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!