July 28, 2010

The "plan" revisited and slightly revised

It's only day 2 but I'm worried. Everything isn't going as smoothly as I had hoped. Annabelle is on 2 new medicines - Ditropan to relax the bladder and Septra to help fight infections plus she is still taking Zantac for her acid reflux.

Honestly, Ditopan is just a yucky medicine that no one wants their child on. The side effects are huge and Annabelle has exhibited many of them within the first 24 hours. She is flushed in the face, her body is over heating, she can't sleep. She was up until after 11pm last night and back up again at 3 am. This was after being awake ALL day. She was acting completely loopy last night as if she was all drugged up. It just really sucked and was very sad to watch. They have agreed to decrease her dosage from 2 cc to 1.4 cc three times per day

Today she has been a bit better, but not really for the best reasons. She has thrown up 3 times - at breakfast, during the so-called 30 minute morning nap and then during lunch. Branden thinks it's because she her nose is stuffy and she is gagging on her food or the foul taste of the medicine. I'm not sure if it's because all the medicines are making her belly feel sick - either way it's not good. It's disappointing because she is loosing the medicine and the little bit of food she ate.

Catheter training went well yesterday. My mom, Branden and I all attended and the nurse was very thorough and generous with us. However, doing something with the help of a nurse is always easier than doing it on my own. Branden cathed her last night and this morning and he did well - no real issues. I on the other hand found it a bit more difficult today at noon. I felt like I needed to stay home because she was due to cath at 11:45 but for any of you that know my boys you know that staying home doesn't always work. They whine and fight and make each other miserable. By noon I was pretty much over it and of course stressed out because Annabelle had already thrown up 3 times and it was getting very close to cathing time.

When I was ready to do my first cathing on my own I asked the boys to please stop running around the house like maniacs. Of course they wouldn't so I put them in the back yard to play - seems nice enough, right? Well, not to them. Within minutes they started fighting and because I had closed (not locked) the sliding glass door they assumed I had locked it. So, as I am trying to focus and hold her legs and private areas apart with one hand and hold this very tiny and slippery catheter with the other hand all while keeping everything as clean as possible the boys were pounding on the back door - good times!

I had a little trouble - girls have 2 holes which makes it a little confusing at times. I wasted two catheters and two diapers but I got it done. I know it will gt easier with practice and I will get that chance again in less than 2 hours.

I realize that some of you have and will say that I should let the boys watch TV to make my life easier when I'm cathing, honestly I don't agree. I really do not like TV and I don't like how my boys act when they watch it - they are zombies. Yes, it would technically make those moments easier because they wouldn't be loud or bothering me but it wouldn't make me feel any better as a parent. I believe that the children have the ability to learn to entertain themselves quietly 4 times a day without needing the TV as a babysitter. I use TV as a reward in the afternoon some days after we have played particularly hard, been super creative, or as time to relax if we will have a busy 2nd half of the day, etc. and I just can't in good conscience put it on to get them out of my hair during cathing time. That's just how I feel. Enough about my thoughts on TV.

Needless to say I have been a big ball of stress today, Annabelle is irritable & restless (fun side effects), she doesn't want me to put her down, the boys are feeding off of my stress and now are mad because I told them if they didn't nap I would not take them to music in the park tonight. Well, they have been messing around in their room for the last hour and not resting so I told them (in not so nice of a tone) - NO MUSIC IN THE PARK TONIGHT! So we have a lot of unhappy people over here today :-(

So, back to the plan:

They have decreased her Ditropan dosage and want me to play around with the times a bit to see if that helps with her ability to go to sleep at night.

I am going to attempt to spread her medicines out so that her belly feels better and she stops vomiting.

I am going to have confidence that I will get better and quicker at cathing

I will figure out a way to manage the boys high energy in a way that doesn't crush their spirit but still instills responsibility for their actions and respect for their sister

I am going to pray, a lot - "I can do all things through Christ who gives me strength." Philippians 4:13

5 comments:

  1. So sorry you (all) are having a rough day! I know you are a great mom and that you will be able to do everything that you want and need to do for your family. Keep your spirits up and if you need anything, don't be afraid to ask!

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  2. I'm so sorry Nic. I know I can't fix it but I wish I could.

    A tiny suggestion would be music? Maybe putting on loud silly music to have them dance around and sing to? I only say this because for some reason it's been a big thing in my house lately and they all manage to get along during the dancing time.

    You'll master this in no time, I just know it.

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  3. I'll be praying for you guys! I know that cathing stuff is hard but I promise it gets so much easier! I didn't think i'd ever get the hang of it but now i can do it in the dark, so i know you'll get it. Lila was recently put on ditropan too and it seems to make her irritable. I hope that you guys have a better night and a great day tomorrow

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  4. It does get easier! I won't lie, some days I feel like chucking the catheters across the room and think I may lose it if I have to feel KY Jelly all over my fingers for one second longer, but most of the time it's okay. You'll figure out the routine too. And yes, your boys will learn to cope with you being away for a little bit to do the business. :) I've timed mine with naps and snacks or I read them stories while I do it (they turn the pages and hold the books). All in time. It's never going to be your favourite thing and that's okay, but it won't be the worst thing either.

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  5. Hi Nicole,

    Mom says learning to cath me actually wasn't that hard. But she did freak out the first time she had to cath me herself (I was 5).

    Later on, it was I who was doing the freaking-out when I was trying to learn to self-cath. I'll confess, it wasn't easy. But, we all learn at different paces and I know in my heart that with your dedication to Annabelle's well-being, you'll master it in no time! (As for me, having finally mastered it in middle school, I can now cath sitting on the toilet, standing up near the toilet, in a cup or in a bag, or in the dark!

    Prayers to you!

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