Latest update - please pray for Sicily and her family.
SATURDAY, NOVEMBER 22, 2008 09:40 PM, CST
Sorry I wasn't able to journal much today...pretty busy. And when we weren't busy, I just kind of sat and stared at Sicily laying in bed.
She went without pain meds for most of the day. We left it up to her to tell us if she was in pain and it seemed every time we asked, she shook her head no. As the day went on, she started to reposition herself in bed more and get herself comfortable, when possible. Her bowels are still not moving so they will keep her NG tube in her stomach a bit longer.
It was hard to see her throw up with a tube coming out of her nose knowing that it runs all the way down to her stomach. The surgeons did tell us before surgery that by the fourth or fifth day she might start throwing up...she is right on schedule! I still don't have a clue as to when she will be released. Not anytime soon if she can't make some "sounds!"
The oncologist is supposed to meet with me sometime on Monday. I will have to meet with the doctor by myself as Patrick will be taking the kids home so they can attend school on Monday. We really don't have a choice.
I've never felt so responsible for a person's life...Patrick and I have and will make decisions about Sicily's life...decisions that will hopefully sustain her life!
I hate to even bring it up, but there are definite concerns about her remaining right kidney...folks, it just doesn't sound good. Nothing is definitive yet as the pathology has still not been fully determined. But it was not what we thought we were going to hear.
Patrick and I naively let our optimism gain the upper hand, and this little bit of news came as a blow. We don't know what's going to happen! I go to bed sometimes thinking this whole experience has to be a bad dream and I'm going to wake up some morning and let out a huge sigh of relief.
Instead, I wake up and find my precious little baby laying in a hospital bed, cords and tubes attached to her and running in all directions around her...machines beep in the night and awake us from what little sleep we seem to recieve...she looks at us with an almost blank stare and we wonder if she is upset with us for putting her through all of it!?! Will she ever know we are doing this and did this because we love her more than life itself? How can a three year old child understand?
Some days my strength matches that of the strongest bridge...I can bear the weight of whatever may travel across me...other days, I'm as fragile as a snowflake and am ready to melt at the slightest bit of heat.
Sleep deprivation plays a key role in the latter, as it would for any normal human being. But as I told Patrick tonight, I have to force myself to be strong some moments, as I cannot let Sicily see the fear in my eyes, then she will become fearful, too!
It takes everything I have not to throw my hands over my eyes and pretend not to see what is going on around me! I told Patrick one of my key strategies with Sicily is to still be mommy...the mommy she is used to...the mommy that is firm when firmness is needed...the mommy who is loves her and who will do anything for her, but also does what is best for her.
When we decided it was time to get her out of bed this evening to go for a walk down the hall, she naturally refused. But we were firm and gentle and she ended up being easily coerced out of bed. She did really good and proved to herself she could do it, with mommy and daddy holding firmly to each hand. I left the hospital soon after that, and on my way to my sister's house,
Patrick called to say that Sicily was complaining of her stomach hurting. I actually took that as a good sign...the surgeons said she may need the morphine more when she starts getting up and about, and that seems to be the case. Walking around could help get certain organs moving again, and we could get our walking papers. My expectations are low, so as to not get too disappointed if we find ourselves still inpatient come Thanksgiving. I'm not actually worried about that, I just want my baby to feel better, and feel better quickly!
Thanks for listening to me ramble and vent...that's why I would feel lost without my CaringBridge!!! You all have been beyond amazing with all the support coming in so many different forms, but my favorite, naturally, are the prayers! May God Bless You All! I'm going to go try and get a good night sleep, so the bridge will not crumble or the snowflace melt!