just can't even imagine if I feel like this how she must be feeling actually going through it all without really understanding why she has to.. :(   I'm trying to just remind myself that there are a lot of other people in way worse situations than ours.  That helps me snap out of my moods at least for a little while..




I usually only post happy pics of Lily because then it seems like she's doing well, but the reality is there are lots of sad times too :( 

Yesterday she went down for a chest x-ray which is usually done in "the tube" while we were waiting to go in she was crying and I was trying to talk to her and just explain things again and ask how she's feeling etc... and she said she was scared.. and it just made me cry.  I just cried and cried and tried to compose myself by the time the x-ray tech came out to get us which I just barely did.  Luckily we were able to get her chest x-ray done sitting on a stool!! I was soo glad she was calm "enough" to get it done that way instead of the tube.  made it a lot quicker and less traumatic.  She continues to amaze me.  She had an echo done which she hates more than anything.. I don't really know what it is about it that scares her so much and gets her so upset because they don't hurt you just have to hold still.   She did soo much better than the last one! and they were able to finish it in about 10 minutes! record time for her!

The drainage has been minimal to nothing over the last few days and today they pulled them out.  The doctor didn't like the looks of the right one and he said to be honest they might end up needing to go back in, but I want this one out regardless.. So hopefully they dont' need to go back in!   They will keep close watch to look for any accumulation of fluids.  They have her on 2 different diuretics to keep her "dry" dehydrated basically so that she doesn't have excess fluids to drain into those places.   She will also be on a very low fat (less than 1 gm of fat per serving) diet for about 6 weeks to help prevent fluid buildup in those spaces.   Her one drain had a pus pocket (I know gross) by it that they need to monitor and now her stenotomy scar is reddening in the middle.  So they will keep close watch on those over the next few days.

Rapunzel came to the beach today.  I had just told Lily that we needed to go back to the room to get the tubes out and she was very upset.  She didn't want to get anywhere near Rapunzel :( she just kept trying to get away from me.  This was the best picture I could get with the two of them before I had to scoop her up and carry her out of there kicking and crying.
We call her Edmonton Rapunzel... not quite Disney... She did have the long hair though!

Today she also came off her IV TPN so essentially she is "unplugged!" will make it much easier for her to get around and hopefully much more comfortable without those tubes in!  They will keep her pic line in for the time being which is just fine with me! she can have blood work done through it and then it's there if we end up needing to go back on IV fluids etc...

One thing I love so much about lily is her ability to bounce back.  She quickly returns to her happy self after any procedure.  A few hours after her tubes came out I said  "you get beads for having your tubes out" and she was so happy to get some beads! she loves to talk about what she's done and you know she's proud of herself she says " ya I get some beads cause my tubes are out!  I cried but I don't cry no more! and now I get some beads!" and then she laughs..  I love this little girl SOOO much!!!
Getting her coins out of her pocket to make some wishes


Haha really enjoying that popsicle!

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