No Answers but home.

The MRI at least showed his ventricles have gotten smaller over the last 2 and 1/2 weeks. Other than that, we don't have anymore information on why Tyler isn't eating or sleeping well. So we wait and watch some more. This is why it's called Complex Post-Hemorrhagic Hydrocephalus. On the bright side, we made it through the snow without any problems.

Moment to moment

I would love to say that everything has turned out fine from the last shunt revision. In many ways things are fine. He's for the most part happy and running around talking up a storm. There isn't a playground he won't climb all over and give me mini heart attacks near the open areas. We are hearing another explosion in his communication skills. He's requesting things and using 2 to 3 word phrases now. But he get sleepy too often and isn't sleeping well at night. His eating and drinking has dramatically slowed down over the 2 or so days. And that annoying eye is more turned out today.

I called Neurosurgery today. After a few phone conversations we decided that he doesn't need to be rushed up to ED tonight. We are to stop giving him food and milk at midnight. At 6am he can have some apple juice before we hit the road for the Emerald City. At 830 we take another ride in the MRI machine. Then around 10am we will meet with his surgeon to discuss what the MRI shows. After that I really can't say what will happen. My "mommy gut" says we will be admitted. I can't tell if it's to treat an infection to which we don't have a fever or to revise the shunt. I will do my best to shoot off an email when I can to let everyone know. I'm packing a 2 night bag just in case. The kicker is Ben leaves for Ireland on Saturday. That will show me for being a playful jealous wench because I couldn't go.

The last picture is hard to look at. It's a picture of the bump under the incision filled with fluid. It sticks about 1 + off the back of his head. These were all just taken.

Home Again

We got home about 9pm last night. We needed to stay at get more IV antibiotics from 4 to 5 pm so we couldn't leave earlier. Everyone seemed to have a peaceful sleep and Tyler and I are the only ones up so far. He's in a great mood running around playing and eating. He's had bottle, cereal, and a waffle so far. He's also being T and climbing chairs, standing on kiddie chairs, and pulling everything off the shelves. It's good to be home.

Sleeping

Tyler came out of the procedure just fine. Angry, but fine. They did over sew the sutures and glued the crap out of them and even stitched the area that they pulled fluid out of his bump. He needed a few hits of fentanal to help calm him down as he was coming out of anesthesia. It took a lot of well place holding to keep him from hitting the floor, he was struggling so much. But not long after he finally woke up enough to open his eyes and eat some Jello. Right now he's napping comfortably. We are in the middle of figuring out his IV antibiotic schedule. The procedure interrupted the first of the 2 + hours drips. We may be finished with the antibiotics around 6 or 7 tonight. I believe they are going to discharge us, but I'm currently waiting to see neurosurgery about it.

In for touch up on the stitches

I just deposited a sleeping boy onto the OR table. Neurosurgery is going to over sew the stitches and clean him up. The quick stain is negative. We won't know about the grown cultures for another 9 or so days. Sounds like we will be headed home soon and just watch at home for any sign of infection or fevers. More to come. Rachel is doing well for her first time in the middle of this.

All is quiet.

Tyler is sleeping comfortable and soundly. Let's start off by saying Tyler isn't showing any signs of an infection. He's happily eating/drinking and very active. No fever or any signs of pain. We just needed to figure out why the hair around his incision gets damp and crusty.

He was admitted into pedi, partial by my request. There are toys and a larger area to walk in pedi than in PICU. With him so active and happy, well let's just say this is the better choice at the moment. Neurosurgery tapped his shunt bump to pull some fluid out. It's being cultured at the moment. We are all hoping for negative. As a precaution they have Tyler on 3 different antibiotics. He hasn't had this much "gun" since he was septic back in the ICN. Because we are talking about a possible infection to the brain they are hitting him with everything to play it safe. He's be on the IV now for about 2 hours and he'll need another 20 mins or so before the his first multi dose is done. But he's not on extra fluids and he's sleeping free of a monitor tonight. He'll have checks done and midnight and at 4am. I'll give him a bottle at 4am because he will be NPO at 5am.

If the culture comes back negative, not having food will be merely an inconvenience. We will be able to finish the antibiotic and maybe need to have a stitch or two put in to hedge against farther leakage. We will be able to go home after the course of antibiotics are done. If the culture is positive, we will be here for a while. That means there is an infection in the fluid around his brain. They will rush him to surgery tomorrow and take out the shunt and install an external drain. The shunt will harbor any infection no matter how long he's on antibiotics. He'll be on the big guns for close to 2 weeks with the external drain. After they decide he's infection clear, he'll go back to the OR to get another shunt. It could be over 3 weeks before we can come home if that culture is positive. So everyone say a prayer, thought, or dance please.

Back in the ED.

The hair around Tyler's incision was crusty this morning. We're in Lebanon right now waiting for admission. This time we're trying a different approach, we've taken Rachel along. She was rather cross with us for leaving her last time. So far she is doing rather well. We'll see how it goes.

Overall the goal is to make sure he does not have an infection.

More as we get it.

Week after surgery

Well it's been a long trying week. The best part is Tyler is doing great! He was fully recovered from the ordeal by Monday. (First pix here is Monday running around the yard) It's been so heart warming to see him eat and drink like a normal 2 year old (yeah, we are a month away from his 2 year birthday). I swear he's gained at least half if not more of the weight he's lost over the last couple of months. He feels heavy and solid again and I can't see his ribs quite as well now. He lost about 1.75 pounds since February. Tyler is also keeping us on our toes. Running around climbing EVERYTHING! He's refusing to sit in his booster seat with straps now. We can not get him in it since we've come home. If we force the issue he refuses to eat and sits there screaming and trying to get out. So he now sits at the table like a big boy eating at a giant's house. His little chin barely clears the top of the table. But, he's happy and is eating rather well. He's fallen a couple times off the chair trying to get down, but most of the time he asks for help now. The other big change is napping, or the lack there of on some days. He's starting to not nap on days that there isn't a whole lot going on. If he does nap, it's later in the afternoon and he is grumpy when he gets up now. I am lucky that it is past the 18 month mark, (Rachel gave up naps at 18 months) but I would have like a non cold turkey way. There are few of the nuances that drastically changed after the new shunt was installed. Like the two previous surgeries, this one also has it's share of learning new patterns and schedules of Tyler. His personality is quite intact. These changes are not personality changes so much as to routine changes.

Rachel is taking this in stride but also letting us know she isn't thrilled with what happened. She was at school Friday morning. She came home to having a bag packed and being told "You are going to stay with grandma/pa for a day or two. Tyler needs to go to the hospital". When we came to pick her up, she rightly so gave us the cold shoulder. This past week she's been moody. I truly hope she can understand some of this and that we would do the same for her (let's hope we don't need to ever).

Over the last day or so, I've noticed the hair surrounding the incision site to be crusty. Like you've got applesauce in your hair type of crusty. Behind the incision, there is Tyler's normal post surgery build up of fluid making a rather large bump, his shunt bump. One of the concerns is that crusty hair is due to a leaking incision. The trick is, we can't tell if it's normal wound seepage or if it's spinal fluid. We've been talking with neurosurgery all afternoon about it, trying to determine if it's a constant leak or sporadic leak. We left it tonight with seeing what happens over night. He has no fever, no loss of appetite, and is sleeping so infection hasn't set in. If there is some fluid in the morning, we will be heading to Lebanon to rule out spinal cord fluid. If it is spinal cord fluid, they will mostly likely have to put in another couple of stitches and another round of antibiotics. Most likely an over night because the meds would be IV. The warm fuzzy part of all this is, the surgeon is confident enough in our abilities of knowing Tyler and having a clue about what to look for, we don't have to rush up there tonight. So fingers crossed that his head stops leaking.

How to tell when Tyler is ready to go home.

Before: Clingy, lethargic, grumpy.

After: Smiling, walking, giggling, flirting.

We are home!

Discharge order has been logged.

The ball is now officially rolling. Need the IV pulled and some paperwork finished and we're on the way home!

Kiss Me, Hug Me!

Tyler and I have been cuddling for a while now. He keeps asking with his words for hugs and kisses. If I don't kiss him fast enough, I get banged in the mouth with his head. Such a sweet boy. He's also eating puffs hand over fist and is on his second thingy of OJ. He hasn't tried to get down to walk yet, but that is ok. He's still a little wobbly anyhow. He is talking up a storm though. Making up for lost time this week. Ben asked "Where's Tyler" and Tyler with the biggest smile on his face slapped himself on top of the head saying "Here". Tyler also has a blood pressure cuff on his leg and keeps saying "leg off please!" Love it.

Let the nurse flirting begin!

'nuff said!

Hopefully the video works.

Phew!

It's 5:45 on Sat morning. I got about 4 hours of light sleep, enough to push the migraine to the back.

We've had a lousy feeling Tyler for the last week. Hindsight really is clear and a bitch sometimes. Monday afternoon was like a switch to grumpy child who did not want to eat. We honestly thought he had just a tummy ache. By Wednesday he was still punky and had vomited in the morning. We saw the pediatrician that day and still came away thinking a virus. We discussed possible shunt related issues at the visit but decided his neuro check just wasn't giving us any evidence that his shunt was the problem. We did decide that if he wasn't better by Friday, we'd look into getting a CT scan. For a while on Thursday, I thought he looked pretty good again, eating and climbing up the playground and going down the slide all by himself. But in the afternoon that switch flicked again and he was right back to miserable. He wasn't able to sleep Thursday night. He just didn't look like he could find a comfortable place. Like he had a headache (hindsight again). So on Friday morning after some discussion with the pedi and neurosurgery it was decide he should keep his cardiologist appointment in Manchester and then determined if he should get fluids to treat dehydration at Sounthern or if we should go to Lebanon. (Cardiologist appointment was to follow up on his PDA from when he was a tiny baby. His heart is "beautiful" and we don't have to follow up with them again.) We happened to see on of Tyler's neonatalogist there by chance. She took on look at him and said Lebanon. This is also the time when I noticed his shunt bump to be filling with fluid again. This bump has been fluid free for the better part of a year. Which ceremented my concerns of shunt related issues.

So, in my infamous way, a call to Ben say, "Pack it up, we are heading to Lebanon!"

After a quick brain MRI and some x-rays, it was obvious that his ventricles are larger again. Also, he has grown so much the catheter in his head was 1 was too small now and 2 floated out of place. Cath's will float around in big ventricles especially if the hole used for the cath is too big because of the previous cyst fenestration surgery. Not much of a big deal. They replaced the programmable valve and the catheter for a static valve and a longer catheter. He's had a programmable valve in which could be changed using magnets to allow more fluid to drain if needed. He hasn't needed a change since 2 weeks after the install of the shunt so they decided to ditch the programmable one and use a simpler one. We can now play with magnets a little more casanovaly.

Surgery took about an hour last night. I was able to pull on a jump suit and walk him right into the OR. Let me tell you, OR wasn't as grandiose as I imagine it from like on TV. It was a small room with a big light and lots of people in "fashionable" jumpsuits. I was able to stay in with him until he was asleep. He fought so hard against the meds, but in the end it only took about a minute for him to be asleep. When he came up after the surgery he really did look like a drunken dog. Poor boy kept trying to sit up but he would fall over because the anesthesia was making him so groggy. It took only about an hour to get him settle to try to sleep everything off. Didn't seem like he had any seizures or major problems coming out this time. He recognized me and Ben and asked for Binky and Lizzy by name within a few minutes of being back in the room.

Today is all about recovery. He will be on IV antibiotics until tonight at 9pm. Post surgery procedure. If he looks good and will eat, drink, and poop, Sunday we may be home.

AM... very very AM

After a quiet but fitful night things are starting to get rolling here in the PICU. The sun is just starting to lighten things up outside. The nurses just drew his AM labs. Unfortunately his IV is only working for incoming and not outgoing so Tyler was un-impressed when it took 2 sticks to get enough blood :-(. He is still rather loopy and lethargic, but you could easily see him trying to flirt his way out of another stick. At this point I don't think it will take him too much longer to start feeling normal again.

Midnight vitals check

(sorry for the lousy pics, they were taken with my cell in a dark room)

The nurse just came in for his midnight vitals check. He asked for a "drink", drank about 4 ounces of his "milk". He has been playing with Lizzy and his new Bear, and has asked for both by name. He is by no means thrilled by his wires and tubes, but otherwise coming along nicely.

Hopefully there will be nothing else to report till the morning.

He's out!

We just got the call the Tyler is out of surgery and he did just fine. The nurse said it was a standard shunt revision. We should see him soon and will post more later.

He's going in

More as we get it.

Waiting for the go-time.

We've had our visit from neuro, anesthesia, PICU resident etc. Signed all the permission-slips and made sure they all have his history correct. Now we are waiting for the trip down to the OR. Tyler is way off his game but resting quietly on mom's shoulder.

more waiting.

2 French-fries...

On the ride up to Lebanon Tyler was bordering on catatonic, just laying in his car-seat with a blank stare. We stopped at the only restaurant on the way (McDonalds). No sooner did we get the bag of food into the car and we hear "f-fries...f-fries". This was the first time he's actually asked for food in days. So we did what any parent would do. We caved. He ate a grand total of 2.5 french-fries and some fruit-snacks. According to the pediatric anesthesiologist that's going to cost us 4 hours of waiting before surgery.

If you're waiting for the punch-line, it's not coming. Sharron took Tyler for his MRI, and right after I took him for the x-rays. Before he and I got back to the ED room the neuro resident was in going over surgery stuff with Sharron. His IV is hooked up pushing fluids, we are waiting for our transfer to the PICU. It is going to be a LONG night.

We haven't seen the images but the docs are saying his ventricles are definitely bigger. They suspect a shunt malfunction. The plan is to test each piece of the shunt and replace anything that needs it. We have known an event like this was a possibility since the shunt went in. The average shunt lasts about 2 years (we are at about 18 months now). We have been quietly hoping that he would outgrow the need for a shunt and this day would never come.

More soon.

Back on Mr. T's Wild Ride.

Tyler is back at the controls of his bus again. He hasn't been eating much this week. With the pediatrician we decided to call it a virus until the end of the week, assuming it would get better. Last night he didn't sleep, this morning he didn't want anything to eat. After some calls to the pediatrician and neurosurgery we decided it was time to investigate other possibilites.

Luckily Tyler was already scheduled for a follow-up with cardiology today. He has had a murmor on and off since birth, the neonatologist wanted a closer look. After an ECH and and EKG, they ended up telling us everything is fine with his heart :-D At the cardiology follow-up Sharron and Tyler happened to run into his neonatologist and her nurse, both immediately thought he didn't look so good.

Long story short we are in an ED room in Lebanon waiting for a likely Quick-brain MRI and maybe some IV fluids. More to follow.