Wednesday, September 16, 2009

It's a love/hate relationship

I guess I should be posting this on Lillian's blog, but it's a little too much me to post at the moment. I feel raw. I thought I was ok today, but one vomit fest and I'm back to ground zero. I have so much to be thankful for, grateful is even a better word. Let me explain. We had a follow up visit to the Pulmo team Monday. Needless to say, it was not great. They do not seem optimistic that she will be decannulated this year. Devastating blow. I cannot even explain it. I cannot fathom my poor baby suffering through another miserable winter. I thought I came to grips with, until I changed her shirt this morning and must have wiggled that little piece of plastic too much which started a vomit fest. I was so angry. I still am, I'm just trying to hold back the tears because one of our therapists is on her way and I don't want to be a mess when she arrives, although it's probably hopeless, because I'm a crier. STUPID secretions that are there because her trach is there....stupid little piece of plastic that makes our life so difficult, hers ecspecially. Stupid piece of plastic, but gives her breath and life. I'm so beyond my threshold right now. SO beyond it.


Alicia said...

Sweetie, I am SO sorry. I SO totally understand where you are coming from. This trach thing is such a mixed bag. On one hand, it gives her life. On the other hand, it makes life so much more complicated and, too often, unpleasant.

I am sorry you got that news too. It sure is a hard pill to swallow. Just know that I am praying for you and sweet Lillian. I have been where you are a hundred times since we heard the news and I'm sure I will be a hundred times again. I am right there with you. And I am here for you.


Colleen said...

I'm sorry you are heartbroken....I'm sending you a great big cyber hug! I totally know how you feel about getting yourself together before the therapist comes over. I had one of those cry days last week and the lady probably knew I was a mess. Oh well :)

I'm praying for you!

Vickie said...

Oh Hon, I am so sorry!

I think about you guys often and say prayers for you at church and even at the dinner table when we say grace.

{{Big Hugs}}

The VW's said...

I am so sorry that you got this rotten news! I wish that there were something that I could do to change this for you!

I hate this part of having a child with special needs! You get your hopes up and then they are shot back down! I don't understand what it is like to have a child with a trach, (Although there was a time that we were told that Gavin was going to need one, but thankfully he finally came around and din't need one.) but I can only imagine how stressful it must be! And, the fact that it makes her gag and vomit would make it all the more difficult! UGH! I really feel for you right now!

Just know that I'll be thinking of you and PRAYING!!! Keep giving it all to God! I pray that He will give you the strength to endure this road that you are on! LOVE and HUGS!!!