4 for 4!!

We had a dentist appointment today for all four boys. I am proud to say that all four boys are still cavity free! I don't know where they get their teeth, its definitely not from me or daddy, we both have horrible teeth. The mailman maybe! It doesn't matter to me, as long as I don't have to pay to get cavities filled, I don't care!
Jaxson does have some more teeth coming in. Because he's never eaten by mouth, his teeth come in very slow. Right now my 4 year old has his 4 front teeth, and his 4 back molars, that's it. But he said he could feel both of his eye teeth, so maybe more are coming. I think we have a new night nurse coming tonight. It will be weird, since the guy never came out and oriented, he doesn't even know Jax. We'll see how it goes.
I had a bit of a flashback and horrible realization today. I was watching celebrity rehab (because Dr. Drew is so very fine) and they were talking about methadone. How some people get addicted to the methadone that is supposed to be weaning them off their drugs. It made me think of Jax, and the fact that he was an addict at one time. Of course not on illegal drugs, and not of his own doing, but its so sad to think of my infant addicted. He was on fentenal and versed for almost 4 months straight, so he had severe withdrawals. He came home on a crazy drug schedule. Methadone and ativan weans. Alternating between the two every two hours, and every other day lowering one of the meds doses a little, to get him off. It was a horrific schedule, one were my notebook became my best friend.

So sad what our brave hero's go through!!

Power outage

Our power went out this morning about 7:00. We were sound asleep and heard a strange beeping that wasn't a typical beep. It was his concentrator. Then his monitor went off because his sats started to drop. It wasn't as big of a catastrophy as I thought it would be, although it does remind us that we need to buy a generator in case our power is out for a long period of time. We have a child that uses 5 outlets at night. But his feeding pump, monitor, and suction all have battery life so they kept going. but we had to take his humidifier off and put the nose on a portable tank. So crisis averted this time. Whew!!

I'm so excited that our adoption paperwork is moving forward. Background check is being run as we speak! So again, if you know how to set up a raffle on your blog, or have something to contribute to the raffle, please email me at laceyrugg@hotmail.com.

Now for some cute pics of the little man. He wasn't cooperating very well last night, and was giving us some pretty sour faces! Also I noticed a few weeks ago, his left eye is a little more droopy than his right. Its really noticable in these pics. I need to take him to the eye doctor anyway, we'll definitely have this checked out.

A little better

Well I didn't get as much sleep as I'd hoped, but it was definitely a better night. I took two melatonin, and still didn't fall asleep until after midnight. At least when I did hear Jax, I didn't fly out of bed forgetting a nurse was there. I'm thinking I may need to take a sleep aid, I just don't know what to take thats not addicting.

I was thinking of have some raffles to raise money for our adoption. I'm not going to do a whole adoption blog, I just don't have time for that. Plus I don't have a face to raise money for like Reeces Rainbow. But I do think fundraising is a great idea to help fund adoptions. If anyone has anything to donate to raffle, that would be great. I think I'm also going to raffle some blankets, they are always a favorite. Also, as I said before I'm a complete computer nerd, so anyone who knows how to post something at the top that will stay there for a while, please let me know also!

Speaking of blankies, here are a couple of rememberance blankies. I'm posting these because I have faces to put behind names. This first blankie is for a friend of mine that I've never met in person. Her little boy had DS, and he passed away from the same clotting disorder that Jax has. We've talked many times, and she always has great advice for me.

This sweet baby's story just breaks my heart. Jayce had multiple heart defects, and spent his short life never off the ventilator. But he touched so many lives while he was here!

Hoping for a good nights sleep...finally!

I love my new blog, thanks to the polka dot pig! I don't do my own blogs, I'm such a computer nerd, if I even tried I would end up deleting all my stuff. So I leave it to the experts.

Guess who slept in their clothes last night?

Yup, a naughty, not-sleeping little boy. He fell asleep on the floor and I wasn't going to risk waking him up. Tonight we have our first night with a nurse. And it couldn't have come at a better time. This is how my night last night went.

I went to bed around 10:30. I layed in bed and stared at the ceiling, always thinking I was hearing Jax, until 12:30. Then I did hear Jax, I was up with him until 2:00.(one nice thing about having a chair in his room now, I can sit down while I'm waiting for him to go back to sleep!) I finally went to sleep for the first time that night at 2:00. 4:00 he was up again, and I was back up with him, I don't even remember when I went back to bed that time. Daddy got up for work around 5:45. Thats been a typical night for me for the last month.

I'm just hoping tonight I can turn off my mommy beacon and just sleep.

I'll let you know how it goes in the morning.

Night, night!!

medical mumbo-jumbo

We had a pulmonology appointment today. Have I said how much I love her? Every time we see her she spends an hour with us, talking about everything under the sun with him.
It was a trach follow-up, but also I wanted to talk to her about how he still doesn't sleep at night. I've caught him desatting twice while sound asleep. Some people say he probably had a mucous plug, but he was not junky, and he never even stirs. It was just like before the trach. So here comes the medical jargon..
We talked a little about lung disease. I wanted her take on what causes lung disease. I had heard that being intubated and on the vent causes lung disease. Well she said that just being on the vent doesn't cause lung disease, its the pressure the vent is pushing. So if they are really sick and have a really high peep, thats causing more damage. And he's definitely had some extremely high pressure support on the vent. Looking back, there was a couple of times were they probably should have put him on the oscillator just to save lung tissue. There was twice were he was at a peep of 15, which is the highest they will do on the conventional vent. Extubation is usually around 5, and they consider 8 and 9 to be a lot of support. So 15 was basically trying to shove air into his lungs, not good.
Also she said the DS kids in general have smaller, weaker lungs. And of course refluxing and aspirating does a lot of damage. And then you have pulmonary hypertension, that does damage. So there are a lot of reasons why Jaxson's lungs in particular are toast! She said he probably will never be able to come off the high doses of diuretics he still requires, that his sick lungs sluff off a lot of fluid.
She does a lot of shaking her head when she meets with us. Not in a bad way, just amazed at how complicated he is. When looking at him, you have to think of everything before you make decisions. He has pleural effusions on both lungs. Its chylus fluid, which he has a history of having out of the blue. But chylus fluid is fatty fluid, and he is on an all fat diet for his seizures, so it makes the effusions worse, but we can't do anything about it because he needs the diet. How this kids lungs even work is beyond me!
She wants another sleep study, yipee! (Sense the sarcasm?)
She thinks he needs the vent at night. I knew that was the direction we were headed. But if it will help the kid sleep at night then bring it on. She thinks with his already sick lungs and severe hypotonia, that he just needs a little extra help when he sleeps. She's thinking c-pap settings on the vent will give him the extra push he needs to oxygenate well.
So we will have the sleep study with a full EEG because of his seizures and go from there.

January means deductibles and out of pocket maxes :(

Jaxson getting in a serious workout!!

I'm giving the blog a makeover so things might look a little screwy for a while. I love my Mickey background, but we've had it a year and it will be nice to lighten it up a little. The black is just too dark.

I've been in a great mood since New Years, excited to start some new things and hoping for a great year. Then I realized that with the new year means starting over with deductibles and reaching our out of pocket.

Ugh crap.....

I hate this time of year. Yeah Jax hits his out of pocket in Febuary, but I will be getting tons of different bills from a million different places until that happens. And spending a lot more money. We joke that if we didn't have Jax our mailman would be bored. Every day we get at least 2 things from our insurance for Jax (a waste of paper in my opinion, to tell me what was charged but that I don't need to pay it) I really shouldn't complain, we are lucky. We have great insurance, and they cover just about anything. Plus our lifetime max is 2.5 million instead of the typical 1 million. Meaning we are saved from losing insurance for at least a little while longer. He passed the 1 million mark last year. So now the medical bill paying begins again!

Double Ugh!!

I also talked to our resource nurse, who knows everything available to special needs kids here in Utah, and she had no great plan to continue nursing care. A lot of people have mentioned the Katie Beckert waiver, but no one in Utah knows what that is, so I don't think Utah has it. Like I said before he is on a waiting list for a waiver for technology dependant kids. Meaning they have to be trached or on c-pap, but it will be about a year before we get it. Which means the end of this month we lose our nursing care! I can appeal it with my insurance, but I won't get coverage while appealing. I can talk to the nursing company and work out a deal to pay them less, but it would still be out of my pocket and expensive. Now I know I won't die if I don't have nursing care, I've done it for 4 years already. But a trach is a lot more work. I haven't had a full nights sleep since the trach. And now that i'm getting a night nurse, I will lose it at the end of the month!

Triple Ugh!!

Jaxson's new room

Jaxson love's those cheaker's kissed!!

Today we finally tackled rearranging Jax room. Putting his new crib and new chair in there, because I'm sooo ready for some night help! As we started moving things around though, what I had envisioned in my head wasn't going to work. So we did a lot of moving and changing. The concensus....Jax does indeed need the master bedroom! Now that we have two IV poles to add to everything else, there just is not enough room. His stander is now shoved in the corner of our front room because it just doesn't fit. And one of his rubbermaid shelves with supplies in it is stuck in his closet to save space and make his room look as un-medical like as possible (which I think we accomplished nicely) The colorful shelves hide medical supplies, although its getting to small. I'm thinking about selling it and getting a bigger one that has nine shelves.

One of his IV poles is not in this picture because it has his feeding pump on it so it moves to wherever he is at the time, at night it will go in front of his humidifier IV pole.

The other side of his room.

With tackling Jaxson's room taking all day, our Christmas stuff has yet to come down. So this will be a busy week. Tomorrow we start the background check for our homestudy, and we'll have to go get fingerprinted this week. Then I need to start making sure my house is childproof for the homestudy.

Busy, busy, busy!