Day -8: Today was a relatively quiet, routine day for Ryan and I. As every day has been so far, it mostly consisted of giving Ryan medicine. We usually wake up around 8:30 when the nurse comes in to check vitals. I feed Ryan and then spend the next 30 minutes or so giving him his oral medications. I have to give them to him in small doses or he will spit everything out. Over the past couple of days, he has gotten really good at holding some medicines in his mouth and tricking me into believing that he has swallowed them. Then, when I lease expect it, he spits the medicine out. :( So,it takes me a while to give 3 oral medications and to swab his mouth two different times - once with a mouthwash to kill bacteria and once with a mouthwash to kill fungus. While all this is going on, Ryan receives 3 different IV antibiotics- each takes about 30 minutes to infuse. This morning, after all that was finished, Ryan had a dose of Zofran to help with any nausea he might experience with his chemo and then he had his first dose of Fludarbine. Since it is a chemo drug, the nurse had to wear a special gown and goggles, and she had to put down a special cloth near Ryans line. All of these precautions were just in case any of the medicine leaked line or spilled out from the vile. If any of it got on skin, it could burn. Knowing this made me real excited that they were putting it into my babys body (can you sense my sarcasm???). Ryan did really well with the medicine, and so far I havent seen any changes in his mood. Im really hoping that this continues to be the case for the rest of the week. :) The rest of our day consisted of more medicine (mouth care is done 3 times a day and IV antibiotics are given every 6 - 8 hours). In addition to all of that, Ryan also received his IVIG treatment today. He was given benadryl before his IVIG, so he has been super sleeping all evening and zonked out early tonight. While Ryan was sleeping off the benadryl, we moved rooms again. The room we have been in for the last couple of days was a temporary home while we waited for a room to be fixed up (they are very busy on this floor and some of the rooms had some minor repairs to be done to make sure that the rooms are safe). So, we are finally in the room that we will be in for the next month. We will change rooms again at the end of 30 days in order for our current room to go through a deep cleaning. I am happy to finally be settled in a room, and tomorrow I will spend the day unpacking and decorating. So many of you have sent us cards and I want to decorate the room with positive notes to keep Ryan and I strong. If you would like to contribute to my room decor, feel free to send us a card or an e-card. If you want to send a card, you can mail it to our house and Bret will deliver it to us (you can send me a private message and I would happily send you our address) or you can send an E-card ( cincinnatichildrens.org/patients/resources/ecard/ ). After our stay here, I hope to do something special with all of these cards to show Ryan how many supporters he had during his journey. Thank you for being part of our support system. We are so grateful for all of the love and prayers that you all send every single day! Have a great day!
Posted on: Tue, 13 Jan 2015 04:25:05 +0000
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