Please humour me while I whine. Actually, I'm feeling angry today. I feel like screaming "how much can we be expected to take?"! Today, we found out that shadow or spot on Kean's liver is a tumor, a pretty decent sized mass. Since it's a holiday weekend, we will have to wait until Tuesday for all the specialists to be in for further testing. Kean will be given a sedative, put under and given an MRI. A Pediatric Oncologist (Cancer-- yes the big, ugly C word) and a Pediatric Hematologist (Blood specialist, I think) will be overseeing the procedure. So I'm worried about putting the little peanut under and also, of course, what the results will show. I tell you, I cannot, cannot, cannot handle watching a child go through cancer. It will be too much. When we found out he had Down Syndrome, I consoled and comforted myself by saying, I can handle this-- thankfully, it's not Cancer. I couldn't handle that. So just know, if it is, I might as well be institutionalized. I'm done.
They say to expect to take two steps forward and one step back in the NICU, but today feels like we went way, way back. What a lousy day for my mom to leave town and go home, eh? I'm back on the tracks of my emotional train wreck.
We also had a lousy day in the breast feeding department. Kean is latching on and sucking (he did 20 minutes today). But a pre and post weighing showed he's only getting a small amount of milk. The Lactation specialist and Occupational Therapist both believe he is "chomping" like a baby does to get milk out of a bottle instead of drawing out and sucking as he should on a breast. So we will start the training back at square one, change the type of bottle he's using when I'm not there (he still has his feeding tube for most of his eating) and see if we can't salvage this whole breast feeding operation. At least now I know why my breasts have been so horrifically sore.
So life totally sucks today. Sorry for the use of the word sucks so close in proximity to the update on breast feeding.
Saturday, September 5, 2009
Can I just quit this hospital thing?
Posted by Lonni at 6:49 PM
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6 comments:
My prayers will be with you guys. Please keep us posted and hang in there. Tomorrow's Fast Sunday, perhaps asking for some prayers are in order?
I am so sorry to hear about all the setbacks. He was doing so well too. I am sure this will be another test of faith and how much of a fighter he is. You are in our fast tomorrow. We love you! Let me know what I can do to help. Seriously, call me even if you need someone to come and visit or just to whine too, because in a way I have been there too. Love ya!
Lonni,
I can't imagine any words from me can bring you and Byron any measure of comfort today, so I won't being to try.
I will continue to ask for the Lord's protection for Kean.
You are in my prayers.
Love, Cindy
Lonni,
I am so sorry that you have to go through something like this because I know all too well how difficult NICU life is. I wish I could tell you that the ups and downs will just plain end, but they will not and it will probably feel like most of the time you are at your wits end. However, I KNOW that you can make it through just rely on the prayers, service, faith and love of those around you. Kean is in very good hands right now, Eden, because of her DS seemed to struggle with every little thing and she had her share of set-backs, but oh what a wonderful spirit always surrounded her. Try to fill yourself with Kean's absolutely perfect spirit while you are with him so it can sustain you when you are not there. I know it is so hard and I am sorry, but the Ridgway family prays for you and although I do not know you, you have a tender place in my heart with your very sweet, special boy. I understand the fears and anxiety you are feeling on all levels, but it will get better. I promise you!
Love, Keisa
oh Lon I'm sorry you have to heap your already full plate with a little extra helping of worry about this. thinking/fasting/praying for you and the Lean Mean Kean Machine today...
There is nothing any of us can say to make any of this seem ok or make sense. Just know that that little guy needs YOU and that is why he is YOUR son. It will all turn out ok and as it should. You are in my thoughts.
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