Friday, June 10, 2016

Post op update

Carsyn's shunt was clogged not only in the valve but also the tubing. That thing wasn't working AT ALL.

The Neurosurgeon cleared the tubing, got it working again and replaced the valve. Now we're trying to get him off the vent and extubated.

Neurosurgery wants to leave the drain in one more night and then possibly take it out tomorrow as long as this shunt doesn't fail. That's our fail safe. If he builds up pressure, we have a way to relieve it without all the ill side effects.

So he could have his breathing tube and drain out by tomorrow. Next is GI. If he can tolerate feeds, we have no reason to stay......... If he can't, we have to stick around and get a GJ tube placed as soon as possible.

I'm sorry my update isn't very long. I just don't have much more information as of right now. As soon as everything is out and I get to speak to someone else I'll have more for you..

I'm so grateful you guys took the time out of your day for Carsyn. Whatever you did, it worked...

<3 <3 <3

Tuesday, June 7, 2016

Surgery Date

Carsyn will be having a shunt revision tomorrow. We don't have a time, because he's being added on after a scheduled surgery. So anytime after that surgery he will go in for his own.

Let's hope that the shunt malfunction was the reason for his breathing issues.

But we did find that the shunt might be the cause of Carsyn's Gastroparesis. For a year Carsyn has had issues with digesting his food. Sometimes he does, other times he doesn't and it just sits in his belly.

I had been calling every couple months to ask neurosurgery to just check his shunt. Each time they told me they weren't concerned about his shunt because he wasn't vomiting. HE COULDN'T VOMIT IF HE WASN'T EATING.

On top of that the neurosurgeon here said because Carsyn has a different brain structure than you or I do, a shunt malfunction could present differently.

I'm so mad.

I'll update again after surgery.

Monday, June 6, 2016

Not cool.

The only new news I have to share with everyone is that they do not want Carsyn here another 2 weeks. BUT this all revolves around when he can get his surgery and this tube out.....

Right now Carsyn looks like he might be getting a cold or something. His eyes are getting goopy and he's just slightly warmer than normal. His chest x-rays show that his right lung was a little diminished so they want to get that expanded again, which is working with chest PT every 4 hours. The x-rays show NO pneumonia as of right now.

But things are getting tight here. Todd's at home with Emma trying to work and make some money but staying in a hospital is expensive.. and I hate to ask but we may need some help. Originally Carsyn's gofundme was for his wheelchair van... but now it looks like we might need help with medical expenses.. Insurance won't pay for a few things so I'm trying to go around that before he gets to come home. I hate to plug it, but sometimes you have to ask for help.

If you're interested in helping out click here. I can tell you that we're so thankful for whatever help we get, and that Carsyn would be getting things he needs.

I appreciate the help..

I'll update again soon <3

In the mean time, please keep praying. We aren't out of the woods yet... Far from it.

Sunday, June 5, 2016


We've met a lot of people in our journey to where we are. A lot of good and a lot of bad. Nurses, Doctors, Other parents and their children. But there's one thing these people all have in common. They've MET Carsyn.

My mom recently married a great man. He goes out of his way for my kids and my niece and nephew. He goes out of his way for my brothers and I.

 But I have to say,.

 I have never met anyone like his parents.

His parents have only met me once, and never met Carsyn. And they still talk about Carsyn like they've loved him forever. It didn't matter if they'd met or not. Even before this hospital stay they wanted to meet him, they loved him.

Now, my mom has never really believed in going to church. but my mom called her father in law. My new grandfather.

Chris's father is a Deacon. My mom called him after I called her crying. I was following behind the transport team watching as they pumped oxygen into Carsyn's lungs and started the process of intubating him. She called him to ask him to pray for Carsyn. To use whatever pull he had with the man upstairs so we could keep Carsyn a little longer.

Do you know what he did?

He pulled over.

 He was so emotional over the news of Carsyn that he had to pull over. A man that has never met my son. His wife is the same way.

 and they have people in Florida praying for him too.

THAT is how I determine my family.

These people are my family.

and I can't wait for them to meet Carsyn.

Update: PICU stay

Right now we're doing SOMETHING right. We aren't 100% on anything yet.. I guess we'll find out soon.

They did a CT scan and really didn't see much difference in the scans of Carsyn's head from last time. BUT then they did a shunt tap. The pressure in his head should be anywhere from 8-15. His was 39. and there showed to be a little blood on the scan and the tap.

The blood is not something they are too terribly worried about. It's normal for kids like Carsyn to have a little bleeding when there are changes in pressure in the head. The only problem is getting that pressure down slowly. If we go too fast we risk him hemorrhaging. So, right now they have Carysn on a few medications to keep pressure from getting worse and now they have a drain in his head.

They drilled a hole in his skull, just small enough to fit a tube into to drain some of that fluid. They can't just change his shunt right now. If they did they risk clogging THAT shunt too. Blood turns to protein in the head. Protein clogs the tubes. His protein levels should have been below 200.....he was over 600.

So the plan for right now is to keep draining until his neurosurgeon comes back either tomorrow or tuesday. He will then have a shunt revision and his GJ tube placed.

At this time Carsyn is breathing over what the vent is giving him. and they have weaned him down to extubating levels. Meaning, they could potentially take the tube out as soon as he gets the shunt change.

But I'm pissed. I've been telling his neurosurgeon in Buffalo that I was worried his problems were the cause of a malfunction. They told me there was no way it was the shunt. THREE TIMES. FOR THREE MONTHS.

Three months the pressure in Carsyn's head has slowly been increasing. He's been in pain. and no one would take me seriously.

So on top of all this frustration I am three hours away from my 9 month old daughter. Whom I will only see Saturdays and Sundays.

This is killing me.

And we don't even know if this is 100% the problem.

They are talking about him being here another 2 weeks...

I'm so tired of crying.

more updates to come.

thank you. Please keep praying that we've figured it out and can take my baby boy home soon. 

thank you guys so much. It means the world that you care. At least I have some comfort in knowing that I have people rooting for him.

I'm on a hospital computer so I can't post any new pictures. Soon, I promise.

Friday, June 3, 2016

Prayers please.

Carsyn is very sick. It all started around the time of my daughters birth. Although we had been battling Gastroparesis it had started to get worse. To the point of losing 6 pounds in the span of a year. but that is not even our main concern right now. Carsyn has had breathing episodes where he obstructs but his oxygen levels really never dipped below 90%.

We brought Carsyn in yesterday morning around 7 am. Since then Carsyn had an episode where he just couldn't get air in his lungs. They had to intubate him. and here's the thing

No one can figure out why.

EEG came back that it wasn't seizures causing it. Lungs are clear. No viruses, no pneumonia, no infections that they could find.

Neurosurgery found some blood in his ct scan though. But Carsyn is not having any symptoms of meningitis. It doesn't make sense. They did a shunt tap and found a little more pressure in Carsyn's head than normal but not enough where they would call for an emergency revision of the shunt.. Right now we're waiting to see what they want to do next. and I'm so sad.

I don't know what to do. I quit smoking over a year ago. I'm trying not to start back up.

But this is hard.

I hate watching him go through this and I can't help him. I hate not having answers. At this point we don't know if this is Carsyns body's way of saying: I'm tired. Or if this is something as simple as something threw him off and he needs a couple days to get back on track... Either way I have a long road ahead of me....

and I'm not sure if I'm going to come out the same.

I just want him to open his eyes. I want to see him smile again.

Please send some positive vibes and prayers our way.

We could definitely use them.

I'll update again when I know more.

I miss this.

Oh, baby....

So, If any of you were aware I have something called Endometriosis. This is when the tissue from the uterus starts to grow in other places inside the body. For example it can grow on the bladder, intestines, literally anywhere inside the body. It is painful, and it is one of the leading causes of infertility in women. When I found out, it really wasn't very big. The size of the tip of my pinky finger. But it grows as time goes on and the normal thing they do for this is either A. tell you to get pregnant as soon as possible or B. put you on a birth control shot that is known to sometimes send people into early menopause. Now, I've been on the shot before. It's not fun and there are way too many side effects. On top of this Todd and I were wanting to have a baby in the future. After a year of pain I saw a doctor. She told me the best thing for me would be to try to get pregnant, because there was a very big chance that A. it wouldn't happen or B. it would take years. We tried for 2 years. It didn't matter that we weren't married yet. If there was a a chance of not ever being able to conceive in the future, we were doing this NOW.

After 2 years of trying we gave up. We accepted the fact that it would only be the three of us. We were okay with it. As much as we wanted another child, we had Carsyn. So we were happy anyway. A couple months after we stopped trying I found out I was 4 weeks along. We scheduled a genetics tests to see if there was a chance for something happening to this baby, much like what happened when i was pregnant with Carsyn. Turns out there was a mix up and we got the dates wrong. But the wonderful people at the Buffalo Perinatal Center decided to squeeze me in for an anomaly test to make sure there wasn't anything wrong at that time.

During this test we found out that I also have what they call an "incompetent cervix". I was very slowly, week by week starting to dilate. A few weeks later I was hospitalized. They were sure if I was home I was going to give birth to a VERY premature baby. One that would not live. My anxiety went through the roof. Come to find out I had a reaction similar to PTSD while in the hospital. The baby had stopped moving. I was stressing her out so bad that eventually, had I stayed I would have had her. I took myself out against medical advice and things started calming down. About a month later I dilated to 3cm. I was put on strict bed rest. They didn't even want me to take a shower standing up. No baths. No dishes. No sitting in chairs. Just bed.

After 36 1/2 long and unbearable weeks my water broke.

and I gave birth to a healthy, beautiful baby girl.

Everyone: meet miss Emma Leigh Jenkins

She sure does love her big brother <3 <3