Doctor. Doctor. Doctor and Doctor!

Hey All,

Well we now have a little break from all these appointments so its a perfect time to catch you up on what's going on. Friday we went to our first appointment at the neurologist. It was good. We went over with the doc about all of Colby's minor seizures that we logged, talked about his progress and asked any questions we had. He said that Colby is doing really well. They checked out his vision and he seemed to do well with that. The test just involved the neurologist moving some objects all around Colby's head and watching to see if Colby was moving his eyes to see them or not. We also were able to see Colby's MRI. First they showed us his original MRI from right after the accident. Just a ton of different images of the brain, I could barely tell what was going on, but they did come to an image that had some bright white spots near the back of the brain. Those bright spots represented the damage done to Colby's brain. Then we saw the second MRI taken from to Thursday's ago. When we got to the same image in the 2nd MRI that damage had dulled on the MRI, meaning that his brain is starting to heal. It was great to see. He still has a way to go but it was very promising. We also have begun to take Colby off of his Phenobarbital. It'll be a month long process where we ween him off dropping it down a ml per week, until he's off of it completely. He will continue to take his Keppra for up to a year, but we are very happy to get him off the Phenobarb as it tastes very nasty and Colby hates it, he has become a master at coming up with ways to push it out of his mouth. We will go back to the neurologist in a few months for another follow-up and no more MRIs in the near future as long as Colby continues to progress. So all in all a good appointment, progress is being made and we are so happy and thankful that Colby continues to improve everyday and fights for what we hope to be a normal development.

From the neurologist we moved onto the Physical Medicine and Rehabilitation doc earlier today. It was a much quicker appointment then the neurologist. The doc just checked over Colby, looking at his muscle tone and checking his joints. She did notice that his left ankle was much more loose than his right. His left leg is where he had a number of his minor seizures. So we will be keeping an eye on that over the next few months and it may result in Colby having to wear some sort of brace on his leg as he develops. We also continue to watch this weird arching of his back that Colby does. He is constantly doing it and no one is sure if its just him trying to get another view or his way of moving around right now before he crawls. Everyone is kind of perplexed about this specific thing, we'll all keep watching to see if it goes away. We will also probably be meeting with a speech therapist to help with Colby's eating. We aren't there yet but if he doesn't start taking solids within the next 3 weeks we're going to get some help. Once we get the eating thing down hopefully sleeping through the night will fall back into place. We will also be meeting with an opthamologist to make sure Colby's vision is on track. The damage done to his brain was in the area that affects vision so its something we will constantly be watching. But all in all another good appointment, the doc said this stuff is all minor right now and we'll be keeping a close eye on the Big Cheese!

Blog to ya later!

Scott

A Quickie

Hey All,

Sorry for the short post, it was a busy weekend. But Colby is doing really well! The trip to the Neurologist went really well and we go to the rehab doc this afternoon. I'll write this evening about everything.

Blog to ya tonight!

Scott

Colby's doing well!

Colby laughing it up!

Colby has been keeping us up lately! Actually these are my replica Playdoh eyes.

Cooper copying daddy, I forgot its probably not good to show a two-year old how to shove playdoh in your eye! :)

Our smiley guy is back!!

Coop hanging with Pops while I rake my life away.

Hey All,

Well our little guys are doing well, still getting over the coughs etc but fevers seemed to have disappeared. Colby had his "6 month" checkup today. He did great. He's doing really well. The doc said that he is doing everything a 6 month old should be doing. So that was nice to hear. Growing like he should, he's up to a little over 15 pounds. Our main concerns at the appointment were talking to the doc about Colby not really eating solids yet and his not sleeping through the night, both things which he did before the accident. The doc said to just keep trying to get him to eat, trying to feed him once a day and get him used to putting things in his mouth. We think part of it may have to do with all the meds he's had to take and how he hates taking them. We'll also be able to get some more info from the Physical Medicine and Rehab doc, Dr Green, on what to do. We think he's really made some strides this past week as he is babbling up a storm saying mamamama, bbababab, dadadadadd and he's sitting up really well too. Very exciting. Still one of the worst things is giving him the darn meds. He locks his lips and has learned to push it out with his tongue, he's one smart little cookie. So we keep plugging away.

I haven't really mentioned it but we LOVE our new daycare. Its awesome. Everyone there is great and the kids have been doing awesome. Coop has been doing cool art projects and we can tell he has really picked up alot of stuff already. He's counting great and came home the other day saying Turkey, Gobble, Gobble.

Friday is our big Neurology appointment w/ Dr. Mott. Hopefully some questions will be answered and we'll get the results of last weeks MRI. Keep your fingers crossed. I'm hoping that this appointment just confirms what we think is going on.

We went and fed the ducks up at Hines Park today, Coop and I brought out a bag of bread and we started to walk over to the ducks and I thought we were literally going to get trampled by ducks. It was Night of the Living Ducks. They were chasing us down and staring at both of us like were bags of bread ourselves. Anyways we got to a fence that worked as a nice barrier and we're able to feed a loaf of bread to about 20 ducks.

"Hey This is Colby, I didn't know it was HIM!"

Well, guess what, we went back. Yup that's right we had to go BACK to Mott again yesterday. Everything is fine but yesterday Colby spiked a fever of about 102 and we called our pediatrician to let them know as he was kind of lethargic and really warm. In the meantime we gave him tylenol and he started to cool down and get his normal demeanor back. Well the doc called back and said being that he was intubated for his MRI he could have aspirated and could be getting pneumonia and we needed to get him checked out. He also had spit up some green stuff earlier in the day, just a bit but we did notice it. Had the pediatrician been open we just would have gone in to the office. But of course they were closed. SOOOO off to UofM we went at about 5pm. We just went to the ER and ended up being there for about 4 hours. When we got there he of course had no temp, but at one point it did shoot up to 103. They checked him over, irrigated his waxy little ears so they could actually look in them, checked his urine for any infections via a catheter (poor guy) and then gave him a chest x-ray which ended up being clean. We questioned the x-ray thru the resident, onto the fellow and then to the attending, as he's had so much radiation in his little life already but finally agreed to do it as the attending said we really should. All of that and really nothing came about. They said he has some flu-like symptoms but nothing they can really do. He is a candidate for TamaFlu but for babies it just ends up giving them worse symptoms so they like to hold off giving that to them if they can. His demeanor throughout this whole episode was pretty much his normal self so that was good. He was talking and smiling etc. We got recognized twice by the registration person and the attending on our visit and that is just not good! I mean come on ... this is getting borderline ridiculous! :)

So we'll just be keeping an eye on him all day and we just have to call the pediatrician if his demeanor changes at all today, just more stuff to watch out for!

Blog to ya later!

Scott

Finally, Back Home

Hey All,

Colby is back home and doing great, we got to go back to recovery about 30 minutes after the last post. He was groggy but awake and in his phase 2 of recovery. Jess fed him seeing he hadn't eaten in like 9 hours, he was just a tad bit hungry! :) So he snoozed a bit, we watched some Cash Cab and then rolled out. Come to find out our recovery nurse thinks she was on call when Colby first came to Mott from his initial Survival Flight back in April. She was calming him after he arrived and came off the helicopter. Anyways, all is well, as usual the Mott staff was awesome! Our little MRI excursion turned into a 6 hour trip to Mott, which we thought would be an hour or two, what were we thinking. Hopefully Colby will use all the craziness of today to sleep through the night, lets hope so! :)

Blog to ya later!

Scott

He's In...

Hey All,

Colby is being MRI'd as I write, he went in about 45 mins ago, should be done any time now. Then he goes to Phase 1 recovery and then Phase 2 so I imagine we're looking at a couple more hours here. Hopefully he'll be out soon. We have a pager like you get at Applebees so when he's done they'll page us.

Scott

Waiting and waiting and ....

Here's Big Bro giving Little Bro a big smooch before leaving for his MRI!

Hey All,

Well we're at Mott in the pre-op room just waiting and waiting for Colby to get anesthesia and get this moving. They're backed up like crazy and were probably an hour away from getting in. Looks like a long day. Colby is a stud he hasn't eaten since 9am and he's doing well. The nurse has him right now and is keeping him away from Jess so he doesn't start crying at the site of Mommy. Colby is only half the worry as Mommy and Daddy may start crying soon if we don't get something to eat!

Scott

Monkey See, Monkey Do

Hey All,

Here is my first foray into the world of iMovie. There are some kinks to work out but hey its my first shot. Definitely not as good as Jessica's, "Cooper's First Year" video (which is still on the blog located in 2008, July) but it'll do. But this is all from Halloween day. As we move into the the retail xmas holiday (November) and the real xmas holiday (December) not being far behind we all realize there are enough songs you could play a new one back to back for the entire month of Nov and Dec. But as I created my Halloween short I noticed there are very few Halloween songs. Sure, you've got your psycho theme, the Halloween Movies theme, The Shining and The Exorcist. You've got Monster Mash and some song from the Nightmare Before Christmas. But that's it. Some other random stuff but nothing. Is Werewolves of London a Halloween song? I don't think so, but iTunes says it is and if Apple says it is then it is, but I'm not buying it! Anyways I hope you like my choice, you been slimed! :)

Blog to ya later

Scott

Big Brother is Watching!

No, I don't mean Coop, I mean all of us! Yup, we finally found a counter gadget so we can see how many people have visited the blog! Whohoo!

Now it also logs my clicks, but hey beggers can't be choosers. Its located right above our 2nd family blog portrait.

MRI day

Big Day Tomorrow!

Its Colby's MRI day. I feel bad for the little guy as he has to go under for this so he doesn't squirm. More pokes. But we all know he's one tough dude so it's nothing for him. He can't eat after 10 a.m. tomorrow so come MRI time he may be a bit feisty! I'll do my best to update his progress via the blog.

While in Ann Arbor tomorrow I plan on swinging by Rich Rod's office at Schembechler Hall to see if he'd like to give a scholarship to Colby to start in the secondary this weekend. I figure a 6 month old baby will do just fine back there! :)

Check back soon for some photos from Cooper and Colby's Halloween hi-jinks!

Big Week!

Hey All,

Big week ahead, its MRI time! We will be taking Colby to the 2nd official MRI. Hopefully we will be shutting doors on what it is that is actually going on with him and not opening new ones. We won't know the results until the following week. One nice note is that we haven't seen/noticed any minor seizures over the past few days. That's been great. Once the MRI is done we have a number of appointments coming up over the next couple weeks: Neurologist, Pediatrician, Physical Rehab and Early On.

Seinfeld-esque!

Colby still has his minor seizures (when I say seizure think muscle twitch, we've all had them and that's what Colby's look like) pretty much everyday, just minor and only a couple a day, mainly concentrated in his left leg. But he did have a very funny one just the other day. I must say it is very weird and surreal to talk about a "funny" seizure your kid had the other day. Three weeks ago I would never have used the word "funny" and "seizure" in the same sentence. But I guess this is our reality and the little things that become normal can eventually bring out different emotions from, say, the first time you experience it. This seizure instantly brought to mind a Seinfeld-esque moment. You all know what I'm talking about. Numerous life events that we all experience, good, bad, funny, crazy, aside from absolute tragedy, can be related back to a Seinfeld episode. And if your specific incident didn't happen to come up in a Seinfeld episode you often can certainly see it being a focal point of one. To give an example of what I'm talking about (I have a ton, trust me) I think back to my days as a studly student on the campus of UofM. I was hanging out with this girl and we were just getting to know each other. Hanging out, talking. While we were conversing, I passed some gas, farted, tooted, what ever you want to call it. This incident was completely unexpected. I had no time to prepare. I was mortified, but this girl never acknowledged it, didn't crack a smile, give me a weird look, nothing!, Needless to say, I told all my buddys in the dorm what had happened and after incredible ridicule, people began to think maybe she didn't hear it. I couldn't imagine, there was just no way. I was absolutely embarrassed and eventually told my friend who had introduced me to this girl, what had happened. After expecting my friend to kick me for attempting to ruin her perfect streak of matchmaking by dropping bombs, she proceeds to tell me... "Oh, didn't I tell you she's deaf in one ear." WHOA! STOP THE CAR! WHAT!!!!! ARE YOU KIDDING ME! Wait.... a..... minute....., so there's a chance that this girl didn't even hear that. My first thought was I'm living my own Seinfeld episode. So this unbelievable exclamation started numerous discussions on our floor regarding the matter. Did she even hear it? Maybe she didn't hear it cause SHE'S DEAF! I was in my own personal controversy. A main point of contention was whether her deaf side was her right or left side, this mattered greatly to whether or not I was totally in the clear! Give me a grassy knoll, a second tooter and we have our own personal government conspiracy! To wrap this lovely tale up, my matchmaking friend was able to find out she DID hear the lovely noise and was okay with it, BUT we only saw each other a couple more times. If you can believe it, this story is the number two Seinfeld moment of my life. Yes, that's right, I have one moment that tops that, its close between the two as to which story should be number 1, but I think I've selected wisely. I'll reveal number 1 in a future post. Back to the dude I'm supposed to be talking about, Colby. Colby's little Seinfeld-esque moment occured Saturday or Sunday, can't remember now. We put him in his car seat and picked him up to leave, as I picked up the car seat he started moving his eyebrows up and down. "Hey, look at Colby, he's giving us the eyebrows!" You know the move when someone's trying to be cute, like the kid from Home Alone, they raise and lower their eyebrows. We instantly thought how cute and then started to think wait, he's a little young to be doing that, then thought wait is that an eyebrow seizure??? You can see how this progressed thru a whole gamut of emotions. It lasted only about ten seconds and I instantly thought this incident has Seinfeld episode written all over it. Obviously the baby would have to be replaced by a woman and she would have to be doing the flirty eyebrow thing to George, then George would go over introduce himself, say I noticed you flirting with me, she'd be eating dinner with her boyfriend he'd get mad at George and the girl for flirting yada, yada, yada... :)

Blog to ya later

Scott

Time to post already?

Hey All,

You know that thing you do, something that you only have to do once a week? Like cutting your nails, mowing the lawn or showering? :) That's what my blog posts have become, something I only do once a week. Honestly that's not my master plan, but seeing that were back to real world time and off hospital time, I've come to one assumption, hospital time allows for alot more blogging time. In the real world its hard to squeeze the blog in. But, we'll keep typing away!

Colby is doing really well, he keeps progressing as the days go by. He has been rolling over now from his back to his belly and from his belly to his back. He has been talking more too, his vocab now includes a girly type scream and "blah,blah,blah" so that's been very exciting. He's also starting to sit up and very soon should be a sitting stud. He hasn't decided to go back to eating cereal just yet, but seeing him eat cereal before all this crazy stuff went down leads me to believe once he figures it out again he'll be eating us out of house and home. Colby also hates taking his medicine, OMG does he hate it. He cries and throws his head back and squirms, we feel so bad for him, the dose is large and it tastes bad, at least that's what we hear. We did get it flavored but I think now its just some nasty tasting strawberry stuff. So as we try to give it to him, he squirms, we miss his mouth or he chokes on it and we continue trying to maneuver this cheap little Walgreen syringe to get into his mouth. Its kinda like in Star Wars when skywalker and his boys are trying to drop the bomb into the death star to blow it up. They have to wait till they get to just the right spot and time it perfectly, me too. I'm in my little X-wing fighter and Colby's moving all around, his mouth on total lock down, then he calms for a second, opens his eyes, pops a little smile and BAM I swoop in and drop a shot of Phenobarb right in there, hit the target spot on. Then two seconds later I crash and burn as I push way to much in, he coughs it up and it becomes a red syrup-y nightmare! Probably how it looks on the set of some second rate horror flick. Red Syrup everywhere! This stuff stains too. Yuck! The worst part of not getting all the meds in Colby is obviously the worry that he won't get his proper dosage. Its one of those deals where he seems to be getting most of it most of the time. They did say to us, I think in the hospital, that if he misses some by dribbling or coughing it up, that its okay, but still we worry. Today we came at Colby together I held his head and Jess gave him the meds, it worked so much better. We got it done alot faster too. Which leads us up to his seizures.

Movin' Forward

Hi All,

Colby is doing well, he is regaining his strength and starting to rollover again. He's playing with his toys and just getting back to his happy little self. Colby seems to have regressed back to like a 4 month old. He seems do be doing stuff that he did at 4 months, woobly body, just starting to rollover, doesn't want to eat cereal, stuff like that. But he is starting to get some of that stuff back. Sleeping has also been a bit of an issue. He used to sleep like a dream. I mean 10pm to 7am, like clockwork, not a peep. This started right after we came home from the hospital from heart surgery and got him off the feeding tube. Now he's up all the time. Sunday night he was up and down all night. Anyways, he had a decent Monday night, so that was great. Unfortunately, Colby started having some minor seizures again. We went 3 days without any then Sunday, bam, they started up again. So we called our Neurologist who upped Colby's Keppra dosage from .65ml to 1ml. He had 5 minor twitches on Sunday and 3 yesterday and 3 today. The neurologist said it would take a couple days for the new dose to work its way through Colby's system. So if he has more tomorrow we'll call again and they may have to up it more.

That being said tomorrow will be Jessica's first day back to work. Having to leave the kids is tough, I know Jess is bummed, but I like to think it'll all be okay. Mini Cooper and the Big Cheese will be heading off to their new day care digs. We are very excited for them. It's a great place with what looks to be an excellent staff with great experience. They each will have curriculum geared towards them and their needs and Cooper will be doing all kinds of art projects and fun activities while getting to interact with a number of kids his age. Its very exciting. Its also a little sad that we have to leave them again, especially with everything that has gone down. Unfortunately we don't really have any other options. We both have to work and this is the reality of the situation. We put together a seizure action plan for Colby describing what to look for and what to do in the case that a seizure occurs. If Colby has a seizure and it's minor then they will record it in our journal sheet we made for the teacher. We also included when to call 911 with a number of bullet points and the same thing for when to call us. The teacher was very confident and has had a kid as recent as two yrs ago who had seizure issues. We hope that nothing happens while Colby is in her care but if so I'm confident of the plan we have in place.

I'm sure there are people out there who would say how can you take your kids back to day care after this. It's easy really, we have to and we have to believe that this was a one time incident. We have to believe in the fact that they will get great care at their new digs. We have to believe that getting back to our normal lives will soon be coming around the corner. And beginning that process is getting the kids back to day care. If we had any major doubts about the kids safety or well being we obviously wouldn't do this, but we're both okay with this. We cannot let our lives be defined by this incident and let it scare us enough into altering how we would normally live. Don't mistake what I just wrote to mean we don't care, Oh we care. We probably haven't cared about many things more than we do about this. We've made changes, fixed things and a small part of each of us is changed forever from this incident. We will never ignore this incident or pretend it never happened. This incident is a part of Colby and I hope as he grows he views it as one small part of who he is. But we won't let it completely define who we are, or who he is. Obviously we will be upside down for a while, scared, confused, angry, concerned, up, down etc. ultimately we need to grow from this whole incident, learn from it and make the best of it, whatever that may be. I know that all sounds like cheesy lines from some ABC After School Special, but it all rings true.

Blog to ya later!

Scott

Home Sweet Colby

Hi All,

They say Home is where the Heart is, we like to say Home is where the Colbster is! Yes that's right, Colby and Jess came home today, so did Cooper and just like that the fam is back together again. Colby is doing really well. The biggest struggle is watching him, any movements he makes you wonder, is that a seizure? Its a scary thing but something we'll just have to get used to. One of the many bumps on the road we will be traveling. We also picked up his medicine today. A big old bottle of Phenobarbital and a little bottle of Keppra. Its really frustrating to have to measure out these medicines and then give them to Colby. When you measure it you freak out, making sure you're giving the correct amount? Now its the Pheno that's 5ml right? And the Keppra is .65ml right, double check, triple check, quaddroople check. The phenobar is really bad tasting, so we have to get it flavored, Colby made this awful face when we gave it to him this evening.

So were kinda in the same boat as we've been the past few days no new real news, just playing the waiting game. We have numerous up coming appointments which will further open the curtains on what is coming for Colby in the future. MRI, Pediatrician, Neurologist, Phys Med and Rehabilitation, etc., etc.

That's about it for tonight, I'm about to fall asleep at the keyboard, night, night!

Blog to ya later!

Scott

5th floor vs. 6th floor

So Ice Cube is still singing! Another great day for the Big Cheese. He made more improvements even over yesterday. He was smiling, locking eyes with us, tracking, etc. All great things. We finally moved out of the ICU and up to the 6th floor. I'm a 5th floor kinda guy, to be honest. I know more people down there and some of my peeps are in rooms down there. And the coffee is free! What's up with that, free coffee if you're in the ICU or have a heart kid and 25 cent coffee if you have a brain injury? Since when was there a class system for injured kids' parents? I'm going to the top with this one. :) Colby had his last IV taken out and he can now receive his seizure meds orally. He does have one MEAN case of diaper rash as the meds he's on give him some loosey goosey stuff, if you catch my drift. But otherwise he's doing great. He is cooing up a storm and babbling away. We're still in the waiting game for everything else, today at rounds they said Colby would now get a follow up MRI in about 2 weeks. The Neurology team also found an article that states Colby's type of brain injury can occur from a hypoxic event which means that they are leaning towards this as the diagnosis. But nothing official yet. We were also visited by the Physical Medicine and Rehabilitation team today. We'll be meeting them and following up with them as Colby progresses throughout however long we are going down this road to recovery. So that's about it round here. I'm heading back to work on Thursday and well be hopefully coming home soon.

Blog to ya later!

Scott

EEG-OMG!

Sooooo...Colby had to have a 20 minute EEG today, just to check if any issues that didn't show up before showed up this time. This was much, much better than the 24 hour EEG that comes with the bandage and gauze helmet you've seen in some of the other pics I've posted. Now this video looks crazy. Yes the little man was taped to the bed, (to restrain him from squirming) wrapped up like burrito (also to stop squirming) and looked like he just filmed some crazy scene in Matrix 4. Playing the Restrained Burrito in Matrix 4 scene 25, Colby Drew! And it only took one take too! But through this entire 20 minutes, he pretty much just sat there cooing and babbling, it was the funniest and cutest thing we've seen in days. Aside from the scary look of this video no people or stuffed animals were harmed in the making of this video!

"Today was a good day"

Hi All,

I know alot of you are following the blog and I'm probably not feeding your blog appetite with these once-a-day entries. I hope to get more than one post up in a day but its just been kinda draining round here lately. But that being said, like the famous rapper/actor Ice Cube once said "Today was a good day"! Colby did awesome today. NO SEIZURES! Yes we can officially say no seizures today. Now the only thing we knowingly have to thank for that is the medicine. The same medicine that knocks Colby on his cute little bootie every time they give it to him. He's in a daze but as his body gets used to it he'll react better and better to it. He was the most active and the most himself he's been since Thursday. He's been looking around, playing, cooing and babbling and giving us some hints of the oh-so-cute smile we so badly want to see. He's getting there.

So we spoke to the Neuro team again today and they really didn't have too much new info. They did have Colby's lactate test come back today and that was normal which was a huge relief. The past two lactate tests were high and if this one had come back that way they would've begun some metabolic testing. Those metabolic diseases can be really rough from what I've read. I'm quite proud of myself, I've completely stayed away from the internet diagnosis. As tough as its been, I refuse to freak myself out with all the awful things you can read about when you type a medical term into google. I say this to you as I did break this rule last night when I decided to look up Metabolic disorders. I really knew nothing about this topic and so I wanted to get a brief intro. I read a little here and there and then stopped. No more, thanks. So Colby will be getting another MRI early next week and that will really give us some info. See, when you have a brain injury show up on an MRI and you do a follow-up MRI too soon it can show a false positive and show no injury, giving you false hope, then 3 days later you'd do another MRI and the injury would show up again. The brain is a weird area and it can look as though its healed itself when it really hasn't in this small little window after an injury occurs. Anyways with this next MRI the Neuro team (Dr. Hoban, Dr. Mott and Dr. Foy )will be able to tell if the injury is progressing in the way a hypoxic injury should, if so we'll continue on that path. If it doesn't show this then we may need to focus on rare metabolic disorder testing or rare genetic disorder testing. But we'll head down that road only if we need to.

That's about it around here, nothing too much! :) We moved for the fourth time, still in the ICU just a few beds down. They like us around here. Colby is very popular. :) We should be in general care Wednesday, just waiting for a bed. I won't lie these past 7 days have drained us. Between this, looking for new day care (which we found at a great place in Livonia) and some other fun stuff, I think we're spent. Jess has been a superstar again, just like last time. Juggling numerous tasks and handling it all with ease. Not to mention we've been living in what constitutes a space the size of a bathroom for the past 7 days. We haven't gotten on each others nerves too bad! Well I'll be heading back to work on Thursday, just going to take Wednesday to make sure we have another good day here and then Jess will be holding down the fort here in general care. I'll be coming back up right after work.

One last thought, I was chatting with the dad of the family we met back when we here for Colby's heart surgery, the family from Kansas who are here for their sons second heart surgery. (Side note: I still cannot fathom that I'm seeing these people again. This is like the coincidence of a lifetime. I mean I hoped to keep in contact with them, but knew it probably wouldn't happen and here we are, just freaking crazy!) We were talking about how many amazing things go on in here. I know I've written about it before but it is mind-blowing. Yes, I know it goes on in every hospital and you can surely say it about those places too. But really sit back and think about all the kids in here and what they've gone through, overcome, or battled, its awe-inspiring. One dad the other day said everyone should be made to come here and walk through the ICU or PCTU (heart wing), he said life would be a lot different on this earth. It's totally true. Just witnessing in this short week what Colby has had to endure is more than I have ever gone through in my entire life, he's six months old. Like today, he had to have another blood draw. He was just sitting on his bed cooing away as this guy stood over him and poked him right in the arm, he cried for 30 seconds and then stopped. Now keep in mind he's had about 20, 30, 40 other pokes all-over his body. Yet he lays here today just content as can be. That is the definition of strength and he doesn't even know it yet, how strong he is. He is a hero to me. All the kids here are heroes.

Blog to ya later.

Doogie

Hey Doogie

Hi all,

Its been another up and down day with the Big Cheese. Colby had a number of small seizures throughout the morning and afternoon. A total of 4 but they were somewhat different from the other minor seizures. These occurred on his right side instead of his left and started as twitching in the entire arm and moved down to the elbow, then down to the fingers. Kinda weird, they call it the Jacksonian March. Anyways, they were minor and Colby was alert the entire time of each episode. Due to these episodes he didn't get to leave the ICU yet. They did move us from the nice quiet secondary ICU back to the main ICU but were in a private room. He also is on a second anti-seizure med now to help curb these other episodes. It seems to have worked as he has been peacefully sleeping through the evening. We met one of the other attending Neurologists, who essentially told us its still a waiting game. They will be doing more metabolic testing and are still considering genetic testing which both would be HUGE coincidences if this all didn't go back to Colby's hypoxic event. Anyways were still looking to probably be here for about a week. The plan is to first get these seizures under control and get that all figured out and move forward from there.

Today at rounds it was pretty funny. Colby became a teaching tool for a group of Med students. Due to his transposition of the great arteries, the doctor conducting rounds began quizzing the group on different issues regarding Colby's TGA and how it could coincide with what happened to him. Like Jess said it was our own personal Grey's Anatomy moment. Some of the group were sweating and the Doc kept firing away, with no mercy. It was cool to watch and I felt bad for the group, they looked stressed. Now we've had a House moment and a Grey's Anatomy moment, now all we need is a... wait we had an ER moment, YES! the cycle! House, Grey's and ER all in a week. Now if I have a Doogie Howser moment, that's it, I'm done. Some 14yr old better not come into the room tomorrow, or I quit, but I am typing on my computer at 12:30 at night, just like Doogie, did at the end of each episode, so technically...nah...

Blog to ya later.

Scott

Some more pics of Colby and Cooper

Here are some more pics of Colby and Cooper hanging out.

Roller coaster

Colby peacefully sleeping today after getting a full little belly.

Hi Everyone,

Its about 3:45. Its been another roller coaster of a day. We were up every couple hours last night to feed Colby via a bottle which is a good thing. He's been eating like crazy all day. Taking 5 ounces one time, 7 ounces another, just chowing down. He even started nursing. The one bummer is Colby had a few more seizures this morning, nothing too bad but still a seizure. He had a couple, one of the seizures just involved his left arm twitching, but thru the seizure he was very active, talking and moving his other arms and legs on his own. It was the most active he'd been thru the morning. That was kinda weird. But these seizures seemed to occur because they think his phenobarbital was wearing off. So they gave him a new dose and he's been fine since. They also removed his EEG monitor. Every seizure he has had has been visible and clinical so they can see them without the machine, no internal seizures. Its great to have that off him because the whole helmet bandage and sensors really irritated Colby, poor guy. So we spoke to the Neuro team again and there is really no new news. Just playing the waiting game. They ruled out a metabolic disorder and are waiting to decide if they'll even do genetic testing. They continue to lean toward this whole thing being a result of Colby's hypoxic event. So alot rests on seeing how Colby does over these next hours, days and weeks. That will determine course of events and how we handle numerous different things. Wish we had more info but we just don't. The docs are telling us everything they know, we are all in the same boat. But Colby is unhooked from the EEG and IVs currently so he is sleeping in Jessica's arms in a chair in our room. He looks so peaceful right now. He also is doing alot more of his own cry and babble, its been great to see.

Jess, Laura and I went into campus this afternoon to have some lunch just so we could get out of here for a bit. It was nice.

That's it from here, watched Michigan lose it in the end last night and watching the Lions lose it right now. Oh well.

Blog to ya later!

Scott

Some nice pics of Colby

I don't want to leave you with a bunch of photos of Colby looking all bandaged up, so hear are a few photos of him on some of his more cute and studly days! We put together Team Colby Drew (and Cooper too) for the Big House, Big Heart run last weekend were we finished our 5k at the 50 yd line of the Michigan Stadium, Colby was so stimulated after the run he had a huge smile on his face for most of the morning. We hung our Team Colby sign on Colby's bed here in the ICU.

Pics of today

Our Team Colby Drew (and Cooper too!) poster on Colby's bedside.

This is the dreaded EEG monitor that watches Colby's brain waves.

Feeding Colby, that's "Greg" in the background. :)

Still Feeding Colby, he's going on 6 ounces!

Sleeping peacefully, the bandages on his head are to keep the sensors inplace for the EEG monitor.

Still sleeping...

What a difference a day makes

Hi All,

Well its about 6:30pm. Colby has been moved to a different bed in ICU to an area called moderate care. Its a little more quiet down here, better for his EEG. No new news yet from anyone but he just looks so much better today then yesterday. He's still pretty much out of it but he's eating really well. Just got done feeding him almost 4 ounces from a bottle, he took it down great and he's ticked off right now, crying up a storm, all of this good stuff. Last night he was just not in a good place, overstimulated and moaning, had a small seizure etc. I woke up this morning just carrying the weight of the day ahead and kinda dreading it. But now it feels like a whole new world. He still has a long road and we don't entirely know whats going on yet, but just watching him making some kind of forward progress and hearing some optimistic words from the Neuro team makes us happy. Cooper came up today and we got to hang with him for the afternoon, that lifted us up to. They had a beach party up at the family resource center so we took Coop up there and he fished for a prize, built a marshmallow castle and learned how to surf on the carpet. He had a blast. It made us all smile just watching him.

We were talking earlier how we are living our own episode of HOUSE. I'm sure most of you are familiar with the drama on fox about a doc trying to figure out medical probs. Were just waiting for Hugh Laurie (House himself) to walk in, cane and all, and tell us off.

Like I said no new info yet, as soon as we hear anything well let you all know. I'm guessing nothing today. Colby's currently ticked off and were just trying to calm him down.

We also have a male nurse on this shift right now, which is totally fine, but I can't help think about the movie Meet the Parents, with Greg Focker, who's a male nurse. When DeNiro says, Greg's in the medical field...he's a male nurse! Just put a smile on my face.

Scott

Making Some Progress

Hey everyone,

Sorry the info around here can be slow to come by. Colby is having a good morning. He made it through the night without any seizures. He had a minor one around 11pm, but no more after that. Jess and I slept in the waiting room last night along with a number of other families. We all had a nice little dump session on what each of our kids is here for. We feel like veterans now as two of the families were getting the same surgery that Colby had 6 months ago. We relayed to them how well he has done since then. Anyways, Colby was sucking on a pacifier this morning so Jess asked if we could feed him. He took down an ounce or two via bottle. We were very excited! He was also making some normal-ish baby sounds and moving his arms and legs all around somewhat like he usually does. These are all very good signs. We just spoke to the neurological team. Finally some solid information. The part of the brain that is affected is the area of the brain that deals with vision. Its the part of the brain that makes a connection to what you're seeing and what it actually is that you're seeing. Dr. Robertson says that Colby's brain is not damaged, just injured and mildly at that. The swelling is somewhat minimal. All good things. I'm taking away from this that this injury can/will heal up. The one issue that the team is currently focusing on is the area of the brain that is affected. This area is not often affected due to a hypoxic event (lack of oxygen). So because of this the team is somewhat baffled. They will be doing testing to rule out a metabolic disorder or a genetic issue. This is the current plan-of-action. Its a wait and see period right now. But Colby is on phenobarbital to stop any seizures from happening and still being monitored via the EEG brain monitor. I feel he's making some small progress and the neurological team seems optimistic, so are we. He's got so many docs coming to check on him, some just to see how he's doing.

On a lighter note Jess and I watched the Office on our computer last night for some good old comic relief. I hope to watch at least some of the Michigan game tonight for some distraction too. I know if we were at home Colby would want to watch it so somebody has to tell him what's going on, right! :)

Thanks again everyone for your thoughts, prayers, prayer chains, messages, voicemails, everything. We listen or read them all and thank you again and again. This seems like deja-vu from 6 months ago but also like last time I think its really working.

MRI is done

Hi,

Colby just got back from his MRI. He's back in the ICU and resting. They put on his lullaby and he fell right asleep. We don't have any results yet. Unfortunately he has to go back on the EEG machine which monitors his brain waves as he had a very small seizure around 2pm and they just want to continue to monitor him. He had it because his brain is still swollen and some of the meds he was on to prevent a seizure from happening were wearing off, which they put him right back on. Poor guy has to get more sticky pads put all over his head. Anyways our next thing is waiting for his results. He also will get a spinal tap pretty soon to rule out Meningitis. His vitals are stable and he continues to breathe on his own, GO BIG CHESSE!

Thank you everyone for your prayers and well wishes we are reading them all and appreciate everyone of them, your support means so much to us.

Some good news?

Hi all,

Well its about 11:30 and we just met with a neurologist. She was very optimistic. The damage that they originally saw in the ct scan they think could be a technical issue with the ct scan itself. If that's the case there's nothing like scaring the living crapola out of us. But we'll know more for sure once Colby has his MRI which is scheduled for 4pm. We may not have the final results until tomorrow morning but we will keep our fingers crossed that they get us some answers not too long after its done. He currently is sleeping and is pretty much out of it do to all the meds he's was given in the ER. So much that he may sleep till tomorrow. They are playing some lullaby music to calm Colby down at his bed as he was a tad bit agitated and that seemed to help him, he's sawing logs right now. The EEG brain montioring they did all night didn't really show anything negative, it all looked pretty normal. There was one little area that did show some slight focaling. That they think is probably the location as to where the seizures may have been coming from. So all in all a little news that could be good in what has been a rough couple days. Blog to you soon if any updates come up.

Colby Drew

Well its back to blogging and I wish it was for some happier times. We're back at Mott Children's Hospital, second time this week. Thursday Colby slept almost all day, waking up only to feed a bit and go back to sleep. He didn't seem himself. Jess called U of M they said he could be just tired, maybe he picked up a virus, etc. They told us to watch for seizures, etc. Jess asked what to watch for in that case and hung up the phone. No less than 5 minutes later Colby had his first seizure. Jess was changing his diaper and he started to shake a bit. We called 911 and Livonia Fire Rescue came out. He seized for about a minute and stopped just before the ambulance arrived. He was doing fine at that point. We had him taken to UofM, to be with the docs that know him best. On his way to the hospital he started to have seizures again. When I arrived at the ER, he was seizing and they were trying to get IVs in him. It took 6-7 tries all over before they had to do some special IVs in his leg. He continued to have a seizure for about 2hrs total. It wasn't major shaking, more like a twitch. I have to say I wasn't sure what was going to happen and was preparing myself for the worst. Jess never left Colby's side giving him words of encouragement all the way thru. He does draw alot of attention let me tell you. All these people were gathering around in the ER. That to me is not a good thing persay, which was having me worry even more. But just as they were about to intubate him to help stop the seizures, he stopped seizing. Thank God! At that point they rushed him off for a CT scan of his head. He was breathing on his own at this point too which is a great sign. Colby was admitted to the PICU which is attached to the PCTU (this is where we were for the heart surgery) so we are very familiar with our surroundings. They are trying to figure out what caused him to have the seizure. They were thinking meningitis and were going to do a spinal tap but then decided against that. They noticed some swelling in his head thru the fontanel. They double checked the CT scan that they originally thought was fine and noticed some possible damage to lower back part of the brain. I say possible because we know very little right now. We are awaiting the nuerosurgeons to come in tomorrow morning and talk to us. Currently they are monitoring his brain through an EEG. This watches his brain waves through 26 electrodes placed on his head. We'll know alot more tomorrow.

Please keep Colby in your prayers, he really, really needs them right now. He is such a STRONG dude. All that he has gone thru in this past week is just amazing and we continue to remain positive. I'll update as much as I can to let you know what's going on.

Cooper's 2nd Birthday Cake

Press play - it is a video of our seven hour cake making experience!

Long time, no blog!

Colby, tube free!


The Brothers Hilling

A Colby close-up!

As George Costanza from Seinfled once said, "I'm Back Baby!" Well first let me say sorry! Ever since we stepped foot in the door its been a non stop whirl wind of diapers, feedings, medicine, pediatricians, cardiologists and very little sleep. We needed to do some serious Colby focusing and the blog is one of the things that ended up falling thru the cracks. So for those of you who were following religiously I'm really sorry. But it was all worth it, every bit, as Colby is doing awesome. He finally seems to be a normal baby. Feeding tube free, Colby is loving life. He's smiling, starting to coo and starting to get on track with all of his normal developmental milestones. He is doing really well with nursing and takes a bottle any time that is needed too. But he is currently not taking any supplements and having great weight gain. Last week he put on 9 ounces. He's up to 9 pounds 15 ounces. He's also growing in height as he just reached 24 inches. He started out at 7 pounds, 7 ounces and 21 inches. His incision his healing perfectly. It looks great. His incision did get slightly infected a couple weeks back but he got some antibiotics and it cleared right up. He also had a few sutures pop out that U of M had to pull out but nothing too major. We took him to the cardiologist on Friday and they said he was doing great. They took him off his two stomach medicines, Zantac and Reglan and left him on his two diaretics, Lasik and Aldactone. But he only has to be on those for about one more week. Then he'll be medicine free, finally. I'm waiting for U of M to give us honorary nursing degrees after all the meds we've given over the past month and a half. The cardiologists mentioned that Colby has a small heart murmur, but its nothing to really worry about as hopefully he'll grow out of it. If not a procedure would have to be done in the future but again its nothing to be concerned about right now.

Cooper is doing really well and has totally adapted to having his new brother home. He does great with him. He's always kissing him and trying to hug him, although its often that we are telling him "gentle, gentle" as Coop doesn't quite grasp the concept that Colby is a baby and not a tickle-me-elmo doll. :) Coop is talking more and more each day and likes to tell us "Baby Crying" when he hears Colby.

I'll be updating the blog on a regular basis, I promise, again I'm very sorry for the month and half break. Please keep checking for updates, thanks everyone!!

Hey Bartender, Colby Needs a Refill!

So this pic shows how Colby eats right now. Its the dreaded "NG Tube" or Nasogastric tube. If you're really into this, you can watch a how-to video on Nasogastric tube placement via YouTube. Yes Jess and I both learned how to do this and had to do it once before we left the hospital. It wasn't as bad as we thought but still not a pleasant thing to have to do to someone, especially a baby. Currently, Colby is sporting a 30 Day tube so he doesn't have to take it out for 30 days. The only way we will have to replace it is if he pulls it out, hence the band-aids on his face holding it in place. And let me tell ya, Colby is a regular Houdini when it comes to this tube, he did pull it out in the hospital a couple times, he's a sneaky guy. So we have socks on his hands so he can't grab it. When its time for Colby to grub, we take a small irrigation syringe and hook it up to the end of the ng tube. We take about 2CCs of air and push it through the tube via the syringe. Before we push out the air in the syringe we put our ear to his stomach, then we push out the air and listen for a "whoosh". When we hear the "whoosh" we know the tube is in the correct place. Then pull the air back out and we may procede with the feeding. We mix up a batch of his formula, heart defect babies need higher calorie formula. Then we warm it up and poor it into a feeding syringe. Its the large plastic tube hanging on the pole in this pic. Attached to the bottom of the syringe is a tube extension with a little piece that can stop the flow in the tube. We attach it to the pole via a velcro strap. Once its set with the formula and we've tested the tube placement, we hook Colby's NG tube to the plastic extension coming from the feeding syringe. Then we take the pump part of the feeding syringe and use that to get the formula flowing. The rest is done by gravity. If we hang it higher on the pole it moves faster, if we hang it lower, you get slower. Too fast, Colby pukes, too slow, you fall asleep watching it, so were always looking for that balance. Once he's done eating we disconnect the feeding syringe and clean it, then we push through about 2CCs of water through his ng tube to flush it, wait about 2 hrs and repeat. YUUMMMMY!

Home Away From Home

Here are some pics from moving day. It was a weird day. We were scared, excited, happy and sad all in one giant shot. Scared to be on our own after all this great care, excited to get home, happy to be leaving with our son on his way to good health and seeing Cooper soon and sad to leave some of the other families behind. Luckily one family was in the pctu waiting area and I was able to give them our email so we can hopefully stay in contact.

In the car and ready to roll!

Big Bird greeted us everyday on our way to the 5th floor, Sorry Big Bird, nothing personal, but I hope I never see you again!

Leaving the 5th floor.

Just leaving our room.

Colby says, ahhh did someone forget me?

Weekend At Colby's

Hey Everyone, Below are some pics of Colby from the past weekend while we we're still at the hospital. He was mugging for the camera in numerous poses.

Here he is during one of his few attempts at the bottle, he has told us he's not ready for that yet as shortly after this photo was taken some of that stuff in the bottle was later seen as some of that stuff on the blanket below the bottle. :)

Colby, shocked as he's told HE has to pay for the Survival Flight helicopter ride.

Colby sleeping next to the new helicopter his ride just paid for.

Night, night buddy

Mommy and me!

Welcome Home Colby

After 18 days between Providence Park, Survival Flight, Motts Pediatric Cardiovascular Thoraic Unit, open heart surgery and General Care on Motts 5 East, Jessica and I were able to welcome home our son. The ink is drying on the first chapter in Colby's brand new life story and what a crazy, scary, emotional, rollercoaster of a chapter it was. If you put a number of chapters together you get a story. April 15th, as I sat in the special care unit about 15 mins after Colby was born, I wondered how many chapters would be written in this life story and would this story end before it really began. But soon after these thoughts things began to change and within the next 24 hours we would meet some of the most incredible people I've ever been in contact with. Through their information and knowledge, these amazing people began to write the pages that were the "Heart" of this chapter. They overwhelmed us with any and all information, set our minds at ease, performed their jobs, and then cared their butts off! They set the tone for this first chapter and hopefully what will be an entire story. They took what could have been a tragic chapter and a short story and flipped it over into a chapter about Colby's strength, will and fight and a long and healthy life story. Also helping to write this chapter were all of you, our family and friends. Through everything and anything you did for us, all of the well wishes, texts, phone calls, visits, prayers, emails, messages, cards, generous gift cards for food, home cooked meals, dog watching, Coop watching, lawn mowing, house decorating, you helped us through. We wouldn't have been able to get through all of this without your support, THANK YOU SO MUCH!

We know Colby was mentioned in many churches throughout the area in the past couple weeks and we just wanted to say thank you. We also wanted to give a couple special thanks for a couple extra special prayers. To Jessica's cousin Chris, who happened to be on a fabulous trip over seas said a prayer for Colby at the Western Wall, or Wailing Wall as its often called, in Jerusalem. Also to our friends Randy and Cat who lit a candle for Colby at St. Patrick's Cathedral on their trip to New York. I also wanted to say thanks to our friends Brian and Kelly Syska who gave Colby a rosary blessed by Pope John Paul II. We kept that on his bed his entire stay.

Well we hope the next couple chapters of Colby's life story are pretty bland and normal, this one chapter was enough drama for an entire novel. Talk about hearts, I don't know if mine can take another episode like this one. I think everything happens for a reason and I don't know yet why this incident happened but I think someday I will. All I know is that when Colby is old enough to understand we'll look back on all this and make sure he knows how many people were behind him. I just saw a cheesy commercial for some medical tv show and the tagline for the show was "all patients deserve a hero", Colby had quite a few in the past few weeks.

Colby's Casa es UofM

The Big Cheese had an interesting day today he decided he didn't want his last chest tube and somehow thru Colby mind control made it inadvertently pop out. Jess was holding him and it just popped out. So that caused a little bit of frantic running around and nurse chaos, but all was well when it settled down. He still has it out as of 10:30p.m. and they'll give him ANOTHER chest x-ray tomorrow to see if the fluid level is fine, if its not they'll put one tube back in. He also had an echocardiogram to too. He's still in the same deal with his feedings, keeping some down and some not. Jess is staying the night again tonight and I'll be stepping back in tomorrow.

We found out today that Colby officially lives right here at the hospital, his official address is Colby, University of Michigan Hospital, Ann Arbor, Michigan. I always heard UofM wanted your first born child to be able to attend school here but I just assumed people were being facetious. THEY WERE SERIOUS! I love the U, but come on! Yeah its something to do with social security and stuff. We'll be moving into the Big House this weekend, I'll be having a house warming party May 3rd, Regrets Only :)

Coop is still at my parents having a good old time, getting over his small cold.

Colby is sleeping quietly, we'll be soon, pleasant dreams!

One Step Forward, One Step Back

Colby is still doing awesome except he went back to his good ole days of throwing up his feeds. This seems to happen when they attempt to feed him 55 CCs of formula every 3 hours. They're going back to 36 CCs every 2 hours, where he seems to tolerate them more. They're also going to try to make a decision on his final chest tube hopefully after tonight's shift, dependent on the output.

Interesting note, Colby threw up during American Idol's cast off show, I like to think it was his absolute disgust in the fact that Matt got booted or is his personal commentary on the sad state of our current entertainment options. Either way, Colby has spoken(barfed, actually)!

Jess stayed the night here last night and will again tonight, lets wish her luck that the alarm sounding meds pump that acts up every night keeping her awake is going to behave itself tonight. I went back to work today, it was nice to get back to some normalcy.

Cruising along!

Hey all, Colby is still crusing along, he's actually taken down his last feed without it coming back up. He's currently taking down his next feed and no signs of it coming back up yet, so we're keeping our fingers crossed. He is somewhat out of it as they gave him some medicine to...remove one of his chest tubes! Yup, he's one more tube down. One to go. The last shift his last remaining tube's output was 20 CCs so they'd like to see 5 CCs in one shift before removing it. So we're rooting for that. Some of the "normal" baby stuff is beginning to be metioned to us, hearing screening, circumcision, etc. So that's a relief too. We just found out Colby will need to be on the special formula he's currently taking for about 6 weeks. Its looking more and more like we may need to have him on the dreaded tube feed for a few weeks once he's home. I think we're gonna attempt to get him trying some bottle feeds here really soon, to see if he can take it.

I'll be heading back to work tomorrow as my time off is up. I took an extra day for today and will be back on the scene, tomorrow. It'll be nice to get back to work, some normal-ness, as opposed to all the craziness of the past couple weeks. Jess will be staying here at the hospital and I'll come over in the evening after work. Hopefully we won't have to deal with this situation too much longer. Once Colby comes home from the hospital I'll try to work something out so I can be home for a few more days to help out. Work has been so understanding with everything, I can't thank them enough.

Flew the Coop

Coop has been, well, cooped up alot lately, the poor little guy has been shuttled back and forth between grandparents and has done very well all things considered. They have this great playground on the roof of Motts and we took Coop up there the other day here are a few photos.

Colby Drew

Pics of our little man from last night.

ICU...C...U..Later

Colby loving life in his baby hospital gown! Hey look ma, no tubes! Except for the feeding one! :)

Colby sleeping before they removed his oxygen tube.

Colby's new bed space


The small room, you can see our neighbor's space too. We had to call the cops on them twice, once for a loud party and the other time because they wouldn't stay off our lawn.

Our space, you can see the couch we sleep on in the lower left.

That's right , we said C U Later to the ICU. Like I said before it was bitter sweet in numerous ways. Obvioulsy its great for Colby, its a big step. But its also nerve racking for the families. The care situation is night and day from the ICU. We haven't spent the night here since the Tuesday after surgery. But I stayed here last night, Jess will be staying here the rest of the week. You pretty much have to as you feel like the first line of defense if anything were to go wrong. The nurse has only two hands and can only be in one place at a time, so if Colby throws up, which he has been doing often, then we need to be there to help him and let the nurse know we need help. General care really, really gets you back to reality and prepares you for the road to going back home. I think any parent can attest to the fact that bringing a newborn home is scary enough, now adding this to the mix makes for even a more interesting transition. We're still about a week, give or take a day or two, from bringing the Big Cheese home. I'm terrified, you have all these issues to watch out for normally, and now we have a few more to throw in the mix. But hey it is what it is and we'll figure it out and in no time Colby should be crawling around like nothing ever happened.

The other strange feeling leaving the ICU was moving forward in this process while leaving some of the other families behind that we've forged a small bond with. Although they are just 500 ft away, it does seem like miles. I will say though that there is not a sense of guilt. Like I said in a previous post, there are congrats and well wishes from those same families and we just pray that they'll be joining us here soon. It is wild though, most of the people down here we know, so alot of us are still together. That is comforting in itself.

Colby is doing great, as Dr. Hirsch said this morning, heartwise, he's fabulous. His main issue is keeping his feeds down. He's throwing up after every feed, but the nurse practioner thinks it's because he still has some build up in his lungs from intubation. So the nurses are working to loosen that up and get it out of him and it'll be a process, but hopefully one that ends soon. He still has two small chest tubes and one may be out tomorrow. So he's getting more and more fiesty, crying and showing us he's bummed out, all good signs he wants outta here.

Our room is tiny and we share it with another family who's son just had his final surgery to repair his heart. Its definitely more private in here then in the ICU, but it's a give and take both ways, like I said before, it's bitter sweet.