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