I am pretty sure that this whole medicine thing could put me right over the edge. I have been crushing the pills, putting them in a syringe and mixing it with chocolate syrup. Some days are harder than others with her, but she prefers it any day over the berry medicine (Spetra in luquid form). Last night was particularly difficult. It took about an hour to get her to take it and when she did.. she ended up gagging and spitting some of it on her shirt/chest. Yes, it's a chemo pill and shouldn't be touching her skin. Also, I have NO idea how much of the pill she actually swallowed and how much was spit out. There was no way to know how much more to give/not give her. I wanted to cry at that point due to the fact that it had been a long/difficult day of whiny kids. I know how crucial the medicine is and I didn't know what to do. I ended up just leaving it at that because other kids SURELY spit their medicine out from time to time... I hope. I just didn't want to give her too much. It probably doens' t sound that stressful, but these medicines are supposed to be saving her life. Kind of a big deal. :)
She has been sleeping much better the past week. Now if only her brother would follow her lead. Man, just when I thought sleep could help me out...he has terrible nights and I don't sleep much. Sleep is overrated...that's what I keep trying to tell myself (but it's not working anymore). It is pretty cute though because Scott has been sleeping on her floor every night (per her request). I still keep the baby monitor on. He seems to sleep just fine (says he didn't hear Slade screaming for 1 hour straight last night). I then kept waking up because I "thought" I heard kids crying... so I would get up and ran to the other side of the house and check on both...and neither were crying. My heart would be pounding and I would feel some anxiety. Not sure why. Anxiety is my new best friend... probably not healthy. That could be part of my problem lately... hmmm.
Side Note...
Yesterday, she saw some hair that was shedding and told Taylor, " Silly kemia is making my hair come out!"
Scott told me that Taleah woke up this morning and told him, " I want a haircut." She has been listening as I have been encouraging her new buzz haircut like the other cancer kids and how fun it will be when all of the boys do it too.... and she can be the "only special girl".
(snapped it this morning before I left for work)It is still comforting to hear/talk to people that are so concerned for her and our family. It means so much. Can you imagine what I would be like without it... a COMPLETE wreck!
Sounds like you had a rough day. I'm sorry about that. Hard days are never easy. Medicine is difficult, no matter form it comes in. I'm about 99.9% sure that other kids have spit out there medicine as well. It'll be just fine. Just take a deep breath and get some rest tonight. I have a feeling Slade will sleep great tonight. :)
ReplyDeleteAw, that's a good way of telling her about the hair cut....see, you always come up with good ideas. I'm glad she's been able to get some rest and hope that you will be able to also. You're doing awesome Tosh!
ReplyDeleteI'm so sorry you're not sleeping. I hope it gets better soon. I slept on the floor next to Daph's bed from in Induction (she had a broken leg and couldn't walk so that made it harder). I got the cushions off of the couch and placed them next to her bed. It was hard to get her used to the idea of me sleeping in my own bed later on. The behavioral readjustments are hard. Cause you all NEED to get things as back to normal as possible.
ReplyDeleteWhat an amazing young lady to come so far in so few weeks to actually ask for her hair to be cut. That is an incredible thing. And as much as it is something you wish you didn't have to learn about her, she's probably even more amazing than you thought possible at this point.
Keep up the good work!
P.S. About the pills/meds- have you tried playing a game to see if she'll swallow mini m&ms or tic tacs? I had to crush Daph's pills for a long time, too. When they finally start to swallow them it is like the heavens open. So luxurious. And you'll get there. Especially when she realizes how mush easier swallowing them is. They don't taste yucky at all if you hurry and swallow them! We had a lot of times where Daph threw up her meds. The rule for that is that if it is more than 30 mins after they take the meds you don't have to give them again. Before 30 mins you have to re-administer. As for spitting a little of them up, that one is so hard. Cause who knows how much they got. We usually did what you did. Leave it. And you can always all clinic- except this always happens at night when they're closed!
Tosh, you are amazing. I really can't imagine how hard this whole process is for all of you. We pray for your family everyday.
ReplyDeleteYou are so amazing Tosh! Keep up the good work. Have you tried just cutting the pill in half and mixing it with a pudding or yougurt? Try yougurt that has the fruit in it and tell her just to swallow the fruit. We did this a lot at the nursing home I worked at for people that can not swallow pills. You are amazing and I know that you will find something that will work out.
ReplyDeleteGetting kids to take medicine is always a tough job... and I think it's even harder on the mom than it is on the kids! Our Bailey always had the most trouble. She "had" to stand on a certain tile square in the kitchen or it wouldn't go down. I remember going on a camping trip while she was going through this and Scott and I just looked at each other when it came time for her medicine. She found a place to stand in the trailer where it worked and then she was okay. Bless your heart for all you and Scott do. Prayers are wrapping you in a warm hug right now!
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