We have been home since Sunday night. My in laws kept the other kids one more night so that we could get Liv settled and figure out how to do all our new routines with her. She is most at risk from getting an infection from her own body. Meaning the bugs from her own skin, mouth, butt and gut 🙂 So it is very important that she has great hygiene. We have to be sure to bathe her once a day and brush her teeth twice a day. When she goes #2 we have still been wiping her to be sure she stays really clean down there. The tricky part with that is that for 48 hours after she has chemotherapy, her bodily fluids are contaminated with chemo. So we have to be sure that we wear gloves to handle either her, or her pull ups in the morning.
So anyway, we got home from the hospital that night and gave her a bath. Then we tried to give her her medicine. It took about 30 minutes before we got it all in her. She’s on quite a few different drugs including steroids, antacid, antibiotic, pain killer, anti nausea, etc. After having to take so much medicine in the hospital, she was so over it! I think she is just sick of taking medicine, but I also think she’s so angry that she feels so yucky, and doesn’t know why. She doesn’t understand what is going on with her body, and why she feels the way she does 😦 It was a fight to get them down her that night. Her whole demeanor was basically the same as in the hospital, just really sad and whiny and withdrawn. We got her all tucked in for bed and she slept the whole night. Which means I slept the whole night! Wahoo!
The next morning my in laws brought the other three kids back and Liv’s face just lit up! She was so excited to see them! They played with some of the craft stuff she had gotten from sweet people while she was in the hospital for a few hours.
By about noon though, she was tired and got really cranky again. She was sad and whiny and any loud noise from her brother or sister bugged her so bad. She still wasn’t eating or drinking hardly anything. By 5:00pm she was exhausted and so, so sad. She was asking to go to bed but we had to keep her up until at least 7pm to do her medicines. When 7pm finally rolled around she was cranky beyond words. We brought her medicine out and she absolutely would not take them. She was covering her mouth, yelling at us and crying that she didn’t want them, it was so frustrating and super sad to watch. We eventually had to hold her down to get them in and then she just gagged on them. Having to do the meds right before bed is rough because then she is all worked up and upset. I went to bed that night completely exhausted and on the verge of tears. I just kept thinking, “Is this our new normal?! Do I have to console and comfort my little four year old all day long? Do I have to fight her to take her medicines every morning and night? Will I ever have time to clean my house again? Will she ever have fun and run around with her siblings again?” So many questions and overwhelming fears were entering my mind. I didn’t sleep well that night. Liv woke up at 1am crying and saying she needed to throw up. We sat with her in the bathroom while she screamed for about 30 minutes, and then all of a sudden she snapped out of it and was ready for bed again.
We woke up the next morning to Liv acting the same way as the day before. She was just sad and withdrawn. She didn’t talk much at all this day and was still refusing to eat anything. All she wanted was to lay on the couch, and have me sit on the end of it by her, but not really touching her. She complained a lot about her throat and feeling like she needed to throw up and I just new it was reflux. She fought us so hard on the the meds and it was exhausting trying to get them in her. We decided to let her give them to herself that night because she was just fighting us so much. We thought we would give her the option of doing it herself, and maybe it would go better. She gave it to herself in little drops at a time and then would gag and take a big drink between each drop of medicine. By the time she gave herself the two liquid meds, she had pretty much drank a whole glass of water. She pushed the last little bit of the Zantac in (which tastes terrible and is her least favorite) and then gagged so hard she threw up on herself and the floor. This set her off and she started bawling. I wanted to cry too because after all that, she just threw up a bunch of medicine! Ah!
My sweet friend, that takes all my pictures, said she would do a family photo shoot for us. I was so grateful for this because I wanted pictures of Liv before all the big changes like weight gain and hair loss started. I wanted to remember what she looked like before the cancer took over 😦 I know it sounds silly, but I prayed that she would wake up the next morning and be happy and cooperative for the photo shoot. My prayers were answered! She woke up Wednesday morning and was happy and excited about getting all dressed up in a pretty dress and jewelry. We did the photo shoot and she was just like her old self. She was happy and ran around with the kids and had fun. It was so great to see her like this! We came back home, and I figured she would withdraw again. I thought that she was only happy because she was distracted. But, I was wrong! She was happy the whole rest of the day! It was such a great day and gave me such hope! Maybe we could do this 🙂