Update from last week: every one at stjude knows how much I hate an inpatient stat especially with two toddlers. We were very fortunate to have a few great nurses and sissy and daddy to stay with us-however let me tell you all about a few things that made me angry as well as therefore made my life a little more complicated. 1- olivias central line is pulled out a little farther thab normal. It is extra sensitive and has been since about june. I watch it often and make sure were not pulling it out more which is very easy to do. Her cuff (which is basically what holds it in place) is right on the inside/outside of her skin. You can see it amd you are not supposed to be able to. Anyways, the dressing changes I do over her line are different than the ones they do while you are inpatient. We hate them for more than one reason- starting with that they loop her line under the dressing. Because her cuff is so close to being out it puts her in pain and causes alot of irritation. I always try to tell them to not loop it and the nurses look at me like they have no clue how not to loop it. So they do it anyways becauae it doesnt hurt her the first 5 hours. Slowly though because of the irritation it bothers that area. 2- the dressings they do stick so hard to her skin that they usually end up breaking down her skin more therefore causing irritation and scabbings. She complains alot about it hurting and wanting mommys dressing. I feel bad because the nurses will only listen to me so much and get upset with me when I ask for a line nurse (which is who inserted her line). They think theyre not doing their job right and some might not be-other just simply dont know another way to not loop the line. Either way I think that degree or not I know my child bettter. I deal with her day in and day out. 3- that brings me to the other reason we dont like upstairs staff. We discontinued olivias seizure meds shes been on for the past 6months becauae she refuses to take it. I cannot fight with her anymore. Age 3 is a tough age to explain to. Theyre right in that I do everything myself phase. So we decides to take the risk of her having a seizure. We are very fortunate for dr. Khan and his understanding during all of this. However, another nurse was not so understanding to her not taking medication. Because they irritated her line by not listening to me, they caused a severe break down/bruising/redness to the outside of her line. Therefore, they wanted to start an antibiotic on a precautionary incase her counts drop where an infection could make things so much worse. I of course agreed but asked that they give us eclipse balls to come home with. These can be administered directly through her line by me and it causes no distirbance to her or me to have to fight her. She actually likes her medicine balls. The pharmacy had them available but this nurse did not want to give them to her but yet try a pill that has an awful taste. I asked what they presume I cover the taste up with since she only drinks gatorade and doesnt eat alot of liquid food. They suggested chocolate syrup. Now mind you at this time the drug was to be administered at 230am-830am-230pm-&830pm. Three of those times are prime times when you do not want to give your kid sugar. I simply laughed at this and said she doesnt eat chocolate since she doesnt. Not wanting ti listen to me and wanting to try it out once they ordered us pills to come home with. I broke it apart amd put it in her gatorade to try it. That almost reallt backfired on me. She refused her cup the rest of christmas as there was medicine in it and she did not want it. The main reason I wantes the eclipse balls (other than olivia being difficult) was to avoid ruining a drink or food for her. Althoigh she eats and drinks good- its only certain foods. It makes me very upset that they cannot listen to a parent that deals with their child daily (the clinic dr the next day changed her to eclipses no questions asked). 4- this is a simpler rant-- all nurses are not the same I know but if you choose to work in a childrens hospital where kids have cancer you need to realize that no one kid is the same as the next with anything- some kids like to play with everything (like mine). And aome kids are comfortable just sitting in bed playing their ipads or watching tv. Theres other possibilities too. My complaint is that nurses of children need to be more playful. We have oir favorites and are fortunate for them but it seems one nurse can always ruin the day somehow. I know I dont normally share all the bad parts of cancer but it seemed to me that everyone should know that our life is not always a simple fix. We deal with people we dont like too. And sometimes we cant change it. As fortunate as I am for stjude - housing and inpatient stays are the two things that I think could be worked on. On a positive note, the new year is coming. Were hoping this year wr can celebrate olivia being cancer free. We dont know if and when that could happen. We also know that because her tumor is so aggressive that it could die and grow back within a few weeks of being off treatment. Everyday is just another day we get with her. And that makes it hard to parent. We dont want to discipline but we must. We dont want to be upset with her over who she has become thru this but we do. Cancer changed my baby in so many ways. Our lives will never be the same. Sofia, me, jaron, my family, friends- everyone that is close to us has had eye opening experience throughout this. We are just very thankful that we have had the last year thru the ups and downs. Worst of 2014--taking my little girl on my birthday to be cit open to find out the next day that it was 98% sure to be cancer and that we would leave that weekend for stjude- not knowing at the time that wr would be expected to spend the next year of our lives in Tn. - having her tumor get bigger was the second worst. Those words its not working. We have to change plans and fast were so hard to hear. Almost worse than cancer. Best memories-- hanging out with my children every day. Seeing them grow up and bond like no other. --finding out they are going to be big sisters. --the support we have gotten from everyone ia overwhelming. We cannot Thank everyone enough for continued support. Somedays I sot and think, did I thank that person? And I dont remember but please know that we do appreciate everything and cant wait to be In a position to pay it forward like so many have done for us. Happy new year-- hoping that everyones year is better than their last.
Posted on: Wed, 31 Dec 2014 15:23:10 +0000