Sunday, January 31, 2010

PICU update

I was able to get a good nights sleep last night, yeah! No phone calls in the middle of the night! When I got there he was a little agitated. I held him in the rocker, and I noticed that his color wasn't beautiful, and his sats were in the 80's on 75% oxygen. So I mentioned it to the nurse and she had respiratory come up and bag and suction him, and called the resident. The bag and suction brought his sats up a touch, but not a lot. The chief resident also came up. Both said he needed PICU. The PICU team said they weren't going to come up and look at him, just to bring him down. They put him on the ventilator, and he immediately began to breath easier. They've stopped feeds and started fluids, which worries me a little because when he's on fluids he always retains it in his lungs, so it may not help the breathing much. I left soon after he was settled because we had motorcross tickets and I wasn't going to make the other boys suffer. When I got back she told me he had an episode where he dropped his sats into the 40's and she had to bag him for 4 to 5 minutes to get him back up. And he was really agitated so now he's sedated. Hopefully he can stay where he is. If he starts needing other lines and things then it may get nasty!

Oh and some people wanted my email, its
Oh, oh, also a couple of people asked about going in a firetruck instead of an ambulance. Our fire department close to us has a transport firetruck. Its longer and has a bed in it. Jax has been in it a couple of times!


Yes we are heading to PICU, I'll update later. He is requiring to much support and needs to be on the ventilator. Blood cultures came back positive today also so vanco has been started for that.

Saturday, January 30, 2010

Sorry sorry, I know I'm late!

I'm so sorry I've taken so long to update, I've spent the day unshowered in my jammies in the ER!

Me and Jax took a ride in a firetruck this morning. With lights and sirens even this time! It was really cool! (Yes I have a morbid sense of excitement) I was unable to keep his sats up last night on maximum support I have at home, so in we went. They'll be starting him on antibiotics because they think a little pneumonia is in there too. He is on the floor right now, but they'll be watching him extremely closely tonight because they too think we are going to get worse before we get better.
I just got home for the night. We'll see if I last all night. I've never slept away from the hospital when he's been on the floor before! I feel horrible, but I have to sleep tonight, I just have to. The only reason I'm able to leave him is because he is a one to one because of his trach, so I know there's always someone watching him. And I've already threatened the nurse with her life! I know its worse on me then him though, and I'll be calling throughout the night to check on him.

I'll be better at updating, I promise. But for now here's a hard question. Again the attending asked me if he had a DNR (why don't these people look at his binder?) And the subject once again gets brought up. Now yes Jaxson has Down syndrome and a host of medical problems that come with that. But he also has problems not caused by the Down syndrome, problems that will take his life much sooner than typical DS people. I know this is something I really need to be specific on. If nothing is on paper, and we are not there, then they do a full code. If his hearts stops and he requires CPR, his brain won't survive another hit, and he would be a total vegetable. But how do I decide exactly what to do and not do? How many minutes of CPR before we stop, or any CPR at all. Do any parents of extremely fragile kids have paperwork in place? And some advice on how to do it would be greatly appreciated!

Friday, January 29, 2010

Morning update

Last night was very long and restless, but I guess thats not new from the last few days. He got up to 5 liters of oxygen, which is as high as our concentrator goes. And that only kept him in the high 80's. I turned up the air too just to see if higher flow would help. This morning he's back down to between 1 and 2 liters. We head back in to our ped today to check a gas, and other things.
I'm not quite sure when to head to the hospital. This is our first illness with the trach. I know I can't transport him to the hospital on 5 liters, I have nothing that will go that high. Although our local fire department knows him quite well, and I know they'd love to help us out! And heck, they haven't seen this house, they might want to check it out!
Thank you dear friends for your prayers and kind words, I feel like we are wrapped in a giant hug! (man was that a cheesy line or what?!)

Thursday, January 28, 2010

Hold on for a scary roller coaster ride!

I noticed today that Jax seemed to be a little worse. I was beginning to wonder if indeed he has caught something. The chest x-ray was read pneumonia, but like I said he probably aspirated when he vomited. But my ped called me tonight from home. That's never a good sign! Jaxson has metapneumo virus, which is a sister virus to RSV. We have one sick puppy on our hands, and we are in the beginning stages of it all.

I'm already starting to see his systems shutting down. He's not digesting his food, he's very pale and has nice purple eyes. My ped wants me to watch him closely to make sure he doesn't get shocky. Which would be a nice grey color. She also reminded me with his severe hypotonia he may not increase his respiratory rate, it may just shut down altogether. He's not fully asleep in these pics, just exhausted. Which is whats scaring me already. He has already worn himself out from the coughing constantly, which leaves no reserve for the respiratory crap that's to come. We will probably be heading in for a blood gas tomorrow to try and catch him before he totally poops out on us.

Please pray for my fragile man tonight! This could be one heck of a roller coaster ride. My ped asked me on the phone if he is still a full code, and if we had filled out the paperwork for what our wishes are, because she will be out of town all next week. And although I wonder why they keep asking me this, I have to remember that it's an insurance policy. The nice thing about the trach is we can avoid traumatic intubations. But once we are vented we get lines, sepsis, and other nasty things!

crossing T's and dotting I's

I wanted to post a couple of videos of Jax coughing spells so you can see them, but the dang computer won't let me! And I don't have the patience to fight with it today. So I'd thought I'd post these cute pics from last week. Nurse Brandon doing his own version of therapy! Hey whatever works the muscles right?
Yesterday we went to our ped. She just wanted to make sure that Jax isn't getting something viral with all this coughing. He did spike a temp yesterday of 101.7, I gave tylenol, and 45 mins later it was actually higher at 102. But he was hacking that whole time, and he really can work himself into a pretty high temp. But better be safe than sorry, expecially because our ped will be out of town all next week. We did a chest x-ray, VRP, and checked him out head to toe. The chest x-ray wasn't too bad. There was a little more yuckiness around the area's of lung disease that are already there, but nothing like when he gets sick. Plus he vomited a couple of times during the coughing fits (so much for a nissen!) so he probably aspirated a little. His right ear had fluid, but his tube is out, so that would explain that. She said she could hear a bit of a wheeze, so why in the heck aren't nebs working? Expecially with our family history of asthma, its crazy! We'll see what the VRP shows, I'm thinking nothing. If it does show nothing then we call ENT and get another look at his airway.
Last night was a little better. He coughed nonstop from 10 till 12, and finally conked out. Then he slept till 4, which means I got about 4 hours of sleep in a row! Wahoo!
He was up for about an hour, but the coughing wasn't as bad as its been, then he went back to sleep and he's still asleep now at 9am. Hopefully the steriods are kicking in finally and we are at the end of this coughing episode. Oh and we also changed out his trach last night, wondering if for some reason that was causing it. I don't know why I didn't do that before! I just want to know what causes these severe coughing episodes, because it happens every few weeks.
Oh and just so you know, the nurse from Monday night is not coming back! I don't need the hastle!

Wednesday, January 27, 2010

Trach resentment!

Look at what a certain boy gets to do while I get meds and feeds ready, after keeping me up all night AGAIN!

Friends, I think I'm starting to hate the trach. I don't know if this is something every parent goes through and I'm just going through it later because I had taken care of trachs before Jax. So I knew what we were getting into. And after he got the trach, his lungs immediately looked better, and he had a few nights were he slept all night! So we thought the trach was our dream come true..

Errgghhh, wrong!!

I don't think I've gotten a great nights sleep since he was trached in October. And after last night being my third night in a row of NO sleep, my sanity string has broken!

Yesterday, after my long night with my worthless nurse, I had to go to the boys school first thing in the morning to see Carter get an award. Since Jax is doing this hacking cough thing the last 3 days I was not looking forward to taking him. I didn't sit down with the other parents, I had to suck Jax out a few times, and lets just say the suction machine is about as quiet as a Mac truck driving by! Luckily the lady walked by and put Carter first on the list so I could see him and then get the heck out of dodge with my hacking baby!

And Jax slept most of the day yesterday. He would wake up, cough his brains out for about an hour, and then go back to sleep, exhausted! It really does show how little strength he still has, it just wears him right out. So last night before bed I thought I would give the duoneb another try, just for kicks and giggles. So I gave it to him about 10, and put him in bed. He actually did not cough! And fell right to sleep. I couldn't believe that it worked, either that or the prednisone is starting to work. Then he woke up at 1am, but still didn't have the hacking cough! I was practically singing. But then he woke up at 3am with the hacking cough! I gave him another neb, but this time it did nothing. He coughed for the rest of the morning. I finally fell asleep around 6:30, and woke up late to get the boys up for school. I'm really going to try and lay down, but finding the time is hard.

Did I mention that I HATE the trach right now? And its probably a good thing you only know me through the computer, because today I'm quite the Grouch!

Tuesday, January 26, 2010

Trach advice please!

One great thing about blogs is not only meeting new friends and being a big support group, but a place to get advice from people who have been in your shoes.
I need advice from trach moms!
Jax coughing is making me crazy! Sunday night he coughed all night long. His airway is red and irritated, and we think thats why he's coughing. So his pulmo wrote for flovent. I thought that was a weird inhaler to write for, since my asthma kids are on that, and I know of so many other nebs and inhalents that trach kids are on. Its not working, so his pulmo wants to try oral steriods for 5 days and see if that works. But I don't really want him on that long term. So what are your trach kids on for inhaled meds? And is there a specific one for irritated airways? I'm losing my mind!
Also we had a new nurse come out last night. She was very nice, but she's one of those paranoid nurses. One that I wouldn't want with me if something bad was to happen. I think she would freak out and I would be the calm one. She woke me at 3am and said he had a fever. So we gave him tylenol, and when I was helping her get it, she was trying to hurry me saying "I really want to get this in him". Seriously, is 30 seconds going to hurt? NO!
And this morning I looked at her notes. 99.9 was how high his temp was. Thats not a fever! I just got through telling her that his body thermometer was broken and that being on the warm humidifier and night kept him quite warm. She obviously didn't listen. I don't think having her here helped me get any more sleep than normal.
Oh the frustrations.
On a good note we got our paperwork to go get our fingerprints today. So we'll be doing that this afternoon! So for all you adoptive parents. How long does it take after your fingerprinted to be finished with the home study? Thats all we are waiting for, and I really want to get it faxed to DCSF this week!

Sunday, January 24, 2010

The sweetest boys ever!

A couple of nights ago Mondo asked me if Jaxson could sleep in his bed with him. I told him that wouldn't work because Mondo's room is downstairs, and I couldn't hear if Jax needed to be suctioned. Also we wouldn't want to drag all of his crap down there.
That night when I got up with Jax about 2am, this is what I saw!

The boys wanted to have a slumber party with Jax, so they slept in his room! Isn't that so cute? I think next time I will take Jax out of his bed and let him sleep on the floor with his brothers!

Why are my crazy brothers in my room?

Friday, January 22, 2010

home study done

A few pics of blankie kids above.
The home study is done! And it wasn't bad at all. She talked to the boys a little first. Just got their likes and dislikes, and what they like to do as a family. Then she got mine and Ray's background pretty much since birth! And how are marriage is. She didn't even look around the house. She said she assumed everything is put up because we have the boys. I'm a little confused though because she said someone from the state will come out and do a better safety check. I said what if we don't adopt from the state, and she said they still will. So I don't know. I'm just glad its done. Now we wait. Our background checks haven't come back yet so she can't fax the home study to DCSF. And DCSF now won't tell me anything more about the baby. Seriously, so the people that told me about her before are wrong! I really hate dealing with DCSF (no offense to anyone who works for them) I know they are super busy, but come on! I just need to keep myself busy until my home study can be faxed to DCSF and they call me about whether they think we are right for the baby. But there is no one else wanting her, and I know they want to get her off their caseload. I just wish they would hurry up!
I know, I just need patience!

Thursday, January 21, 2010

Home study

Jaxson trying out his new babylegs!

My little frog boy!

Tomorrow we are having our home study! So today will be spent running to get my birth certificate, two fire extinquishers, and frantically cleaning the house. To top it off, we got a ton of snow last night, and its still snowing! Oh how I want out of Utah, I'm tired of yucky snow. So my guess is that my nurse will call and say he can't make it through the snow, Ugh, I really need him today!

I know I have no reason to be nervous, but man I am. I had a few minutes of calm in bed last night, thinking that the lady will love us. I don't know how quick it will go after that. I want to get the home study faxed to the case worker now! I want to find out if they will give us this baby girl. Oh the wait is maddening! I can tell you what little I know of the baby, and this is from before Christmas. She was a 24 week preemie, twin. She supposidly doesn't have all of her brain, but she eats by mouth, tracks and prefers certain people, and makes baby babble. Oh and reaches for toys. All this at an adjusted age of 5 weeks! She was 5 months before Christmas, and only weighed 7 lbs. I was also told that her fontanel has already closed so her skull won't grow with her body. But I know that can be surgically fixed. She also has cerebral palsy. I just want to get my hands on her and her medical records. The case workers have no medical background and just don't know what their saying. Hopefully we can meet her next week! So just pray that we stay calm and don't say anything stupid tomorrow!

Also, I talked to my ped about the ok sleep study and the fact that he still wakes up so much. She wants me to take him back to his rehab doctor. She said that sometimes brain injury kids don't sleep great, spasms or other things, and this doctor might have some good things to try. Also I wanted to look into getting his cecostomy out. We didn't know if it would work in the first place, but with the trach and all the air that he swallows, I haven't even used it. And since stool can leak out its always red and irritated. But they just told me it has to be surgically removed. Ugh, I didn't know that. Didn't I say in my New Years resolution that I wanted less surgeries this year? And its only January! We'll make an appointment with the surgeon and discuss what would be best!

Tuesday, January 19, 2010

genetics appointment

I had a genetics appointment today with Jax. We have never been able to talk to genetics after his trisomy 21 diagnosis because Jax was constantly in the hospital. I knew that he had a rare form of trisomy 21, so thats why I wanted the appointment.
It was quite the learning experience for me. Jaxson has robertsonian translocation trisomy 21. That only happens in around 3 percent of all trisomy 21. 95 percent is nondisjunction trisomy 21. Now I'll try not to lose you and explain this. In most translocations, the third 21 chromosome attaches itself to the 14 chromosome. In Jax rare case, his third 21 attached itself to another 21. So in reality, he only has 46 chromosomes, not 47, because they are attached. Isn't that crazy? He has trisomy 21 but has 46 chromosomes! This is also the one trisomy 21 that is inherited. Either me or Ray would have 45 chromosomes. One of our 21 would be attached to 14. It has no affect on us but makes us carriers. But because we have 3 healthy kids, and no history of miscarriages, he thinks we are ok, that Jax defect was a fluke. So once again Jax writes his own medical book. He also said that in his 30-plus years in genetics, he's never seen a down syndrome child with this severe of medical problems live as long as Jax. He said they usually pass away before their second birthday. And he knows we've had a couple of close calls, and calls him a true miracle! I know Jax is a miracle, but to have a genetics doctor tell me he shouldn't be here just blew me away!
Also his pulmo called while I was in the clinic. His sleep study is ok. The only thing is his EEG still looks horrible. So he seizes all night. The bad news about this is that gives us no explanation as to why he wakes up so much at night. And no relief in sight. I'm now wondering if this constant seizure activity is contributing, so thats a whole new avenue we will have to pursue, because so far his seizures have been untreatable. He is on 3 seizure meds and the ketogenic diet. So although I don't see many visible seizures anymore, his brain is still constantly seizing, so in effect its slowly killing the brain.

Monday, January 18, 2010

I'm at it again!

Yep I'm at it again. Yesterday we walked around the mall and got lunch. We walked past a little kiosk that sold the hair bows and tutu's I've been dying for. Of course I had to pick up a couple things!

I love the mix and match bows, how you can clip them on a headband or just put them in their hair. She is going to have tons of these!

You don't understand what this means for me.(Well some do!) I've been wanting a girl for 12 years now, and the fact that it is so close is just killing me! It is a bit overwelming because its like having your first baby all over again because we have nothing girl. But I don't want to go to crazy in case something doesn't work out. But you know that would just devastate me.

We talked to the lady thats doing our home study and she said she can come do it this week. The background check should be coming back soon, it was sent out the week before last. I'm not as nervous about the home study as I was before. She said she doesn't care how clean the house is. Just how we are as a family and a couple and our family dynamics. So all you moms that have adopted, any advice would be greatly appreciated. Or a little insight as to what they do when they come out to your house.

If all goes well, our new little sister will be here in a couple of weeks! Then she would be coming with us on our first California trip in March! I can tell Ray is excited too because he said we HAVE to get her a princess dress from Disneyland, and that we need to do the princess character breakfast!

I don't know how adopting through the foster system works either. I don't know if its more involved. Again, any advice is greatly appreciated!

Sunday, January 17, 2010

Fun video

Happy Sunday! You have to watch this video. Its so cool! I have liked the Black Eyed Peas for a long time, but I really love this song. Its my ring tone. Its called I Got a Feeling, and they just talk about that they know its going to be a good day, and to live life to the fullest. Definitely our motto! But this video is just cool, watch closely!!

Friday, January 15, 2010

Sleep Study done!

Sleep study done, and we are both relatively unscathed. I think I've got a cold. I've had the beginning stages for a few days now, so I'm guessing my flu shot is preventing it from getting horrible. Or its total lack of sleep from a another sleepless night in the hospital. Who knows!
I'm very interested to find out the results, and what, if anything, will be changing at home. We have a couple of trips planned, one for March. And I'm anxious to know what equipment we are going to have to drag along. I'm now thinking we should have bought a trailer instead of a on the hood cargo carrier! There's no way we will stop traveling. Its what we love to do, and Jax loves it too!
Some other big news. I got a phone call from DCSF yesterday. They haven't found a home for our baby girl! Not big news since I knew no one would take this sweet baby. She said as soon as our homestudy is done to fax it to her! So we may get our original baby after all! Her sister has found a family, and hopefully its a family that will keep in contact with us! We will be getting our homestudy done next week, so I'll be sure to keep you updated on the latest baby news!

Thursday, January 14, 2010

For your viewing pleasure!

Last night Jaxson was trying so hard to roll over, so we grabbed the video camera. Remember to pause the music and just ignore the squealing moron in the background!

As you can see he still can't make it all the way over. Someday maybe! While I was downloading this video I found another video that we did right before the trach. I wanted to get his sweet voice on tape before we trached him. Watching it was the first time I really broke down since he was trached. Oh how I miss that sweet voice!

We have our sleep study tonight. I'm anxious to get the results of that, to see if we are adding even more equipment to our load!

Tuesday, January 12, 2010

I'm in big, big trouble!!

Last night I was on, because you know I love those for Jax, and I was looking at some cute girl babylegs. I wanted to buy some so bad, but I'd made a pact with myself. No buying girl stuff before you have the girl!! You will just jinx yourself.
I needed some reassurance so I called Ray in. He said, go ahead, buy some. Great, thanks for the help honey.
Needless to say I bought a pair of girl babylegs!!

But after I did that I soon found myself on Etsy, looking at everything girl.
From hairbows and tutu's,

to baby beanies.

Yeah, I'm in big, big trouble!

I really hope I didn't just jinx myself, I really, really want that girl!!

Monday, January 11, 2010

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!!

Sunday, January 10, 2010

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

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.

Friday, January 8, 2010

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!

Thursday, January 7, 2010

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!!

Wednesday, January 6, 2010

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.

Tuesday, January 5, 2010

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!!

Sunday, January 3, 2010

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!