Friday, August 05, 2011

Brain Dump.

Last night I had insomnia. Actually, I've been having it a lot this summer. Not sure if it because I'm used to a much more busy and exhausting schedule during the year or if it is because I have some worries bouncing around in my head. Several years ago, my boss told me that she kept a notebook by her bed and when she couldn't sleep because she was thinking too much about something, she would write it down and then she could sleep. I tried it and it worked, but I got out of the habit of keeping a notebook by my bed since then. Last night I promised myself I would write this post in the morning as a mental compromise of sorts. Then I turned over, because when I was a kid who had bad dreams, my dad told me that there was a bookshelf in my head and if I didn't like the book that was open, I could turn over and the books would shift and a new book would open. Since then, I always turn over if I have a bad dream or need to think about something else. It usually works. Anyway, on to the list!

1. KayTar's breathing. Yup, she is still breathing strangely. Yup, it is still bothering me. We're having the same issues with getting in to see the pulmonologist as we did trying to see her mito doc. Insurance says she is in network, the facility says she can't be. Blurg. The other thing that is bothering me is that we won't see the pulmonologist until after school has started. I won't how we need to handle this while she is at school, if she needs accommodations in PE, ect. It might not be a significant issue at all, but we don't really know that yet and I don't like not having a clear idea of how to proceed.

2. KayTar's gut. We just upped her Prevacid because she was almost daily complaining of "throwing up in her mouth a little" or tasting her per g-tube meds. It seems like the increase is helping, as she's only complained of the throw up thing once since then. However, she had another off day with her tummy on Wednesday, not tolerating her normal feeds, vomiting for no apparent reason. I don't know why this is happening. Usually in the past, she has trouble with feeds when she is sick or very congested from allergies, but neither of those are the case right now. Then on Wednesday night, she woke up from sleep, crying, wrenching, and shaking a lot. Her glucose was fine, but the nausea was persistent and she wanted Zofran. No idea what that was about either. She is still having fecal incontinence issues, too.

3. KayTar's nutrition/formula. The gut issues led me to recalculate KayTar's nutrition requirements, because it has been a while since we evaluated that and I wanted to see how far from the mark she is on her bad days. Unfortunately, I discovered that she isn't getting her caloric DRI on days when she gets her full feeds. Thus far, it doesn't seem to be affecting her growth, but it doesn't give her much give for these low days or for when school and the Parade of Pathogens starts up again. I discussed it with the pediatrician via email yesterday and we decided to try Pediasure 1.5 Cal for her. She can get her DRI in less volume than she is currently getting, and on bad days, she won't be as far from the mark. Perfect, right? Then I did a little digging and found that it is generally less tolerated and kids often drink even less when on it. If her gut is already having some issues with tolerating her normal formula, I'm a little worried the switch might make things worse. Or it could be perfect. I don't know. I guess we will find out, though. The other underlying concern is that KayTar's neurological episodes are currently a thing of the past (we just passed the 2 year mark in July! YAY!), but the last time we switched formulas, from Pediasure to the generic kind, they reemerged. Anytime we mess with her formula, that always comes to mind. We hope that staying within the Pediasure brand will prevent that, but there is really no way to know. The truth is, the formula switch and the reemergence of her episodes might have been coincidental...but there is no real way to know. It is something that we think about, though.

4. KayTar's energy. We have had a great summer; two little vacations, swimming many days, some time with friends, and so on. However, KayTar has spent most of the summer in my bed. Literally. And on vacation, she spent most of the time in her vacation bed or mine. Not all of it, but a lot. It started at the end of last school year, she would come home, climb in my bed, do her homework, and rest until bedtime. This summer, she has spent progressively more time resting. If we go swimming or to the movies, she is fine, but gets back in bed when we get home usually. If we do something with walking, like the mall, she becomes fatigued pretty quickly. Most days she crawls into my bed when Josh leaves for work and is still there when he gets home in the evening. It is fine right now, we are all home and can accommodate her, but in a couple of weeks, school is going to start and I don't know how she is going to handle the transition and increased demands.

5. School. As I mentioned before, school generally means the Parade of Pathogens for KayTar. She's had a VERY healthy summer (knock on wood) with only ONE febrile illness, but school means exposure to a lot of adorable germ-infested small people. I'm worried about how increased infections and increased energy demands are going to affect all of these other issues. We are not going to have her breathing issues or her gut and nutrition issues worked out by then. I do hope it goes smoothly, I mean, she did well enough last year in Kindergarten...but it seems like a lot of these issues just started cropping up at the tail end of the year and have progressed a bit over the summer, so I'm still a little nervous about how she will handle it this year.

So that's that...hopefully with all of this written out, I can get a good night's sleep tonight! 

- Posted using BlogPress from my iPad


Becca said...

Oh, what a lot you have to keep in mind at all time. It's no wonder you have trouble sleeping!

I hope you get some answers soon. She is beautiful!

S said...

I will hope that you find answers to these questions, and solutions to the issues, soon.

Anonymous said...

"Parade of Pathogens"...I think I snorted a little.

Sometimes, a little time and a good brain dump are what we need. Hang in there.

alejna said...

You do have a lot on your mind. It's good that you can put all this down here. And hopefully relieve some of the weight on your brain!

Reading about KayTar's nutrition issues, I found myself getting all cranky again about that one doctor you sawa a few weeks ago with her "she looks fine to me" nonsense.

Gizabeth Shyder said...

I too loved Parade of Pathogens. Never heard that.

You and your family are amazing. Constantly in my thoughts.

Keep going, girls.

jill said...

It sure sounds all related. If she isn't breathing well, that would make her tired... or being tired can make not breathe well. Not enough calories could cause the fatigue, etc etc. I'm hoping one answer fixes it all and that you find it.

Cate said...

Love parade of pathogens lol. I hope you get these things figured out- I can only imagine how stressful it is- you and your hubby seem like amazing parents and I know you'll figure things out! In the meantime, chamomile tea always helps me sleep :)

InTheFastLane said...

That is enough to keep any mama up at night.

Hope you got some sleep.

kristi said...

Bless your heart. Hope she does okay once school starts!

~aj~ said...

You have every reason to feel a little anxious right now. That's a lot going on!

I also have trouble sleeping when my mind keeps thinking things through. I think writing things down is a great idea and I hope you've been sleeping better since then.