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Boy is Joey a fighter. I can't begin to say how rough this week has been, with bloodwork, urine work, the biopsy, the reults we do have, etc...
Curently we only know that the infectious disease specialist tested for everything they could and it was all negative, so its not something that they cover. The respiratory team says his lungs sound clear, though his breathing is so raspy. And we MIGHT have some results from the biopsy as early as this afternoon. I am praying we have some result, so we can treat it. The nurse are already talking to me about shrinking it, and that tells me some things but it may be I'm just reading too much into words. We have prepared ourselves to hear the words every parent hates, "Your child HAS cancer". But we haven't officially heard anything yet, though the oncology social worker has already asked if we want her here when we talk to the kids and asked about if they will need some counseling, so again that tells me something. They told me upstairs the Onc social worker gets involved with the families of kids with cancer.
Joey is in a bit of pain but today they could finally give him something. You could see the pain in his eyes, even though he was just calm as could be. ONce he got the meds he was back to his normal happy self and that pain in his eyes was gone, he's bright eyed again. The nurse have said how good it is to see such a happy baby, he doesn't even cry anymore when they draw his blood, he just looks at me and whimpers lightly.
He is no longer allowed to lie flat on his back, its too much pressure on his airway, and when he's asleep he's supposed to be on his tummy, which he loves. He's learning to crawl here. And he will learn alot of other things here.
He has to stay for a long time, we know that already. Sending him home while we wait is dangerous, they have to monitor his resp rate, his pulse, his oxygen levels. His heart rate is a bit high at times and once it hit 204. Boy that scared me. But it dropped back down on its own. The staff here is greqat. One of his alarms goes off and they are here within seconds. They introduce themselves as soon as the shift starts and let me know what the plan for the day is, and they have some great volunteers. I got a chance to go to the cafeteria today and eat breakfast while a volunteer sat with Joey, with a promise they would call me if anything happened or if any doctors came. They aren't leaving me in the dark, the moment test results come in, theres a doctor to tell them to me.
We are being extra vigilant about infections and are closely monitoring his surgery site. Any infection could delay treatment, any illness could as well. I look forward to different milestones I see in the other kids on the floor, such as riding the wagon outside the room, going downstairs to visit, and one day going home. But our fisrt milestone was a biopsy, our next is an official diagnosis of exactly what Joey has.
I have free access to the kitchen, the linen closet, the supply room. It makes me feel more like a mom to be able to get his change of clothes and change him, to change his bedding myself, to go to the kitchen and get his formula myself, or his baby food and pick it out myself, or feel like I'm "shopping" for diapers when he needs them. ANd its helpful to me because parents are allowed to get food from the kitchen as well so I get some of my food from there each day, and drinks as well. Its designed to feel more like home than the other floors since the kids are here so long. I give him a bed bath every day and that feel so good to be able to do.[/b]
Thanks to Jaidynsmum for my siggy!
Proud former foster parent to a teen. Waiting on our next call. Proud Aunt to 22.
Proud mommy to 7 angels. Survivor of 4 failed adoptions (5 kids)