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.