Silly little boy.....

These pictures kill me! Especially the middle one. It looks like he was dancing to Madonna's Vogue song or something!

Anyway...Colby's doing well. We had trouble feeding him yesterday. He just didn't want anything to eat. He slept right through the night and woke this morning with one heck of an appetite. So all seems to be back to normal!

We're heading out today as it's a relatively warm day for CT in December and meeting a couple friends for a cup of coffee. We love to bring Colby out and expose him to new things. Now that it's the cold and flu season, we have to be cautious of where he goes and who touches him, but to keep him on our lap and let him look around and see new things is great.

Welcome back home Colby!

Colby got discharged from the hospital this morning. He and Tracey arrived home around 11 today. He's back to his ol' self again which makes us very happy! We're tired now, more than when we was in the hospital. I think we run on adrenalin then once things slow down, we crash. So Colby just went down for a nap, Tracey and I are going to do the same.

Above are pictures of Colby and his Neurosurgeon, Dr Kanev. He's a great man. You can tell he's the kind of person that truly enjoys what he does. You have a profound impact on people's lives, Dr Kanev. We thank you so much for all you've done for Colby and our family!!!

He's back...

(Colby's right hand has his IV in it and is taped to a small board to keep it straight. He was putting the tubes in his mouth and chewing on them, so we had to put a sock on his hand to keep him from messing with it. LOL. He tried to play with his toys with both hands but was at a bit of a loss of what to do with his right hand as it wasn't of much use.)

(Colby playing with some toys that Santa brought for him)

("Daddy....can I go home now?")

...to normal! I was thrilled to enter his room tonight and see him much more like his old self. He played, smiled, babbled, drooled....all the normal Colby stuff! It's amazing what a difference a couple hours can make. So Tracey is staying at the hospital with him tonight. I'm home and in need of a good night's sleep. I fully expect Colby to come home mid day tomorrow. Above are a bunch of pictures from tonight.

Thank all of you for your support, comments, e-mails, phone calls...you name it! You can't understand what that means to us to have the support we do. Colby is a lucky boy to have such a great group of people following his journey and supporting him!

Would you like an extra night's stay?

Once Tracey came into the hospital to stay with Colby, I had every intent of coming home, getting something to eat, lying in bed and updating the blog. Well...I got as far as lying in bed. I was out like a light.
Tracey got into the hospital around noon. I honestly don't recall what time it was. We stayed together in his room for a bit, but I was tired and poor Colby was one unhappy camper. He had another fever and was boarder line miserable. They gave him some more Tylonol and then I headed out to come home and get some rest.
I just woke up and called Tracey. Colby seems to be doing much better. The doctors looked at him and said that it's a toss up. He could come home or they could keep him another night. Given the fact that he started to get better twice only to see him digress, we decided to have him stay and be observed for one more night. He is eating, though I'm not sure how much.
So I'm going to try to wake up a little, feed Hamilton and then head back into the hospital. Whenever I get home I'll have some pictures of our little boy to post. We're hoping that this time tomorrow, we'll all be back home together.

Ups and downs

Over the past couple hours, Colby has started to digress a bit again. He's becoming very cranky, refuses to eat, feels warm but doens't have a temp. He's just turning miserable again. He'll nap for a couple minutes, then wake up and cry, then fall back asleep. His heart rate has been high, around 140 to 150 ever since he came out of his last surgery. He doesn't really want to be held, but doesn't seem content to be lying in bed either. The nuerosurgeon is in the OR right now but will come up when he's out.

Day 3

(Colby looking at one of his X-mas presents (thanks Chloe and Caitlin). We tried to have a bit of a Christmas here last night, but Colby was not at all interested in much and Tracey was exhausted)(Here's our boy last night, getting some rest.)

(You can see the tape on the top of his head. Apart from that, there's no signs of his surgery as they didn't need to mess with the drainage tube in his belly)

(And here he is this morning, sitting up and more alert. He loves his Pirate Booty. He's definitely right handed, but with the board on his right hand, he was forced to use his left.)

Last night went pretty well. Colby didn't really cry, more of a moaning and whimpering most of the night. He had a mild fever around 1am and I think his belly was bothering him some. He would take longer naps for about an hour or more a couple times during the night. This morning found him doing a little better, a little livelier. He was playing with some stuffed animals and ate some pirate booty. He continues to whimper a lot and doesn't want anything to do with his bottle. I'm trying to stay quiet and let him rest.

The doctors came in around 8:30 this morning to look at him. They said he looked good and if he can just regain his appetite, he may be able to go home today. They will come back in around mid day to re-evaluate him.

Tracey is on her way into the hospital. She needed to drop Evan off at his dad's. Once she gets in, I'll visit with her for a bit then head home to get some rest.

Nothing too much more to report right now.

Ventricles, hydrocephalus and shunts: 101

I Googled ventricles and came up with a couple pictures for everyone so that you can better understand what's happening with Colby. The two pictures above are both of the brain and both illustrate the ventricular system. The flow of fluid is essentially from top to bottom. In Colby's case, the third ventricle isn't draining into the forth and thus there's a build up of pressure. This buildup is called Hydrocephalus. His Lateral ventricles are larger than what you see in the pictures above. When his shunt isn't working, the pressure builds, enlarging his ventricles and pushing his brain against his skull. The pressure on the brain causes irritability and vomiting among other things. This is exactly what's happened these past couple weeks.

This picture shows how a shunt is placed to go into the ventricle and allow fluid to drain out the top, down a tube which is placed just under the skin and drain into the belly. The pink or purple thing on the top of the shunt is a valve to allow fluid to drain, but not allow fluid into the brain. In Colby's case, he had a shunt on the left side of his head for the past 10 months and just today, they removed that from his head and placed one on the right side to access that ventricle in hopes that it would allow for better drainage. The shunt still connects to the same tube his old shunt used to then drain down into his belly. I can't really tell what the top of his head looks like as it's all covered in tape.

I hope this helps to explain things a bit.

Premature evaluation?

(Deja Vu! Here are some pictures from last Christmas. ....could have been the same room even, I don't remember. Our little guy was so....well....little!) These were taken right before he had his third ventricalostomy and right before he came home for the first time.)

(He was so small he swam in the preemie santa suit)

(Momma loving her little boy. ....Love those socks my love!)

Poor Colby hasn't had a good night thus far. He started off doing so well. But he's getting cranky again, putting his hands up on his head and rubbing it. It's so hard because we simply don't know if it's just him being uncomfortable with all he's gone through in the last two days or if it's the pressure starting to build again. We have to wait and see, but it's so hard to watch your child in this condition. We just stay near to him, love him and do what we can to help him through these tough times.

Tracey and Evan came to his room a couple hours ago. We had a make shift Christmas. We tried to show Colby's his presents but he wasn't at all interested, so we let him rest. Poor Tracey is absolutely exhausted. She hasn't slept more than a couple hours in the past couple days and the stress of it all is taking it's toll. I hope she can go home, put as much of this out of her head as possible and get some rest.

Some of the nurses again asked where she was or who was going to stay with Colby tonight. I think some of them may think that we're a bit "different" that one of us will leave for a while. But if this were the first thing Colby went through, I think we'd both be glued to the side of his bed. But it's going on a year and 1/2 now of one issue or another and you learn that you simply can't both be there all the time for a year and 1/2. We need to take shifts, let one person recharge while the other takes care of things.

I'd have to say that I think Tracey and I work so well together, both on normal day to day things as well as situations like this. We've heard of families that are torn apart when faced with issues like this. I can fully understand and will admit that what's gone on over the past year and 1/2 would put stress on the best of relationships. But we continue to support each other, learn together and grow together. In doing so I think it's a way to make something good of an otherwise crappy situation.

I hope that I won't have much more to report tonight. I've turned the lights off in the room and gently rubbed the side of Colby's head and cheek until he fell asleep. Hopefully he'll get some good rest tonight. I'm going to make up my couch/bed and try to nap here and there between the nurse's checkups. I'll continue to post updates as things progress.

Wait long enough....

Colby's back up in his room and recovering well from his latest surgery. The neurosurgeon went in and looked at the bottom of his brain where he had done a third ventricalostomy exactly one year ago today. A third ventricalsotomy is where they go down through the ventricles (there's three of them, the first is highest, the second is in the middle and the third is the one towards the bottom of the brain.) and cut a small hole through the floor of the third ventricle to allow excess cerebral fluid to drain out of the brain. His third ventricalostomy was unsuccessful last year, though we never knew why, which lead to his shunt placement last February. The surgery today allowed the doctor to go back in endoscopically and view the bottom of Colby's brain. The membrane that they cut the hole through last year had grown over. There is an artery that runs just underneath this area and adds a great deal of risk to any surgery that's done. The doctor said that there was a lot of scar tissue in the area and wasn't comfortable trying to force through the membrane in the event they damaged the artery. So he backed out, placed a cerebral catheter in the right hemisphere of Colby's brain and took out the one that he's had in the left. He then connected the catheter to the tube already in place to drain down just under the skin of the left side of Colby's body and empties down in Colby's belly.
When I first went down to the PICU recovery room, Colby was somewhat alert, but still out of it. As he recovered, he showed us all his stubby-toothed smile and babbled a bit as if to say "That did it!". As we came back up into his room, the anesthesia continued to wear off and he became more and more like his old self. I showed him his pictures on the blog and he chuckled and grabbed at the computer. It felt SOOOOOOO good to see him more like himself. He continues to have bouts of crying, but I have to think that's to be expected. in the last two days, he's had two surgeries on his head, a new hole drilled in his skull, pricks, needles and tubes in just about every arm and leg and hasn't had much good sleep. So he's entitled to be a bit cranky.
I really hope that this is the end of his latest challenge and that in the days to come, he rebounds to his laughing, babbling....drooling self. It just goes to show that you simply need to wait and stick through the toughest of times to be able to enjoy the sweetest of moments.
Tracey has been gone all day, getting some rest and seeing her family for a couple hours. She and Evan are coming in any minute now with some presents and food and we'll have as "normal" of a Christmas as we can.

CAT Scan results & back to the OR

(This is Colby mid morning)

(A bit later, things look better. Colby was sitting on Tracey's lap, eating some Cheerios. But then he started being more lethargic and ended up starting to vomit again. He threw up what he had eaten and then again on my shoulder as I carried him down for his CAT scan.)

(The hour or so before he went in for surgery, Colby just lied there. I would hold him but he was out of it and seemed to be able to support his own body better if he was lying in bed than slouched in my arms.)

The CAT scan showed that Colby's shunt that they placed yesterday isn't functioning they way it should. It's supposed to be down into his ventricle but continues to ride up back into his brain, thus not allowing any drainage. The doctor says the tube in his brain is not rigid and tends to follow the path of least resistance, so it continues to ride back up into the area that it used to be.

Colby has been progressively uncomfortable as the day progressed and began vomiting again around noon. In the past hour or two he's become just about unresponsive, his heart rate is down and breathing has slowed. The doctors reassure me that it's the pressure on his brain that's causing all of this.

I saw the CAT Scan from yesterday and today and his ventricles are enlarged, though not too badly. At least not compared to last February when he first got his shunt placement.

I just got back from bringing Colby to the OR. They are going to try to go in with a scope and see what happened with his third ventricalsotomy that was done last December. We imagine that the hole is closed and thus not allowing any drainage at the bottom of his brain. If they see that the tissue has closed and that they can access the bottom of Colby's brain without much risk, they will try to put another hole to all allow for drainage. I have to admit that having my son's head operated on in twice in two days...three times in as many weeks pulls at my stomach. Each time they go in there's risk for infection, damage to arteries and brain tissue. You have to have faith in the doctor's skill and experience. Regardless of what they see there, they are going to place a shunt on the right side of his head. It will go in just like the one he has now, but it will cross the top of his head and connect to the drainage tube he currently has. I think they will then remove the shunt he has on his left side.

I really hope this works. Colby is one sick boy right now and we were hoping that yesterday's surgery would get him back on the path to being a happy little boy. If today's surgery fails, I'm not too sure what their next steps will be or what it can mean.

I wasn't sure about posting pictures today. But I feel that this blog should be a representation of Colby's journey and show both the good with the ... well, not so good. I've also looked back on the not so good times and it helps me feel thankful for what we have. ....a wonderful little boy and ow how far he's come. I think it's important to recognize the bad times, not dwell upon them. And use them to help keep things in perspective sometimes. That things can always be worse and to be happy and thankful for all that IS going right.

It's quiet here in Colby's room now. I can hear the dinging of monitors in the neighboring rooms. When Colby's here, his monitors bring back many memories of the NICU. When he's awake we stay with him at his bedside. But as he sleeps, it allows us to do what we need to do to recharge ourselves. I will stay with Colby tonight. Tracey stayed last night and didn't get much sleep. So it's important for her to go home tonight and take care of herself. We've definitely learned that although we need each other's company and support, we're not of much good unless we each take care of ourselves.

I'll continue to post updates as I can.

Another Christmas in the Hospital

We were hoping Colby simply had the bug, but around 4pm yesterday, he started throwing up again. We called his neurosurgeon and were told to go to the ER. They did a CAT scan and saw that his ventricles were enlarged again, thus meaning that his shunt was malfunctioning again. Tracey and I stayed with Colby in the ER until around 9pm when I left to go home to get some sleep. Colby went into the OR around 11pm. I got a call from Tracey around 11:30 saying things went well. There was a blockage in the tube that goes into his ventricle which prevented it to drain.
When I woke up this morning I called Tracey to see how Colby was doing. He's been through this surgery a couple times now and has come out pretty well each time. But for some reason it's a bit different this time. He's really fussy and crying a lot. He keeps rubbing his head. I had a quick cup of coffee, fed Hamilton and headed into the hospital to relieve Tracey.
The neurosurgeon came in around 10:30 this morning and is ordering another CAT scan to see what's going on. If all looks well, they may just keep an eye on him or even let him come home today. Or, if things don't look well, he'll have to go into surgery again, maybe even putting a shunt on the other side to drain his right ventricle and offer better overall flow.
I can't say this is how we'd like to spend our Christmas. Tracey and I laughed as we left yesterday to come into the hospital and both said "Merry Christmas!". Next year we'll have a wonderful Christmas AT HOME!! We both say that although it's not fun going through this, we couldn't imagine going through it without each other. That's what the holidays should be about...family.

Merry Christmas!

Merry Christmas everyone! I hope everyone is able to enjoy the time with their families, reflect upon the memories of this past year and look forward to the year to come.
Life never seems to go the way you planned..... Tracey and I have really been running on empty lately. It's the holiday season and all that goes with that. I'm burnt from the past couple months at work. Just two weeks ago Colby's shunt malfunctioned. We just need a break and to get away. We had planned to see my family tonight. Then come back home and host Tracey's family tomorrow. Then Friday we were headed up to Maine to get a couple days of R&R. I've planned to take a little over a week off from work to recharge and rediscover a balance in life. We were both soooooooooooo looking forward to getting things back the way they need to be.
Last night, around 11:45 Colby woke up crying. Nothing too bad, just him crying in bed. I thought maybe he was hungry as he didn't finish his bottle before going to bed last night. So I came into the living room, headed a bottle for him and tried to give him some. He wanted nothing of it. He was just crying and not himself. Then, he started throwing up. He fussed in my arms until he fell asleep. Tracey laid down with him on the couch and slept with him most of the night. This morning, things seemed normal enough. He took his bottle and ate most of it. Then, out of the blue, he threw it all up. If you know the smell of formula, think of that, warm....mixed with the throw up smell. Yeah..good times. He emptied his belly and was a bit groggy. So we put him down for a nap.
Tracey and I had talked last night that if he threw up again, we were going to call his neurosurgeon as this is how things started two week ago. We called his neurosurgeon and were told to try smaller amounts of diluted pedialite. If he can't keep that down, to call him back. This is the same way things began last time. He was himself, but just kept throwing up. Then as things progresses, he weakened and became very lethargic.
Colby is now up and playing on the floor. Seems much like his normal self, but a bit pale and quiet. I'm going to wait until 10:30 and try to feed him a couple ounces. I then need to stay close to him with a bucket in the event things don't stay down. Then I'll try again at 11:30 and 12:30.
So this pretty much derails our plans. If Colby has a touch of the bug, we don't want him around people tonight and tomorrow. If it does turn out to be his shunt, well, we'll spend another X-mas in the hospital....that will make two years in a row....I wonder if he'll get a prize or something. At least that's what I'm telling Colby to keep his little spirits up. Either way though, I think we'll need put all our plans this week on hold until we have a better understanding of what direction this will take.
This isn't what we had planned. But just like many other events over the past year and 1/2,we'll make the best of things and get through it.

Happy Birthday Mommy

Today is Tracey's birthday. To my best friend, a wonderful wife and an excellent mother. You have been part of my life for 11 years now and day after day, I fall further in love with you. Colby and Evan are lucky to have you as their mother, a mentor and friend. I hope as you look in the mirror today you see what we see every day.....a strong, beautiful, loving woman.

Colby, Evan and I wish you a very Happy Birthday!

Love Sunday Mornings

("so, mommy, you think you're going to try to feed me yogurt today?")


("um....nope...I'm not feelin' it. No yogurt for me today!")

("ha-ha, I didn't eat the yogurt!")

("ow man, so you cleaned me up and threw a pile of...um....crumbled "stuff" on my plate. Can I have the yogurt back?").

(How can you get mad at this little guy?)

Knock on wood, his incision seems to be healing without any complications. He was a very happy camper yesterday. All smiles. I think yesterday he was feeling best he has in a couple weeks.

He's still not eating like he used to. I think it's just a phase, not related to anything with his shunt or surgery. He's just picky as anything now. If you find something he's in the mood for, he'll eat it like a champ. But if it's not to his liking, you can't even get him to open his mouth!

Tracey has been working 3rd shift Friday and Saturday nights, 10pm to 6am. It just changed this week to Saturday and Sunday nights. I'm really not thrilled that my wife has to work third shifts. But both of our attitudes are that we will do whatever we need to and simply get through it all. We talk about how once Colby's able to go to a daycare or preschool, it will be so much better. Right now, someone has to be home with Colby. He can't go to daycare because of his lungs. We wouldn't want to put him in daycare all week, but it would allow Tracey and I to have a more "normal" work schedule. We juggle who's working days and evenings to ensure someone is able to watch Colby. My mom has been a HUGE help watching Colby Tuesdays and Wednesday mornings which allows Tracey and I to both work that day. I'm sure many parents out there have similar stories.

Anyway, so Tracey gets home a little after 6am on Sunday mornings and goes right to bed. That puts me on Colby duty. He and I have a regular routine we follow. Once I hear him stirring, I get up, start warming his bottle and brewing my coffee. Once both are about ready, I go get him from his crib and we make our way into the living room, with a stop in the kitchen to get our beverages. I plug him with a bottle and start enjoying my coffee. He'll often look over at me. We'll "talk" to each other. I'll say something to him. He'll give me a smile showing off his two bottom teeth. Or he'll babble something back to me. I'm sure he knows exactly what he's telling me. But for now, it's pure babble to me. Then we hang out together. Sometimes we play, sometimes we both do our own thing. It's just a nice, quiet start to the day.

Colby's funny when he sees either pictures of himself or of other babies. He looks at them very intently and often smiles or laughs. There's a picture of a baby on the yo-baby yogurt he eats. So he smiles when he sees that. I'll show him pictures or movies of himself and he's captivated. I'll try to get some videos of him reacting and post them.

...and a couple more things...

I forgot to mention a couple things about Colby's recent "adventure". I finally asked the doctor about his PVL. For those who don't remember, PVL is essentially dead spots in the brain. A severe brain bleed can cause areas of the brain to die. At first we were told that we should feel lucky because Colby didn't have any PVL. Then months later, when talking with the neurosurgeon, I made the comment that he made it through his brain bleed without any PVL. The neurosurgeon corrected me and stated that he did if fact have some PVL. I was so in shock that I didn't think to ask how severe it was. It can be little spots the size of sand or huge areas of the brain. So, I figured as long as I had the neurosurgeon's in the room, I'd ask. He said it was very minor. That's all I needed to hear. I don't care where in the brain it is, exactly how much...etc. That simply put my fears to rest.
Secondly, some of you may recall that before Colby had his shunt placed this past February, they first tried a third ventricalostomy when they when through the top of his head, down through his brain, through the ventricle to the bottom and cut a small hole in the bottom to allow the cerebral fluid to drain. At first it seemed like it was working. Then we noticed his head was starting to get larger again and the CAT scan showed that it failed. Well apparently the success rate for a third ventricalostomy is rather low for children under 2 years of age. But the success rate increased dramatically as the individual gets older. So in the event that Colby's shunt malfunctions in the future, they may try another third ventricalostomy to avoid having to deal with a shunt.
So that's it. Just a couple other rather important details that I forgot to mention.
Colby continues to do well. Birth to three came this morning and said he is lacking in upper body strength. Tracey or I could have told them that. He have never liked pushing himself up. So we need to work on that.
He isn't eating too much since he came home from the hospital. And even prior to that he's been a very picky eater. That's not like him. So the doctor today told us to start keeping track of how much he's eating and what he's eating. It's funny how you never know how things may change. We were counting our blessings that he was a good eater...now he's apparently changed his mind. We'll just have to do what we can to tackle that and get him back on track!

Colby's home and doing well

We were discharged from the hospital yesterday morning. The doctors said everything was looking good and that we just need to watch for signs of infection or that the shunt isn't working properly. We have a follow up appt with the doctor for December 23rd.

Colby was a bit groggy and a little cranky yesterday. But that's to be expected. He's back to his normal self today, playing and babbling away.

They put quite a bit of tape on his poor little head (see pictures above). That's not going to be fun for him when we take it off.

So we're back to life as "normal". Thank all of you for your comments and e-mail. I've said it before...it honestly means a lot to be able to vent via the blog and to have the support of so many.

Update from Colby's hospital room

(Colby out cold recovering from his shunt replacement)

Well, Tracey called the neurosurgeon this morning because Colby wasn't getting any better. They asked that she bring him into the hospital around 8:30 where they did a CAT scan and discovered that he had outgrown his shunt and it was malfunctioning, thus putting pressure on his brain again.

Colby went into surgery around 2pm this afternoon to have a longer tube put into his ventricle.

He's doing well tonight. Very tired and pretty groggy. But he took his bottle and even ate some Cheerios. They've got him hooked up to a bunch of monitors. It's been a while since we had to juggle the wires and probes when holding him. Boy does it bring back memories!

The plan is that I'll stay with him through the night. The doctors will take a look at him and if all looks well, he'll come home tomorrow. Amazing that someone can have surgery that puts something through their brain one day and then they're sent home the next!!!

Both Tracey and I are exhausted. We've been taking shifts over the past couple nights to watch over him at home. She's been taking care of him the past two days while I worked. We've both been worried about his condition, wondering if it was his shunt. Now that we have our answers and his surgery is done, we're relieved and tired.

So that's the latest. I'll post more tomorrow after the doctors come in.

Sick little guy

The last couple days have been long ones. Colby has been pretty sick since Sunday evening. He started throwing up around 8pm Sunday and hasn't stopped since. He just happened to have a doctor's appt yesterday so the doctor looked at him and thought it was just a stomach bug. All his symptoms mirror that of a stomach bug...vomiting, irritability, being more tired. But when a baby has hydrocephalus and a shunt in their head, you have to question if this means his shunt is malfunctioning. Signs of a shunt malfunction include vomiting, irritability, being more tired than usual. Hmm, sounds familiar. Other signs of a shunt malfunction include loss of fine motor skills, impaired use of parts of the body, enlarging head and "sunsetting" of the eyes meaning the eyes will look straight down and the person won't be bring their eyes up. Thus far, we haven't seen any signs of these. But Colby is totally not himself. To be safe, if he doesn't show some signs of improvement today we're going to bring him to the hospital. They can either do a CAT scan or put a needle into his shunt to test the pressure to see if it's working properly. We don't want to be paranoid, but we can't be complacent either.
Colby's sleeping on the couch, all wrapped in blankets next to me. Tracey stayed up with him most of Sunday night. Last night, she took the first half of the night, I took "second shift". He took about 5 ounces of Pedialyte for me around 4 this morning and thus far has thrown up twice since then, but not much is coming up. So at least he's able to keep some in his belly.
The doctor also said yesterday that Colby had lost weight. He was down to about 17 pounds. Although this could have been because he was sick, he had only been throwing up for less than 24 hours at that time. So they may end up sending us to a specialist to see if he's able to absorb all he is supposed to.
So that's the latest. As always, life is full of it's ups and downs. Colby's sleeping on the couch, all wrapped in blankets next to me. With a little luck, today will bring some better news for him.

Just some pics

There's our boy!!!

(Colby wearing his new polar bear hat as we went to get our X-mas tree today)

(Colby and mommy at Colby's first X-mas party)

(I love Colby's expression here)

(Colby and the best big brother in the world!)