12/20/14 So tonights note finally catches us up. We are exhausted. Neither one of us is processing well but we are reassured at the progress she has made. Sleep exhaustion and stress are not a good combination. It could always be worse, so well continue to look at the positive. The nursing on the oncology floor is phenomenal. No complaints. The sono confirmed the clot and shell be getting an MRI venogram in next day or so. Its the weekend and nothing gets done on the weekend in a hospital unless its emergent. For everyone else, its merely a hotel. Today she woke up in significant more pain than prior mornings. We only gave her one dose of pain medication yesterday to try and cut back. So, we gave it again this am and it helped. She does better with it. She continues to poop well for us, so we are not worried about it backing her up. She is so proud of herself when she goes on the potty. It took us a long time to get her to this point, so we are so proud that she still wants to participate in that function. She participated with PT today and did very well. She is really enjoyig her PT sessions. Today she got to kick a beach ball, toss a few bean bags, and then walk around a bit. They gave us a abdominal belt to help us when we walk her. Speech also saw her eat and feed herself. She is starting to use her left hand more and despite eating slow and not able to grasp the utensil perfectly, she is determined. She also burped much less today because she wasnt wearing her abdominal binder. Neurosurgery stopped by today (they didnt round on her yesterday, so we updated them on her) and they were happy to see her improving. The doctor keeps winking at me and telling me that it will get better. His goal is to get us out by Christmas. It is a realistic goal but we just want her safe! We already know what it feels like to spend Christmas and New Years in the hospital, so another wouldnt kill us. Santa visits the kids here too, He never leaves a child behind. Endocrine didnt stop today. They did cut back her urine testing to daily now and she transitioned from her steroid to her new stress hormone- hydrocortisone that will be three times a day medication. There is still hope that she wont need it, but they want to wait a few weeks before they test her again to check. Its for her safety. *keeping our fingers crossed* Oncology stopped by and ordered her MRI. They were reluctant but after speaking to radiology, they knew they couldnt ignore what I was describing about her collaterals on her torso. They are quick to downplay it, but I want proof. Kaylah likes to do the rare things and it is for her own good that she has this done. I was very upset last night when one of the residents came in to evaluate her. The resident proudly and snoot-ably said it was due to the cancer to help explain why she is recovering with periods of waxing and waning. She repeated its due to the cancer 6x in 2 sentences. I was taken back. Not because it wasnt a possibility, but more so because she was simply wrong and heartless. Ultimately we ARE in the hospital because of the tumor however, the problems we are dealing with are due to medical complications from treatment and not due the mass itself. There is a difference. I told her my concern and said she offended me. She goes, we are told in our training to be as straightforward as possible and asked how could I have said it differently? I told her I was not sure, but that you are not going to belittle two parents that know exactly how her tumor behaves - be it cancerous or not. We have 5 years experience with it and 6 years with her. It was very obvious that she has not had children nor does she understand what its like to walk this path. Kaylahs tumor is classified as benign and slow growing but it is also considered malignant due to its size and the fact that is located in her brain. It cannot be entirely removed for it would cause her almost certain blindness and more importantly would have a high probability of death. Cancer is not just a word you throw around. If you dont know how to use it appropriately dont use it at all. We understand the ramifications of her condition, it but the way this resident said it was cruel. She has a lot to learn on her medical journey. Kaylah was treated with more OMT this evening. We want to give her every advantage we can to continue in a positive healing direction. Tonight around 9pm we gave Kaylah Motrin for the first time and she did well with it. She has been super happy tonight watching movies, playing games on the iPad, and pulling apart a loomed oven mitt I made for her to unravel. I will remake her another once she has her fun with this one. It was a very thoughtful gift from family members, therapeutic for both mommy and Kaylah.
Posted on: Sun, 21 Dec 2014 07:54:57 +0000
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