Saturday, October 31, 2009

Can it get any worse???

Just a quick post. Josh has RSV now. I ended up taking him to the Urgent Care late last night since his breathing wasn't great and he looked soooo awful. I got it caught early enough that we hope to just do meds and breathing treatments at home. So far today he is not any worse so I 'think' it is working. Poor boy is really sick. He was also tested for H1N1 which came back positive as well. Big surprise.

Friday, October 30, 2009

Today's Project........ done!

Today we had to get Josh's room all set up for night feedings. Of course since it was a big project I woke up with the symptoms of the H1N1. So needless to say this was the ONLY thing I got done. But it is done and so far tonight he is sleeping peacefully.

So I took a couple before pictures of his room. He had toys in there and spent quite a bit of time in there.

Before= Fun room

After= Not so fun room.
Now there is no toys in there (they got put downstairs or in a corner of the living room) and there is all of his feeding stuff.

You can't see his pump and IV pole... it is just to the right of the crib in this picture.

Now, my other big problem with night feedings was keeping our two year old from pulling everything out and 'feeding' the bed or floor. I came across a blog recently of a mom who came up with a good idea to help solve that problem. It was genius I tell you!!! So here is my attempt at the same thing. I cut a small hole in his jammies and sewed the edges up and ran his tube through it. So far so good.

And since I didn't want it hanging out before it was time to actually go to bed... I did this. Scott laughed at how it made him look. I was just glad for out of sight, out of mind!

Other than that big project of the day, we are still chugging along with the flu. Trevor's asthma is still pretty bad, but he is feeling a bit better. I am glad I haven't seemed to get it so bad I can't function. I am soooo thankful that it came on Scott's two days off so I can get more rest.
I will post an update tomorrow. Pray that Josh isn't more sick than he was today.

Thursday, October 29, 2009

Update on the kids

I think I have a new hatred for the H1N1. I am stuck home, I can't have anyone come here and I can't go there. And I have three kids wanting me to hold them at the same time. 7 days is not coming fast enough! I say 7 days, cuz that is what the doc at the ER told me to expect for the kids to not feel well. Sigh... it's going to be a long time!

So... Trevor is doing better. He is through the fever, shakes, chills, ect. but the cold part has got a good hold on him. His asthma has gotten pretty bad and I am doing breathing treatments around the clock. He has thrown up a few times from coughing so hard. I feel so bad for him. I hope he feels better soon.

Jordan is on day 2. He has had a high fever with the aches, pains, chills... ect going on. He has had periods of time today he seemed to be a little better, but then it comes back with a vengeance. If it follows the same pattern as Trevor.. he should be slightly better tomorrow.

Josh has been coughing on and off today. That is how it started with both Trevor and Jordan. But..... his could be reflux related too. I don't know for sure. I have been in contact with his GI doctor about his feedings and ect.... for the last couple weeks and she finally called today to 'chat' with me. Josh is not getting enough calories a day anymore, mostly because he does not tolerate the bolus feedings very well anymore. So we are going to start him on continuous night feeds. It has been a pain the rear to get going though. It wasn't as easy as it seems. The crib we are using is Scott's old crib (ours broke several months ago) and it is basically being held together and in place by plywood and his dresser being shoved up against it. In order to have room in his room for the equipment for his night feedings, I need to move the dresser. But if I do.... there goes the crib. So my sister in law has been so awesome and is going to switch us... our toddler bed being stored downstairs, for her crib. My niece is using it in the toddler setting, so they don't need a crib anymore. So we are going to switch around and start night feedings tomorrow night (thanks Raeanne.... you're a lifesavor!). We'll see how this all works out.

So.. that is the update on our family. We will hopefully be swine flu free by next weekend and be able to come out of isolation. Wish us luck!!!!

Wednesday, October 28, 2009

Spoke too soon!

We have that yucky H1N1 Swine flu at our house. I have done as much as possible to protect our family and we still got it!!! Trevor and Jordan are the one's sick with it as of now, but that will probably change with our luck. Trevor had to go the ER last night for some meds and IV fluids. He is doing slightly better today. Jordan is only on day 1 of it.... so who knows how sick he is going to get.

So we will be not going out of our house for awhile and we don't want anyone to come here. I'll keep you posted on how it's going.

Monday, October 26, 2009

It's that time of year again

for this...................................

Trevor caught a cold this weekend, a very minor one actually. His asthma on the other hand.... got out of control. I kept him home today to take him to the doctor. And so begins the nightly and possibly morning breathing treatments. We are going to start with singulair again and if that doesn't keep it under control we will add a second nebulizer med. It's the most wonderful time of the year! We are officially going to look like a pharmacy with our line-up of meds for the kids. Nice, huh?

Also, Trevor's doctor warned us that asthma and the flu don't mix well. It can be one of the underlying conditions to land him in the hospital if he gets it. So now we have even more reasons to keep the kids out of the crowds. I guess we'll see everyone next spring. LOL!

Saturday, October 24, 2009

NICU Reunion 2009

Today was the NICU Reunion. They did a Pirate themed Halloween party. Since two of my three boys were NICU babies, we try to go. Josh was not too thrilled over the whole thing... it's been a sensory over-stimulation day for him.

My camera takes crappy pictures, but I was trying to get one of the whole room and how cute it was. There were alot of people there.

At least we finally found something Josh would settle down for. Too bad it is on his 'no-no' list because it has soy in it. Sometimes you gotta do what you gotta do.

Now onto some other news. We FINALLY have Josh's sleep study down at Primary Children's scheduled!! It is going to be on Nov 4-5. It will also be a full EEG as well... so that is going to make for an interesting night.
And in other news.....we are officially going in hiding for the winter. With all the H1N1 going around and the fact that we aren't sure about Josh having the vaccine (cuz of his egg allergy) and the fact that you can't find any vaccine's around here now, we are buckling up for a isolated winter. We welcome anyone to come see us, but if you have been sick or anyone in your house is sick... please wait. We want to keep this flu season very uneventful! LOL!

Thursday, October 22, 2009

Some inspiration

I have been doing more research on autism lately, and trying to find some ideas on what to do to help Trevor. He has been having some struggles and you never know where you are going to find that 'one' idea that makes a difference.

I ran across this poem while doing my research and was amazed at how well it described Trevor. I thought I would share it with you.

I am Trevor.

You may not understand me, or the way I feel today. You may not understand my reasoning for the things I do or say.

The reasons why I'm so loud and say things over & over again, Why I run so differently or lose my homework every now and then.

I write my letters backwards and sometimes numbers too, and when in conversation, I'll say "Guess what?" 100 times to you.

Too much noise, light, or excitement can set me in a spin. I don't like the way these pants feel rubbing against my skin.

I try to be good, but sometimes it's hard to control, I have to do it, it's an impulse, I don't always do what I am told.

Ketchup, Ranch and BBQ sauce on everything I eat, sometimes I have days that I just can't sit still in my seat.

I like to talk a lot even when it's out of turn, my mind plays tricks on me and interrupts what I'm trying to learn.

Sit up straight, wipe my face, and play ever so soft, some of these things I have trouble with and I usually lose my train of thought.

I didn't mean to spill the milk mom, or slam the door so hard, everyone else is done with their homework, I don't even know where to start?

My heart's as big as gold, my feelings get hurt too, I get sad, cry and have bad days just like you.

My brain works differently than other girls and boys, but one thing always holds true, I can give your life so much joy.

I get frustrated so easily and my hand won't work that way, I don't understand why those other kids won't let me come over and play.

Please don't think of me any differently or love me any less, I'm just like other kids and trying to do my best.

I am very special in my own unique way, and every moment with me you'll never have a dull day.

I am Mom.

I love you more than the sun, moon and stars, my little miracle you've come oh so very far.

Each day that you grow and learn and love, I thank God for everything in the heavens above.

You are sweet, smart, and funny, all rolled into one and you have so much love to give, you're my whole world, my very special son.

By: Kelly Graham

Monday, October 19, 2009

Another trip to great PCMC

So today was supposed to be a very low key day. Not a whole lot going on and nothing big to do. Josh must have heard me say that... and decided to give me something to do.

This morning Josh walked up to me and I noticed it didn't look like he was wearing a onesie under his sweats. I pulled up his shirt and his G-tube, or button we call it, was not there!!! Imagine the panic that came following that realization! So I ran him over the the living room floor, yelled for Scott and grabbed our emergency G-tube kit. I grab his button that is in the kit and attempted to shove it back in. It was not even CLOSE to fitting. I start to think that this could be really bad. So I start opening the catheters they put in the kit to use to keep his stoma (hole) open. The next size down won't fit and so I had to go with a smaller size. I really had to shove it in. Of course you can imagine the screaming going on. Scott decides to take a turn at trying to get his button to fit. I pull out the catheter and he tries. He says the same thing I did... there was no way that was going to fit. So we tape the small catheter back in and I call his GI doctor's office first. For the first time ever ( and we have been going to this clinic for a year now) the nurse actually answers. She puts me on hold and finds his doctor. She comes back on the line and tells me that they will squeeze us in at their office, instead of making us go through the ER. Halelujah!!! So I throw together some stuff and head to PCMC.

Once there, they pull off all this tape and put some numbing stuff on the site. We wait for 20 min. In the meantime my sis-in-law (who works at PCMC) comes to keep me company. After the numbing stuff is in effect, the Physician's Assistant comes in and takes the catheter out and proceeds to 'make' the stoma bigger so she can shove the button in. Believe it or not, Josh never even cried! His lip quivered a few times, but that was it. We got the button back in, just a little bleeding, and bandaged him up. After checking for placement we talked for a few minutes about his constipation. She was messing with his tummy and could feel it rock hard. We also talked about reflux and I found I am on the right track for some changes I have made. I will post about that later though.

So... Josh is fine, but will be sore for a day or two. Not bad to make it almost 5 months since his G-tube was placed before having a problem this big. Let's just hope it doesn't happen again!

Thursday, October 15, 2009

So what have I learned?

This week has been Scott's first week of his new schedule. He now works mon-thursday from 2:30-11pm and sundays from 11:30-8pm. Tonight is night number 5 of me doing the whole single mom thing with the boys, getting them fed, bathed, homework done... ect. Let me tell you, I am tired!

I have learned that Josh takes more time than I thought... and I never have anyone to help me hold him down for the things he hates. I have learned as well that he is not a kid you can bribe and even smarties does not work. Awesome.

I have learned that Jordan must have a book of 1001 reasons he can't do what I asked him to do.... hidden somewhere in this house. That kid can make up the most amazing excuses.

I have learned that Trevor must like to do his homework and reading with only Scott, because I have had a fight on my hands every night over that. He has usually asked Scott to help him, but I thought it was just because I was busy. mmm... nope.

I have learned that the only way I can survive each night is to laugh. Sometimes it's all you can do when things are chaotic.

I have learned that I can multi-task even more than I ever thought. I wonder if there is some kind of talent contest for that. I might win.

I have learned that multi-tasking with a G-tube is NOT a talent I have however. I can shoot water or formula on my 12ft ceiling. Maybe I could win an award for that though..

I have learned that it takes much more planning and organizing to make things run smoother than I have now. This weekend will be a re-evaluate and plan time for me.

And the last few tidbits of info I learned this week? Orange Gatorade does not come out of the carpet, Hot chocolate and white shirts are a bad idea, Josh is not allowed to touch his G-tube anymore, corn dogs are OK for breakfast (I lost that battle), kids and fish aren't a good combo, and there should never be any sugar allowed in my house again. Oh.. and I miss Scott and all his help!

Wednesday, October 7, 2009

The rewards of being a mom

Tonight was a special night for me. Josh let me rock him to sleep. He has never been a cuddly boy and always preferred to be put in his crib from around 4 months on. I am not sure why tonight was so different, but I LOVED it!

And the funny part... you know he is way too accustomed to meds since he chose to suck on this syringe to fall asleep.

And finally... sleeping peacefully. Isn't it cute????

Thursday, October 1, 2009

My Kitchen is over-run!!!!

One day I want my kitchen back. Right now it has become much more than a kitchen, it's a medical room as well. I don't mind sharing my kitchen, but it's not very big. Here is what I hope to get back in the future......

This entire corner! It is taken up by meds, dressing
supplies and feeding accessories, ect.

It's great, isn't it? Believe me, there is alot crammed into
that small space.

Just to give you the whole picture.... this is my entire kitchen. Not alot of counter space since it is a condo and they don't have big kitchens.

I have to keep this part of the counter cleared off or else I would go nuts. I have to have somewhere to put stuff, cook on, and get dinner assembled. It often get's messy since it is the only space on the counter.

Here is the other side of the counter's. Mostly Josh's stuff and then our toaster. I would absolutely LOVE to have more appliances out and easy to access, but where am I going to put them?

Even my sink has some space taken up by dirty bottle nipples, dirty feeding extentsions and syringes. Yippy!!!

And lastly... the front of the cupboards even have stuff on them. I have a list of tons of names that milk, eggs and soy goes under so I can make sure he doesn't get what he can't have.

And it wouldn't be complete without the list of meds and with what feeding I need to give them at. I have to keep myself somewhat organized since it is so easy to forget.
So that is my kitchen. I dream of the day that I will have the entire counter free to put what I want on it. I might even get more creative in my baking if I didn't have to haul out my mixer from the basement everytime I need to use it. LOL!