Happy Halloween

Happy Halloween everyone!
(I think I will ask for a nicer camera for Christmas! We have daddy's professional grade camera, so I think I don't need a nice one. Well I'm sick of fixing red eye so my kids look like they have cataracts!)




Don't ask what Mondo and Carter are. They are characters from some Japanese comic book!

Halloween parade

Cardiology called, and he wants to double his diuretic through the weekend. We can't go any longer than that without needing to check his electrolytes, which she doesn't want to do now. We have no veins left to draw from, so she wants to wait until we absolutely have too. But we still need that lovenox level. It makes me nervous, as that is a huge diuretic dose for him! His normal dose is high for a child his size, but every time we try to lower it, he has respiratory distress. Of course, in the hospital he has been on diuretic drips. But that is in the controlled hospital environment. Cardiology also said the we could do some imaging to look for clots. My ped doesn't like the idea of putting him under yet again. An MRI, to me, would not be a big deal. Because of the trach, we don't have to worry about intubating him, which was always the main problem. Plus its not invasive. I would be ok with that. The cath lab, is much more invasive. And every time we enter his veins, we risk that he will clot them off, not good!
I think I will email his hemo doc myself. Maybe he can say what he feels would be best!

Yesterday was the Halloween parade at the boys school. It was really nice because Mondo has late start on Fridays, so he was able to come and help me!
Jax was the hit of the parade! I tell ya the Mickey was a great idea! He was stopping the parade, as teachers and students stopped to look and swoon over him. We had him on our laps, as there was no room for the stroller, and people were going nuts!
Sorry these pics aren't great. I'll get some better ones tonight. I don't have daddy's super nice camera. And trying to catch a moving target is not easy!

The puffy face is back!

Its clear from these pics that Jax face is getting huge again. Look how his trach tie is almost invisible under the puffiness. I started noticing a real difference a few days ago. Yesterday he was up to 24 lbs! His normal is in the 22 range. Thats a huge difference. But the reason I'm worried is because its only in his face, neck, and upper chest. Thats his SVC again. His legs are fine, and his feet are fine. She checked his albumen, because he's had problems with that being low and causing puffiness. But his albumen is just a tad low, not low enough to cause the puffiness. She also wanted to check his level of his lovenox in his blood. If its too low, he could be clotting. They were not able to get that level, they poked him 3 times, and only got enough for the albumen. So we wait for cardiology and hematology to call with their opinions on where to go from here! Yikes!

Jax new jammies of the night.

Buzz Lightyear to the rescue!!


He loves Buzz lightyear. Look at his face on the ride. All smiles, and he was loving the bright lights!
Tons of stimulation!

Jax first Thomas jammies

I realized the other day that I missed Thomas trains! Sounds weird, I know, but I have four boys, so Thomas has been a part of our life for the last 12 years. Well now that Carter is almost 8, Thomas is no longer in our house. I drove under an overpass where a train was going, and I almost, out of habit, screeched, "A train, a train!" That used to be a big deal in our house.
So when I saw some Thomas jammies yesterday, I thought, its about time that Jax has Thomas stuff!
I do have to tuck in the shirt, and pull the pants up for the "old man look" because unless he has an undershirt on, he is a major tube grabber! I mean, this kid won't hold anything in his hand, or reach for anything. But as soon as the clothes come off, he reaches right for that toobie!
Naughty boy!!

Lookin good!

Uh oh

Loosin it


Timber!

Mom, seriously, this is embarrassing!

Facts about Jaxson

Although I've missed all of Down syndrome awareness month, I finally have time to sit down and post about it. I thought I would post all of Jaxson's cares. Many people have asked about his meds and treatments. I know a lot of people post their childrens meds on the sidebar, but I just don't have room for that. I know this blog is a lot about giving and receiving advice from other special needs families. So here are Jax stats!

First a little history, I'll try and keep it brief:

Jaxson was born on Nov. 20, 2005. We didn't know about his having DS or a heart defect until he was born. He was transferred to Primary Childrens Medical Center on his second day of life for increasing oxygen needs, and they needed to see if he had a heart defect. The NICU was one of his easiest stays. He required oxygen, and a feeding tube. He also needed the bili lights for a few days. He was found to have complete AV canal defect, a PDA, and pulmonary hypertension. After only 8 days in the NICU, he came home. He only required a wiff of oxygen, 1/8 of a liter to keep his sats right at 90. They didn't want him above 91 because of his unrepaired heart defect. But that tiny bit of oxygen was definitely needed. You take his oxygen off and he would plummet to the 60's in seconds. He did well for about a month. He would even breastfeed for a few minutes at a time. But his NG tube was his primary means of feeding. In January, and then again in February, he was hospitalized for respiratory distress. He would go back and forth to the PICU, but never needed to be intubated.

At 4 months old, he again went in for respiratory distress. After a week of slowly getting higher an higher with his oxygen needs, he was sent to the PICU and put on c-pap. He only lasted about a half hour on the c-pap before they had to intubate him. Again, I'll try to be brief with this hospital stay, but he was there for 4 months, spent all of that 4 months on the vent, with the exception of two weeks. He had 4 heart surgeries while there. One was a trip to the cath lab, one open heart, and two thoracotomy incisions (where they go in under the armpit) He had numerous infections, lines, CT's, MRI's, and failed attempts to come off the ventilator. He suffered a hypoxic brain injury when they doctors let his glucose drop to 0, and his temp get to 108, preventing blood flow to the brain. He suffered brain damage to his entire brain from that, and had a few seizures during that hospital stay.

The following year he had numerous hospital stays for various things. He had a g-tube, nissen, and another heart cath. His seizures started getting out of control, and we were constantly changes meds to try and control them. It was clear that developmentally he had basically stopped. He no longer smiled, or was able to roll over, and had severe hypotonia. In January, 08, his brain went into status, or constant seizing. They tried numerous strong meds, and nothing worked. They finally had to put him into a medically induced coma. This ended up being really bad. We almost lost him a couple of times during that stay. They were not able to ventilate him, and the oscillator and crash cart were parked outside his bedspace. Looking back I wish they hadn't waited and just put him on the oscillator. It vibrates air into the lungs, and would have saved some lung tissue that was seriously damaged from the high pressures of the vent. My little fighter did survive this, and the status seemed to stop when he woke up. He still had uncontrollable seizures though, and the ketogenic diet was started.

He was found to have a clotting disorder in October of 08. Since we didn't know he had this disorder, he had clotted off all of his major veins in his body. Every time we had put a picc line in, his body clotted that vein off. He even clotted off his SVC, the big vein that returns blood to the heart. Because of this restricted blood flow, he started to blow up, and his oxygen needs skyrocketed. His pulmonary pressures also skyrocketed. He was in severe heart failure again. Thats when we trached Jax. His SVC is still causing him to be puffy, but the trach has helped the symptoms. Eventually, we are going to have to address the SVC problem. His pulmonary pressures continued to be high, and his lungs are severely scarred. Also, because of his severe hypotonia, he doesn't take deep breaths. They finally put him on the vent in August.

Now its just a battle to keep our little man alive. His body is tired, his heart and lungs have been through the ringer. His clotting disorder means that he will be on a blood thinner shot twice a day for the rest of his life. His bowels don't function, he gets a liquid suppository (a mini enema) every night before bed, so he can empty his bowels. His brain is ravaged with seizures, and status could come again at any time. But despite all of this, he never, ever fusses. He brightens every ones day, and his brothers are wrapped around his little finger.

But I won't lie and say that whats happened to my little man doesn't upset me. I have a hard time going to our DS playdates, because I hate that my almost 5 year old does not interact with the other children. I've gotten much better, but it is a struggle every day to think of how he could have been. Sometimes I will dream that he is walking, and I'm putting him on the bus to go to school. We are just grateful that we were chosen to be his parents, and we love him more than anything!

Jaxsons meds are:

Seizure meds

Phenobarb 30 mg, 1 in AM and 1 1/2 in PM

Topamax 25 mg, 1 in AM and 2 in PM

Keppra 250 mg, 1 in AM and 1 1/2 in PM

Heart and lungs

Cialis 5 mg daily

Digoxin .125 mg daily

bumex 1 mg twice daily

amlodipine 2.5 mg, half tablet daily

flovent 2 puffs twice a day

tobi neb, twice a day for two weeks on, two weeks off

lovenox injection twice a day

reflux

zantac 1.8 mls twice a day

thyroid

synthroid 50 mcg daily

replacement supplements (for what his body can't make anymore, or what the high doses of diuretics take away)

folic acid 1/4 tablet daily

zinc

potassium chloride, 3 mls daily

levocarnitine, 3 mls daily

sodium, 2 mls daily

calcium 600 mg daily

PRN meds

robinol for junkiness 3 mls PRN (as needed)

Melatonin for sleep PRN

trazadone 25 mg for sleep PRN

Vent settings

T bird vent, peep of 5, pressure support of 6, 2 liters of oxygen. We feed him through his j port at night, and let his g port vent into a diaper, to keep extra air from the vent out of his belly.


I tried to download a video, but blogger is not cooperating! So here's a link to a video. This video shows a little of how Jax is developmentally. He is around a 2 month old. He won't reach or play with toys, but he is finally smiling again! Click here to see the video.

And any more questions about Jax, or if I left something out, just let me know and I'll answer them!

Not much here!

Not a whole lot going on here except for medical problems. Same ole, same ole stuff with my warrior. I thought he was getting better, and was ready to clamp his g tube that was venting and see if he tolerated it. Then last night he gagged and wretched for a good 20 minutes. Poor baby, thats got to be the worst feeling in the world.
I came across this picture from our June Disneyland trip. Its funny how things strike you at just the right time.
I was worrying about Jax declining health as he is getting older. Mostly because we know that he will only get worse, and that his life expectancy isn't long.
But look what this boy brings out in people.

Everybody has to stop and look...

Everybody has to touch...

Everybody has to smooch...



My perfect little angel!!!!

The pumpkin patch

Jaxson seems to be slowly improving. He's tolerating the vent and sleeping better at night. He didn't gag or wretch at all yesterday. So now I just need to decide when its time to try feeding into his belly instead of his intestines. We'll stick with continuous for a while of course, his belly hasn't had anything in it for a long time, so it needs time to get used to food.
We've had a lot of reminders of just how fragile he will always be. Once I landed in Ukraine, I couldn't believe I had let myself go so far away from him. Auntie Boo asked me the other day why was he taking so long to recover from this tummy bug. His body is just so sick and tired. It takes all of his energy just to function normally. You throw something nasty in there and everything just shuts down. I was reading a heart baby's blog that I found this morning. This sweet baby passed away a short time ago. Man it was hard to read, it makes everything such a reality. She talked about his whole life being spent in a hospital, being poked and prodded. It made me realize that Jax his home, but he still spends his life being poked and prodded. Twice a day he's poked, he has air forced into his lungs so he can breathe. We really do run a mini PICU in our home.
I'm just so grateful for the spunk and fight that my little boy continues to have. He wants to see his baby sister!

We went to the pumpkin patch over the weekend. Jax did what he does best, slept through the whole trip! We picked a pumpkin for Arina, since she couldn't come with us. I also just bought her's and Jax coordinating Halloween costumes. Oh its going to be so cute! You'll have to wait and see pictures, lets just say its definitely a Rugg family favorite!

Dusting off this blog

Man its been a long time, I have a lot of catching up to do! I hope everything has been well with all of our friends.
I'm loving being back home with my boys. Auntie Boo surprised us and brought Jax to the airport, knowing he was the first thing we would want to see! Man I missed my little man and his antics, which he has been pulling full force since we've been home. Last week a tummy bug made its way around the house. It was a quick one, a twelve hour bug, but Jax has been sick since. He is pale and has his dry lips. He is still gagging and wretching, which means no food is allowed in the tummy. We've been using the J port for the last week, and letting his g port vent into a diaper. He's showing no signs of getting better, as he continues to wretch, so nothing is going into that tummy anytime soon. He is not tolerating being on the vent either. Pulmo thinks its just upsetting his tummy having all that air shoved in. I hope thats all it is. He sleeps for about an hour or two, then wakes up thrashing and fussing. As soon as you take the vent off, he goes back to sleep. But he wakes multiple times during the night, because without the vent he doesn't breathe like he's supposed to. His sats have been lower also from so much time off the vent. I'm really hoping he starts to turn around soon, and this doesn't end up being a big mess!

Oh I missed my little naughty boy!


My sister left Wednesday, so we took the kids to the park one last time. I wanted to play with my nieces before they went home, since we didn't really get to spend time with them. The boys had a blast having their cousins around for so long though. Since they live in Oklahoma, we don't see them much.
Thank you so much to my sister for taking my place while we were gone!