Big things...

Hey Bubba,

So its been a day or two (or more) since we wrote last but you have kept us quite busy lately. I guess technically you haven't kept us busy directly but indirectly you are not only keeping mommy and daddy busy but you are keeping a lot of other people busy too. That's probably okay though, we have had all the months with nothing to do at all.... Wait....

So your mommy mentioned to you that we are trying to do all the things we need to in order to get you ready to get out of this joint and head home. The stuff that you have to do is pretty much finished now I think. You had a sleep study last week that will tell the doctors all the things they need to know about what your vent settings should be when you go home and whether or not you will need a rate to help you breathe when you sleep. We haven't heard the final verdict on that one but we should know something in the next day or two and get a better idea of what we are looking at for the long haul.

The other thing you had to do was test out your hearing aids. Now we don't have that part quite figured out yet but we are certainly getting there. The nice lady from audiology came by again and brought you your new molds so your hearing aids will stay in. Mommy and I have been trying to test them out and make them work but we don't quite have the hang of it yet. It seems like maybe you are hearing some things but we can't really tell if that is just us wanting you to hear us or if you actually are. Either way we are moving in the right direction. And to make it better, they look pretty cool too.

You may not have noticed it because its pretty small but check out the little blue thing behind your ear...

What else? Well you got to check out a couple places you have never been before as well. Last week your OT came in and decided it was time you see the floor. Most babies spend a lot of time on the floor so we don't really think about how important that can be for a little guy who has never been able to try it out. When daddy walked in from work one day last week he found you mommy and your OT just sitting down on the floor playing with your toys. You seemed pretty happy with yourself and even surprised the OT with just how much head control you have these days and how well you are learning to balance sitting up. Good work champ.

Check you out with your bad self. Hopefully this will just be the first of very many trips to the floor.

Then today your RT helped mommy and daddy take you somewhere else you have never been before. This one was an even bigger trip than the one to the floor.

We got you all loaded up in your new stroller and wheeled you out into the hall, around your unit, and then right out the door to the small patio outside. You were super super fussy when we were getting you ready to go outside but the minute mommy got you in that seat you were the happiest camper in the world. You really seemed to like being pushed around too. The motion of the stroller seemed to chill you right out and then the fresh air seemed to just make you wake up and be as happy as we have ever seen you. It was a big first for you but it was a pretty big deal for mommy and daddy too because it made the thought of you getting out of here so much more real. 

You also got to celebrate your first St. Patrick's Day this week. Even though it really wasn't intended to happen this way the name Connor Michael Logsdon is actually quite Irish, or so I was told repeatedly this weekend. All you need is an "O'something" in your name and you would practically be asked to guard someone's pot of gold. That was a pretty busy day for all of us actually. You and mommy did your normal morning thing while daddy went out and ran in the 5k to support the American Heart Association. When I got back you had just left mommy with an ENORMOUS surprise. She had you all dressed up in green and ready to party and you managed, somehow, to poop all over yourself. It went up your back, up your arm, on your legs, all over your clothes, even all over the bed. Luckily mommy got this awesome picture beforehand. 

The day got even busier when mommy and daddy both had things to do in the afternoon and you and Grandma spent some time together sporting your green apparel. She took extra good care of you and made sure that mommy and daddy didn't have to worry one bit while we were gone. Sounds like you two had a party but apparently that is a grandma thing.

And there is one last big thing that has happened this week but unfortunately I don't have any pictures of this one, yet. On Saturday morning your mommy and I went out looking for a few of the things we know you will need when you get out of here. We had to make sure we had blankets and clothes and little things, we are still working on trying to get that stuff together. Since you showed up early we weren't quite as prepared as we should have been. But the other thing we had to go try to find was a table or dresser of some sort for some of your stuff when we get to take you home. We went and looked a few places and finally found one we liked. As it turns out it matched the crib, changing table, and night stand that mommy also liked so you will never guess what happened... So you have some new furniture as Grandma and Grandpa's house waiting for us to put it together. It may not be super fancy but we liked it a lot and I think you will too. That was another big one for your mommy and daddy, its kind of like you are going to be coming home soon. 

So sorry for the time lapse but like I said we have had a few things going on. Now lets keep on trucking and get even more stuff done this week so we can get you out of here. I know a lot of people who are looking forward to you getting home so they can see you and there are even more people who are looking forward to being able to hold you one of these days. So get some rest now and try not to make too much of a fuss for your night nurse so we can all have a good day tomorrow. 

Oh, and here is one more picture of you starting to figure out how to hold on to the bright orange ball Gigi bought you while she was here, you seem to like it a lot and can't wait until you can get it in your mouth.

Your mommy and daddy love you Connor.

- Daddy

One foot in front of the other....

Hi little man,

Life is certainly different here in the TCC then that which we were so used to in the ICU.  The days here in the TCC seem to go by with rocket speed.  Sometimes that's because you are in a great mood and we are just having so much fun that the day disappears.  Other days it's because you are upset and we barely have time to step away from your crib to eat a quick meal.  Although some days may be better than others each day is a step forward.  A step closer to the ultimate goal of springing you from this place and taking you home.

The last week has probably been the least eventful for you as far as tests, labs, doctor visits, procedures and surgeries go.  In the TCC you have a nurse practictioner that comes and examines you every morning and then reports to the attending pulmonologist.  These nurse practictioner round with the doctor and a few other important people each morning but it's not nearly the parade of people you were used to spending your mornings with in the ICU.  Mommy is having a bit of an adjustment not hearing all your numbers each morning and knowing every detail of the minutes her and daddy aren't with you in the middle of the night.  After watching so many things so closely every day for five and a half months it's weird to think they only get checked once a week now but that's a good sign.

Thanks to all the great nurses and therapists in the ICU, mommy and daddy were already trained to do most of your care which they greatly encourage in the TCC.  Therefore we often go a few hours without seeing your nurse which is extremely strange to us but a great introduction to home.  The TCC does have an awesome monitoring system so someone is always watching your numbers and there is a camera on your crib so if you try any funny business the troops come running.  Mommy and daddy are working on finishing up our education with CPR training, vent training, and learning how to transport you.  We have met some great nurses, therapists, and educators here in the TCC who are experts on taking care of babies with trachs like you so before long mommy and daddy will know all the tricks.

Your big challenge of the week is continuing to wean off your sedation medication.  Every 3-4 days the doctors decrease a dose or spread out the timing of your medication.   This means that you have a rough day or two to adjust to the changes then a happy day or two before it's time for another change. I know this has to seem like a rough road buddy but it won't last forever.  If you can keep hanging in there we will be rid of those yucky medicines before you know it and that will be awesome.  Good thing you are the strongest little boy I know.  Not many people could handle this tricky process.

On a good note Grandma, Grandpa and Auntie Beth are back to visiting.  Grandma and Grandpa have been deemed germ free and cleared to see you again. I think you are pretty excited to see some other faces than just mommy and daddy and I know they are excited to be part of your days again.  It was all but killing them to stay away.  Mommy is sure glad to see everyone again. You have been flashing smiles at Grandma, listening to crazy Grandpa's stories and even flirting a little with Auntie Beth.  I also know that your Gigi and Granddad Rooster are planning a trip out to see you before long.  How exciting is that?  Connor you sure do have a great family.

Today has been one of your more fussy days and you have to be exhausted by this point.  Mommy and daddy just ate a late dinner in your room (that's right we can eat in here).  I hope you are able to get a good nights sleep and gear up for another day tomorrow.  Just keep putting one foot in front of the other little man and we'll make it to the finish line before long.

Mommy and daddy love you very much Connor.

-Mommy

And I was running....

Hey Buddy,

I just wanted to write you a quick note to tell you about something your daddy is going to be doing in support of you next weekend. There is a little 5k race here in Cincinnati every year that supports the American Heart Association and I have meant to run it more times than one. I have always come up with a reason not to though but this year that stops. This year I am going to get my butt out there and run. I know that a lot of your friends have been asking questions about what they can do to help you or donate to your cause and mommy and I are working on that right now (hopefully we will have some sort of account/trust/something set up this week) but this is one way that people can support heart health and heart research. I know a lot of people have some plans for fund raisers to support you specifically but this is something that will support the cause that you and all of your friends from the CICU (and many many more). So anyone who wants to come out and run with me or even just donate to your cause you can get more info here. http://cincinnati.kintera.org/faf/donorReg/donorPledge.asp?ievent=1024975&supId=null

Sorry its such a short note tonight but I promise there will be more come. Keep up the good work and the big smiles you have been sharing with mommy and I today.

We love you Connor.

- Daddy

It's the little things....

Hey Bubba,

Here we are having us a little boys time for the first time in a little while. Your mommy had to run out and pick up a few things so you and I are spending some quality time together on a sunny Saturday afternoon. Now quality time has come to mean a lot of things over the last several months. Sometimes quality time is cuddling in your boppy, sometimes its playing with your toys on daddy's lap, sometimes (like today) it means repeatedly putting your pacifier in your mouth as you do your best to fight off the sleep your body is telling you it needs. Oh, and I must not forget that sometimes (also like today) it means changing diapers that make my eyes water. Awesome.But all in all its nice to spend a little QT together even if it is just doing the little things that are part of your day.

In the last week a lot of things have changed for you, for all three of us really. The most significant one was obviously the big move out of the CICU that we had come to know as home. On Monday we came down here to the TCC (Transitional Care Center) and have been trying to settle into life here all week. Some days the settling has gone better than others but that is to be expected when such big changes are made I suppose. Your room is bigger and feels a little bit less like a hospital room. Your nurses and RTs are in here checking on you a lot less. Even the doctor visits seem to have slowed down quite a bit this week. All those things are signs of progress, steps in the direction of a life outside of Children's Hospital.

Some of the other changes that have been made this week include you getting off the big hospital ventilator and adjusted to the laptop ventilator (LTV) which is the one you will go home with. That has been a pretty quick switch and you seem to have handled it quite well so far. The doctors keep changing tiny little settings here and there to adjust your breathing support or the extra pressure going into your lungs or even the amount of time between the breaths that the vent gives you. All of these little changes seem to be helping you and overall I would say you seem much more comfortable breathing these days. Who knew such little things could do so much?

The doctors have also continued to wean you off your sedation medication, one itsy bitsy baby step at a time. They are basically attempting to take you off of them at a snail's pace, assuming the snail is moving in slow motion through molasses that is. But as usual the doctors seem to know best because even though the changes they are making seem so little to your mommy and I they have an affect on your little system. Every time they change something we see a day or so of the fussy Connor we saw months back and it scares everyone but like you have always done in the past, you show us you can handle it and get things back under control. Of course that happens on your schedule and not ours but that isn't new either. Since we are going to have a decent chunk of time here in the TCC I think maybe the little steps may be the best way to go.

Let's see, what else? You have spent some time on your tummy this week and will spend more time that way as we go forward because its good for you for a lot of reasons. You don't seem to like it much right now but I think that may change as you get used to it. Its all about the slow and easy approach. You have also gotten a new trach this week, well actually two new trach's. The first one was Tuesday and mommy put that one in with no sweat at all. The second one was on Thursday night and your friend Peter from the ENT department put that one in. He had to do it because your doctors up here decided you needed a bigger one. The one you had was a 3.0 trach and they said you were big enough now for a 3.5 trach. Now all that amounts to is 0.5 mm bigger but as the doctors explained it to us it is like going from breathing through a straw to breathing through a garden hose as far as you are concerned. Another little thing amounting to a lot.

I think that might be about it for the changes, at least that is all I can remember right now. Your mommy and I have had to get used to a few new things this week as well but they are more about us being so used to things up in the CICU that we felt comfortable with all the policies and procedures and people and down here we have to learn all those things again. Its not a bad thing but habits are not easily broken.

There is one last little thing I want to tell you about though, and it has nothing at all to do with medicine or the hospital. This week, despite the fact that it has been a good week for us and for you especially, has been kind of a draining week for your mommy and daddy. You have been trying to adjust to a new schedule and that hasn't been easy and therefore you have been fussy at different times and really unable to sleep as much as you normally would (and that makes anyone mad). So that means that mommy and I have spent a lot more time this week trying to calm you down (or put your pacifier back in your mouth) than we have been the last two weeks. That's tiring stuff and sometimes we get a little bit frustrated but we have found that there is one little thing that seems to fix it all. One little thing that makes all that frustration melt away and makes us happy again. And that my boy is your smile. Parents talk about it all the time but mommy and I are experiencing it first hand these days. We can be so "done with everything here" as your auntie Beth says but one little smile out of you and we are back in the right frame of mind.

Keep up the good work little man, we are awfully proud of you.

We love you Connor.

 - Daddy

Avoiding the Jinx.....

Hi buddy,

Mommy and daddy haven't written for the past few days because things have been pretty quiet but in a good way.  It seems that whenever we get on a streak like this and write an exciting blog about it things promptly go south.  We wanted to try and avoid the jinx this time so we decided to go on a writing hiatus.  But we can't stand it any longer we have to share the good news.

The end of last week and the weekend consisted of some housekeeping issues for you in the CICU.  You were able to get up to full feeds through your new GJ tube without a problem.  Then the doctors were able to tweak some of your ventilator settings so you weren't getting quite as much help.  Next we made a big leap by changing the two sleepy medicines that go through your IV to a form that can go into your G tube.  Everyone was pretty nervous that you wouldn't react well to this but as usual you surprised us all and sailed through it.  To be honest you were a little too sleepy so we had to lower the doses on both of them (one step closer on your weaning program).   The doctors also had to decrease the medicine they have been giving you to lower your heart rate not once but twice so your daily doses were cut in half (another check on the weaning plan).  There were a few other details that I won't bore you with but long story short Dr. Marino earned his check "waxing you to a shine" as he says.

The weekend was very quiet as far as visitors go.  Your Pappaw started a new job so he wasn't able to come up this weekend but he promises to be back just as soon as he can.  Uncle Scooter and Auntie Beth both had a little winter cold so they had to stay away.  In addition to all that your Grandma and Grandpa had to stay away because Grandma had been exposed to the flu and they didn't want to take the slightest chance of passing it to you even though she isn't sick.  See your Great Grandpa got REALLY sick really fast and had to be rushed to the hospital last week.  He is on a ventilator like you and just starting requiring some dialysis like you had after your heart surgery.  Turns out he has a bad case of the flu which his heart, lungs and kidneys aren't reacting well to.  Your Great Grandpa is one of the sweetest men in the world and your mommy sure loves him a lot.  When he was off the vent for a few hours the other day one of the first things he asked about was you.  Despite how rotten he must feel he is thinking and worrying about you.  I can't wait until the day you get to meet him.

Originally your Grandma said she wouldn't go visit your Great Grandpa so that she could still come here and help with you but mommy and daddy said that was silly.  For five plus months your Grandma has come to Children's hospital at least every other day (sometimes more) to be with you.   She is always willing to babysit so mommy and daddy can get out of the hospital no matter what day of the week it is or what time of day.  It means a lot to all of us that she spends so much of here time here keeping you, mommy and even daddy company.  So we promised her that although we would miss her a lot (and mommy sure does miss her during the days) that we could handle things here so she could be with Great Grandpa.  He needs her more than you do right now.  Thanks for being so well behaved so that Grandma doesn't worry.  We'll keep saying extra prayers that your Great Grandpa gets to feeling better soon.

Sunday mommy and daddy left you at the hospital with one of your great nurses so we could go get you a new stroller and car seat.  Pappaw gave you an awesome stroller/car seat combo months ago but since you will need to be on the ventilator we have to use a special stroller and the car seat that matches.  Luckily we hadn't put together the stroller from Pappaw (yeah for procrastination) so we were able to exchange it without much trouble.  I think you'll like the new stroller just as much if not more and it has a lot of different ways you can sit as you get older.  Thanks Pappaw for the new and improved ride.  When we got back to the hospital Sunday afternoon your nurse reported that you had been a good boy all day.  Thanks little man.  Then you started to cough up some yucky junk and mommy and daddy were worried you were starting with another infection.  Oh no....

Monday morning came and we got some GREAT news.  The doctors said they weren't worried about an infection and you were ready to make your grand exit out of the CICU.  Lucky for us the TCC had a bed available and all systems were a go.  Irony would have it that Dr. Connor was the attending so not only was he the doctor that admitted you to the ICU back in September but he was there to discharge you in March.  What a big day it was for everyone!  I don't know who was more excited; the doctors, nurses, therapists or us.  There were several volunteers to help with your parade from ICU to TCC.  You seemed pretty excited about the ride too.  So far you have survived your first day in your new room and seem to be adjusting well.  Mommy already misses some of the amazing people in the ICU but she's excited about all the new friends we're making down here.  Mommy has a lot more to say about the great people in the ICU but we'll save that for another note.  You are just about asleep so mommy and daddy are going to wrap things up and head out soon but good work avoiding the jinx little man.  Let's hope we're over the hump and our ICU days are in the past.  We are so proud of all the progress you have made and can't wait to see what you do next.

Mommy and daddy love you very much Connor.

-Mommy