More Pieces of the Puzzle

Today Little Man's ENT called with the results of his sleep study. Seems we may be getting some answers. Poor little guy wakes up 10 times an HOUR all night long. He has abnormal sleep architecture (not sure if that was due to the frequent waking or if it's in addition to it). I'm not really sure if it's due to apnea or his neurological issues. The nurse did double check that he's had his tonsils out already (he did when he was 3). We'll find out more at his follow up appointment. We're waiting to get Beans' results before we schedule it so if he needs to be seen we can schedule them at the same time. For some reason they haven't received Beans' results yet, but she was calling the sleep lab to follow up on it. Hopefully soon we'll be seeing more of this:
and he'll wake more rested. I guess this explains why he's tired all the time. Hopefully there's something we can do to help him out.

In other news, yesterday was a big day. First the bad, I had to notify the nursing agency that Little Man's night nurse fell asleep on the job yet again. She'd received a final warning in the past (just a few days ago in fact) so she's been relieved of her duties. This leaves us without an overnight nurse. The agency is recruiting another one, but it will probably take time. Meanwhile, I'm very thankful for his evening nurse and that it's between semesters for me so I can have a chance to nap when I can. Which leads me to the other big news of the day. My final grades for fall semester were posted, and I got all A's! I've proven to myself that I CAN handle school and the kids' needs.

I was terrified that when I went back to school one of the kids would get very sick and I'd drop the ball. Well guess what, the kids did get sick and I had to miss a bunch of classes but I was still able to keep it together. I think a lot of the fear came from last time I was going to school. Beans was about a year old. I went back to working full time and going to school full time. Over the course of the year Beans got sicker and sicker. I'm ashamed to say I didn't realize how serious the situation had gotten until I was forced to take time off work and school. Within a few months of me quitting work, we'd found a bunch of his issues and he'd had his reflux surgery and g-tube placed. I guess I've never really forgiven myself for letting things get so bad. He went to all his doctor appointments and everything, but it takes more than a checkup every couple months to truly care for special kids. These A's I made this semester combined with seeing Beans and Little Man thriving mean so much more than a letter grade. This means we're making it! We're making it together and WE CAN DO THIS!

Christmas Recital

Today was Little Man's much-practiced-for guitar recital. He had such a wonderful time. He loves performing, no stage fright for him. :D Music is such a love in his life and he works so hard at it. He played Jingle Bells and Away in a Manger. Jingle Bells he has memorized so he didn't even need his music. Away in a Manger he's worked so hard on for the past few weeks. You can see the concentration on his face as he plays away.
Grandma J and Grandpa R came to watch. Little Man was so happy. Beans even sat quietly for the vast majority of the recital. After Little Man performed, they were both ready to head out, but with some convincing and entertaining we made it until the end. So here, for your viewing pleasure, may I introduce Little Man playing his guitar. :D (Please excuse the shaking and video quality but at least you can hear him playing.)

Little Man is finally feeling a lot better and hasn't needed his albuterol in over twelve hours now. Good thing because his nebulizer (machine to give inhaled meds) died last night and we've had to rely on the inhaler. I'm so glad he'll be able to enjoy all the Christmas festivities at school next week.

Doing a Little Better

Little Man seems to have turned the corner. He's needing his albuterol every 2-4 hours and still sounds congested, but he did drink close to enough today. He's not really eating but that's not a big deal. You can tell like clockwork when the albuterol wears off. He starts coughing like a mad man. His headache is still there but ibuprofen helps that. He keeps getting weird flushing on his face and weird coloring on the rest of his body. Sometimes it looks like red spiderwebs all over his body, other times its red splotches, and other times it's purple lines. They come and go and don't hurt or anything, so I think it's just one of those "Little Man things."

I had to do what I was avoiding all semester today. Little Man accompanied me to my final exam. I set him up right outside the door with the laptop, went in right when the teacher got there, raced through my exam, then ran back out to get him. He was a good little boy. I think he felt bad enough that he didn't think of moving. Thank goodness! I'm now finished for the semester and so far - I know 3 out of 4 classes - I have straight A's!! Woohoo!

Tomorrow Little Man has his guitar recital and then we're planning on going to see Santa in Sopchoppy with Grandma and Grandpa. Next week is very exciting with the last week at school before Christmas. I get to help in Little Man's class on Thursday for their Apple Basket Diner, and Beans has a Christmas party on Friday.

Speaking of Beans, he brought home the most adorable paper. He wrote a Christmas poem:
"I like Christmas,
Dark green tree.
Colored lights,
For all to see!"

This is the first time he's ever done something like this, and I am such a proud Mama!

Little Sicky Man

Poor Little Man is feeling miserable. His teacher called yesterday for me to come pick him up. I got to his school and he was laying on the classroom couch obviously sick. He didn't even look up when I came into the room. I brought him home and he had the most pathetic little voice. Today he woke up with a barking cough and possibly even more pathetic looking. He's got a low grade fever, sore throat, cough, asthma acting up, horrible congestion and a headache. He only drank 8 oz over the course of the day. He did find enough energy to sit and play the computer for a while, but spent most of the day watching Nick Jr.

His evening nurse started today and she watched him while Beans and I ran out to get something he would drink. We got home and I woke Little Man and got a few ounces of Gatorade in him. His new nurse is so good with him. She directed him through all his evening steps with patience and watched him while I helped Beans do his homework without the normal constant interruptions. I even got in some study time for my last final tomorrow.

Tonight he's sleeping on the couch, propped up. He's needing his inhaler/nebulizer every 2 to 4 hours so my alarm is set for 3 am (his nurse is a CNA and not allowed to give meds). Nurse B is watching him closely and will come get me if he gets worse in the night.

Tomorrow I'll have to take him with me to my final. There's no way he can go to school and noone can really watch a sick Little Man. Wish me luck and concentration and please send Little Man all the get well wishes you can spare. He has his Christmas guitar recital on Saturday and has been working so hard for weeks on this. He needs to feel better so he can perform.

Happy Anniversary Beans!!

Today marks an incredibly special day in the life of our Beans - ONE YEAR since being inpatient!!! I can hardly believe it, yet here it is. One year ago today I brought him home from Arnold Palmer Hospital in Orlando. After being fed into his intestines for 4 years, it was time to consider having a seperate j (intestinal) feeding tube placed. To give him one last shot before having another major surgery, his GI admitted him for a week to see if we could get him onto stomach feeds using the feeding tube placement he's had since he was 2.Over the course of a week, Beans went from IV fluids with no feeds, to a very slow drip into his stomach up to 8 oz boluses every 3 hours! What a HUGE quality of life improvement. After years of wearing his pump backpack all the time, he was now free all day only needing to sit to be fed every 3 hours. Wow!!

To think, 18 months ago he had his PICC line for IV antibiotics, had his GJ pulled and an NJ placed because of his tube infections. A summer with that horrible NJ and now...fully g fed, looking good and the best he's ever been. How great is this!

Quick Update

I just wanted to post a quick update on the kiddos. It's a bit of a rough day. Beans threw up last night (which technically shouldn't happen because of his reflux surgery) and then put out 200 ccs of green bile last night. I couldn't send him to school like that so he had to accompany me to my final exam in English and my last nutrition lecture. Thank goodness he sat quietly. I vented him right before each class and he did okay. He did eat some tonight and is hooked up to Pedialyte now. Hoping he goes back to school tomorrow.

On top of that, Little Man's headache reared it's ugly head again tonight. You know it's bad when he turns off the radio in the car and covers his eyes. :( He's finally in bed now, lights off, face flushed and a cool washcloth on his face. I'm going to start trying to get ahold of his neurologist tomorrow. I just hope there's something that can be done to help him. He never complains of pain and this is sending him over the edge. :(

Lessons Learned

Last night both the boys had their sleep studies. I learned a few important lessons:

1. Even if the kids' specialists, nursing agency, home health agency, pediatrician, therapy center and SLEEP LAB are in the same area, do not assume you know where you're going as you're bound to become confused.
2. When you become confused, call for the address BEFORE you've found yourself in the middle of nowhere.
3. Tallahassee is not in GEORGIA, but it's easy to reach Georgia if you're hopelessly lost in the dark in a rainstorm.
4. When you're lost and feel like crying, CRACK JOKES at everything around and make the kids SING horribly off-tune Christmas carols with you.
   
5. Always bring a CHANGE OF CLOTHES for the kids. Pee happens.
6. Don't forget to EAT when you feed your kids dinner.
7. Tallahassee apparently feels the same way I do about 6:00 am. It's best to be SLEEPING.
8. You'll always find HOME eventually, and it's great when you do.