Sleep, who needs sleep?

This is were I finally put Jax to sleep after a bout of his screaming fit in the middle of the night that wouldn't stop.

I would sure like to know what it is. We checked his ears, throat and all that stuff. It could be his tummy because he has chronic constipation but his new formula is helping that. I would really like to know if it is clots in his brain giving him headaches, but we have to wait until Monday to find that out.

I always try to get him back to sleep in his bed because moving him to my bed is not easy with feeds running and his monitor hooked up. But I finally gave in after fighting him in my bed for an hour we moved to the bathroom floor in the swing. Worked like a charm. He is still asleep right now at 9:30.

If only I could sleep till 9:30 :)

Oh by the way, the bolus feeds were a success. We now don't have to carry the backpack around 24/7.( Just 4 times a day and all night. Ha Ha)

blood clots and ultra sounds

I found out today that his TEE, ultra sound and hearing test probably won't be done until next Monday. Being holidays last week and this week, trying to coordinate three different clinics and getting an OR room is taking time. But I took him in to get weighed today because he has been puffy. And he was 19 lbs. Which normally we would be rejoicing. He has never been up to 19 lbs, but because he's retaining fluid it just means that there is more fluid in there. And the last couple of days he has had these screaming fits, which he never does. My ped. called the hemo doc on call and they want to see him tommorow. I guess they think that he has more clots in his subclavian and its giving him headaches. It really sucks when they can't tell you whats wrong. They are going to do another ultra sound of his neck and look for clots. Hopefully they don't admit him and want more. But I do have a feeling they are going to want to hurry up with the TEE, so it will probably be before next Monday.

Oh and we are going to try a bolus feed in about 20 minutes. He has been on continuous feeds since October so this is a trial to see if his tummy can take it. I will let you now if it is a sucess or if it all comes blowing up past his nisson.

Fingers crossed !!!

Still don't know...

We had a fantastic Christmas, except for the 2 feet of snow we got. We got stuck in our own driveway. Carter got his dirt bike he wanted so bad. And he has been riding in the unfinished part of the basement nonstop.

Jax got a playmat to lay under, it has lights and music to hopefully encourage him to reach for things.

Christmas really knocked Jax out. To much excitment and noise.


We didn't go anywhere on the 26th because we were pretty much snowed in. So we let the boys play with their new toys, and we've been so busy I haven't been putting Jax in his stander as much as I should, his hips are going to start getting loose. So we took advantage of a quiet day to put him in for a while.

We still don't know when his procedures are going to happen. I called Christmas eve and the guy said he was still working on coordinating all the different people. So it should be next week sometime, just keep your fingers crossed that its in and out, same day. Have a great day.

More procedures, sigh

Remember how Jax had those purple spots on his feet that our ped thought were embolisms and cardiology shrugged it off? Well his hemo (blood) doctor saw him yesterday and he thinks that they are too. So he wants the transesophageal echo. The question was how urgent is it? Well he has had these spots for about ten days so they are not life threatening right now. So we are going in between Christmas and new years to have the TEE, an ultra sound of his stomach and groin to check for clots, and also a hearing test he needs that they have to do under sedation. We do everything at once because he can't be sedated, and once he is intubated he likes to stay on for a while. So pray when we go in that its same day, and we don't have to stay in the PICU intubated. One good thing is he still has his picc, we were going to pull it but decided to wait when the purple spots appeared. Its behind his knee, called a popliteal, we've never seen it, but he's had so many in his arms that the veins are shot.

We are excited for Christmas and we hope all of you have a great day too. Merry Christmas to everyone!!

Busy Christmas time

You know everyone is busy with Christmas when there are no new blogs for days. Yep its crazy here too. Friday night the boys made their gingerbread houses, Jax of course watched from his seat.

Saturday morning we had the Utah down syndrome foundations party, we haven't gone to many downs functions in the last two years because after Jax brain injury he got so far behind even downs kids that I was sick of answers questions about why my 2 year old couldn't even hold his head up yet. But we decided for Jax and the other boys we need to start remembering who Jax is and what he has. Of course we forgot our camera so we have no pictures from that party with santa.

Saturday night we had our family Christmas party. So here are everyones pics with Santa.( except Carter because he jumped up there so fast we couldn't get his pic)

Jax and grandma at the party.

Studying sleep

We went Sunday night to have a sleep study for Jax. This was actually his first sleep study. He has always been on oxygen and he's not a good sleeper (probably for a reason) but other stuff has always taken precidence over a sleep study. But we finally got to it. Man it sucked big time. First of all they did a full eeg on him because he has siezures. So he didn't just have a couple of probes on his head, he had ALL of them. And the pulse ox is not in his room its on the computer were they watch him from, and that drove me nuts that I couldn't see what his sats were. Because they took him of oxygen at first because they need to see what he sats without it, and I was going crazy not being able to see the moniter. Plus I can't sleep next to him, he wakes up every couple of minutes, which means I didn't sleep at all. I don't know the results yet, I'm waiting for the doctor to call, hopefully we don't need tonsils out or even worse the dreaded c-pap. I will just turn up his O's if I need to, we know people who do that, right Julie?

We hate cardiologists !!!

Check out mondos bruise from running into a wire that holds trees up. He ran full steam into it last Friday night when we went to the Festival of Trees.

Now for our frustrating story. I took Jax into his doc because he had purple spots on his feet. She was quite concerned because he is on blood thinners. So she ordered a bunch of labs and blood cultures from his picc, then she told me to go home and wait because she was going to call his cardiologist.

So she calls me later and says that cards wants to wait and see if he gets sicker, brilliant, lets wait until he is back on the vent and is to sick to fix. Its happened before, we sat on the vent for 3 months waiting for surgery. And they flat out lied to our faces.

Thank god we have a fantastic pediatrician who will do what it takes to get her answers. She thought it was either his heart throwing clots, or a reaction to the lovenox. So we got to drive up to pcmc this morning in a blizzard to get an echo. Right now the echo looks ok. But to really see a clot they have to do a transesophageal echo, and thats a lot more work. We'll see how it goes and we are just waiting for some more of the labs to come back.

I'm not willing to risk this beautiful baby's health by waiting for the dumb cardiologists.

Thankful for what I have!

I had to take Jax to the hemo doc yesterday for his clot. Its in the oncology clinic, and there was this little girl around eight or nine. She had her cute beanie on, but she was white as a ghost and she had big dark circles under her eyes. She was also very underweight, (Jax has a lot of room to talk, the 17 lb 3 year old). She had a little garbage can next to her in case she got sick, and she was holding her moms hand. She looked so miserable, I couldn't take my eyes off her, although I was probably staring. It seems so dumb because Jax is still so fragile and it wouldn't take much to take him from this world. But when he is in the hospital he is usually so content. And if he is really sick then he is so sedated he doesn't know whats going on around him. This mom had to watch her little get so sick from the darn chemo, and she looked spent to. It just made me so sad, this little girl left a permanent mark on my heart. I just hope she feels better for Christmas.

Busy, busy

Besides the normal hustle and bustle of Christmas, we have lots of appointments this month. Tommorow we have an ultrasound to see if the clot is still there. Then up to the hemo doc to read the results and see what he wants to do with the lovenox. On Sunday night we have a sleep study, I'm not looking forward to that, that means I don't get any sleep. I just hope they don't want to do tonsils and adnoids, they may do it anyway, but he is doing ok at night because he is on O2 anyway, his vocal cords look good ( I'm so glad they didn't trach him when they wanted to) We'll see, I know a lot of chronic kids that didn't do great with tonsils and adnoids, even though it is an easy surgery.

Here is a video of Jax and his babbling that he is doing a lot more. He is having more siezures, but the funny thing is that when he is not siezing he is more alert and he almost smiles.

Christmas pics

We went to grandmas house to use her backyard for christmas pics of the boys for our christmas cards this year.

Jax in his GQ outfit.

Jax was sitting on Raymonds lap on his sore leg and he screamed in pain and Jax just gave us a great pucker face.

Flash dance leggings

I finally got some baby legs for Jax, I finally got over to Gardner village to get some, so here's flashdance boy. He gets so cold in the winter, since his brain injury he doesn't control his temp at all. Last winter when his rectal temp was 95.4 the doctors office freaked out until we realized thats just him. In the summer I can't take him out on a hot day for very long because he will overheat.

So I am trying to get some cute pics of my baby and right when I took it his arms flailed out and he had a siezure. Nice, so I got a great picture of him siezing. Aren't brain injurys great?

Cute pics

Daddy and Mondo at the Utah, Byu game, go Utes!!

Carters hiding place in hide and seek, Clever!

Tanners beautiful smile that we don't see often with his autism.

Fun in the tub!!



Nothing on my face, savor the moment, it doesn't happen often.

Today Jax had his follow up appointment with hemo for his blood clot. They are probably going to keep him on the lovenox for at least 6 months, depending on what todays labs show. They think he has a clotting disorder which scares the @#*& out of me because then I think of pulmonary embolisms and brain bleeds that can kill without you even knowing their there. But theres evidence that he's had clots before and when we think back we remember when he had a heart cath he got a clot and was on heparin, and also an art line that caused a clot. I hate having to give him shots twice a day for 6 months, luckily he doesn't even skwirm. The needle is an insulin needle so he barely flinches, Yeah.

He is still getting over his cold. I called the doc today to see if they still wanted me to bring him because all the cancer kids go to that clinic, they said just get a mask from the front desk. It was fun trying to keep that baby on. And it was quite embarassing when my baby is hacking his lungs out and all these moms with imunocompromised kids stare at me like I'm a lunatic. We still need to suck him out quite a bit but its getting better.

We are also going to try to keep Tanner off anxiety meds if we can, we are going to try changing teachers and doing a rewards system, but my doc is ready to hand out the meds with a phone call if this doesn't work.

Lacey and Jax

Rhino boy

So Jax has been congested and sick since Wednsday. We found out today that is was the Rhino virus, whew, we can handle that one. It tends to be one of the lesser of the evils, I think we can make it through without the hospital stay, his oxygen need is up but not enough that I can't watch him at home, moms are better docs anyway.
Thanksgiving was good, today we are putting our tree up. I love the holidays, we love to drive around at night and just look at peoples xmas lights. Tanner my autistic one LOVES xmas lights. Next Sat. the 6th is Jaxsons b-day party. its an open house so just come and have a piece of cake. No presents please, its from 4 to 6 Call me at 792-4661 to get our address for those of you we just met and didn't get invitations to, we would love to meet our new friends.

Lost Friends

So I went to change my background to a cute Christmas one and it deleted all my friends on my friends list. So I put some back on but if yours is not on there or you want me to add you then send a comment and tell me your address. I'm still new with blogspot so if you know why it did that fill me in on that too. Thanks so much, Lacey and Jax

ER again !!!

We were back in the ER last night for high calcium again. The nurse called and I could tell by her voice that it was bad. She said head back up. I wanted to give him fluid at home but high calcium can cause heart arrithmias and thats not good on a heart kid. So when we got there we told them we were not staying, so they gave him a bolus and rechecked it and it was down a little so they let us go. Yahh, we have been in the hospital 3 times in the last two and a half months and in the ER three times, enough is enough. His crit is also going down so he will probably need a transfusion pretty soon, I don't know if they will admit him for that or just do it in the RTU and let us go, he still has his picc so we can do stuff so easy, I love having it I want to keep it forever. At least we are home for Thanksgiving, thats all that matters.

Quick update

We are really busy right now like everyone else is. We are having Thanksgiving at our house this year because we have the most space. Its ok with me because I love having people over. Rays aunt from California is going to be here too and we are super excited to see her.
We are also having a birthday party for Jax this year, we've never had one yet because he doesn't know and he can't eat birthday cake. But we decided this year its time. We need to celebrate that we made it to our 3rd birthday. Its going to be Dec.6 but I don't know a time yet. It will be an open house so people can come and have cake, and no presents needed. My phone number is 801-792-4661 you can call me for my address if you want to come.
Jax is doing good, he is finally gaining a little weight, we are up to 17.13 yeah. He is still on continuous feed which is good and bad. Its good because I don't have to remember to feed him but its a pain because the bag goes with us everywhere and its one more thing to carry. He still has his picc because they are drawing labs every couple of days, I love having it, I wish I could keep it forever. He is going in for a sleep study in acouple of weeks, and he also needs the ABR hearing test done again because he continues to fail it, the've talked about hearing aids but we will wait to see what the ABR says. I don't know when we will do it because no one will sedate him he has to be put under general and to intubate him just for a hearing test may not be worth it because he likes to "suck the plastic" as we call it. Lots of appointments but nothing more than usual, we are used to it
Oh while I'm here, If anyone has any ideas for my autistic son and how to get him to go to school I really need advice, I'm ready to pull my hair out with him, every day it is a fight to go to school. His resource teacher asked about anxiety meds might help, I hate to medicate him because so far we have'nt needed to, but if it helps him I'm willing to try it. I will ask my pediatrician about it today. We hope everyone has a great Thanksgiving, we know we have a lot to be thankful for.

Jax and his BFF

Jaxsons BFF Ariana came over on his birthday to play. She is so funny she loves him and she loves to grab him and give him kisses, it was a fun playdate.

Happy birthday!!

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Last day of two

Tommorow my baby won't be a baby anymore (well size wise yes). He will be the big three. I can't believe we've made it this far. How many times did we wonder how much time we had left.



This year we will keep on working on that head control and that beautiful smile that we miss so much. We will try to stay healthy this winter and we will start preschool from home because we are to fragile to go to school. (Plus he is a baby, how can he go to school)



Happy birthday baby and we look forward to many more with you!!!

Big Boy

We went to see the ENT today. He said there was no fluid in his ears so he sent us upstairs to do the hearing test again, and again he failed. So now they are talking about hearing aids. But they want to do the avr test again (the one they have to put him under for) to see how bad his ears are. He also wants to get a sleep study to see how he does when he is asleep. We've actually never had a sleep study before. Its been talked about but other more pressing issues usually have us more worried.

But my big boy is holding his head up so good. He also does what I would call a smile, its the closest thing since PCMC took his smile away two years ago. I included a video of him holding up his head. Its kind of dark, and ignore the background noise, and the grinding of his teeth. I'm just glad I figured out how to get it on here. And at the very end you will see his version of a smile. Lots of love from Jax

Refreshed...maybe

So me and my husband went to a hotel on Saturday for our anniversary. No kids, yeah. We went to dinner, a movie, and did a little x-mas shopping. I didn't wake up on Sunday until 10:00, wow that never happens. So this morning I woke up feeling refreshed and ready to tackle the week. Then I had a billion stores to go to. Lab draws for Jax, and tommorow a doctors appointment at PCMC. I'm feeling tired already.

Oh well, it was a much needed vacation and I can't wait until next year.

Calcium Craze

So I get a phone call from my pediatricians nurse on Wednsday and she said the labs we had just drawn from him showed that his calcium was 14.6 which is dangerously high. So we had to high tail it to the ER. Of course they admitted him and started fluids to flush the calcium out. But with him being a heart kid they have to watch how much fluid they give him to not stress out his heart. Its a hard balance to keep.






Your probably wondering why his calcium was so high. Well when he came home two weeks ago he came home on hefty doses of calcium and potasium because he was pooping so much. So we've been doing labs to make sure it didn't do that but it happened anyway.

So we were back in the hospital again, its neverending, but his calcium came down and we came home today after only two nights. We can handle that. Plus our anniversary is tommorrow and we had planned to go to a hotel. Plans still on!!

To poop or not to poop

Well he is back to not tolerating feeds and not pooping since we changed his formula back. So now we are going back to the formula he came home on and watch for pooping to start again. Hopefully not to much. Other than that we are just getting frequent labs from his picc and weighing him weekly because he has lost so much.

We are excited for the holidays this year because we are finally in a spot were we can give our kids a good Christmas.

Nov. update

So we just started this blog so if you don't know Jax history instead of me recapping everything check out his myspace. Myspace.com/jaxsonsfight.
He came home from the hospital the day before halloween. They didn't want to let him go. They didn't think he was ready. It was more me saying I'm leaving before you give him something else. They sent him home with his picc so they can draw frequent labs because he has no venous access. He has lost a pound and if he doesn't come up soon we will beback in the hospital. So that is what we are working on now. He also gets shots twice a day of bloodthinners because they found a huge clot when they were trying to put a picc in. Now they are checking him for a clotting disorder. Not like he needs anything else. So pray for pounds or even ounces right now.