What a week...

Hey Little Man,

So I have to start off by telling you that you managed to impress one of your doctors today. Normally during rounds you choose to throw some sort of fit and make enough noise with your alarms and your coughing to keep mommy from talking to the doctors much but today it was a different story. Today you slept right through most of the morning, including rounds. That didn't stop you from butting in however, you had to make sure you were heard. So, since you weren't awake to get your normal intra-rounds attention you did the only thing you could do to get a rise out of the staff as they tried in vain to give report on you, you farted. Not just once, oh no, and not quietly either. You blasted your diaper like you were trying to propel yourself out of your bed. At that point Dr. Marino had to stop rounds and make sure that every knew that you were officially a "little MAN". He is somewhat of a stoic character so managing to get such an animated reaction out of him was quite an accomplishment of yours. Hopefully going forward it won't take extremely audible bodily functions to animate a crowd but if that is what it takes there have been plenty of people in Hollywood who have made a decent living that way.

Now that the joke is over for a bit lets jump back a week and pick up where we left off in mommy's last note. A lot has been going on since then so there is plenty to catch you up on. First of all we had a meeting with a bunch of people who care a lot about you on Friday and they started helping mommy and daddy put together a plan to take better care of you. It isn't that we weren't taking great care of you before but now that you are getting older there are some things that we need to start doing to help you make progress on a daily basis and get ready for the real world when that time comes. One big thing is getting a few lists together: things you like and you don't like, things that make you mad and happy, things that you are working on right now, things that you can already do, and the people who you know and know you best. Those lists are going to be close to you from now on so that people will be able to help you out when you get a little bit upset.

Another big thing we learned that we should be doing for you is creating a schedule. It sounds weird to say that since pretty much every part of your life since the day you were born has been on some sort of schedule (hourly check-ups, scheduled medicines, daily x-rays, weekly bloodwork, etc.). The thing that the doctors, and even mommy and daddy this time, tend to forget though, is that you are getting older and you are going to start doing older kid things like sleeping through the night and taking regular naps. Well that won't work if we don't have you on a schedule, how would you know if it is day or night or when nap time should be? So we are trying (and buddy I am EMPHASIZING the word trying here) to build a schedule around your internal clock. One that won't change your current schedule too much but will get you used to being awake at certain times and getting your bath at certain times and even taking naps at certain times. You haven't made this easy so far but we will keep working on it because it seems to help when we can make it work.

Other than that Friday was a pretty quiet day. Saturday was too believe it or not. There was only a little bit of excitement when your nurse, one of your favorites these days I think, called mommy while she and daddy were in the cafeteria so daddy could eat lunch and toldl her that you had a big surprise for her. Now I know we have told you that every time we get a call with a Children's Hospital extension on it we freak out but this time it was apparently some good news and we needed to come see something. We were a little bit apprehensive when we walked into your room but you will never believe what we saw...

Yep, that is you. Yep, you are on your belly. Yep, you liked it. Now you didn't like it for too long but you seemed pretty content laying there like that. Another first for you little guy.

Your Pappaw came up to see you. He hasn't been here in a few weeks because the weather has been pretty bad but he came up and spent a good chunk of the day with the three of us and even got to hold you and play with you for a little while. He was so impressed with how big you have gotten and how good you looked and I think he enjoyed playing with you more than anything else.

I mean yeah, that look you are giving the camera might be a "what in the heck is this guy talking about?" look but you sure did seem to enjoy it when he was playing with you. I think you two had a pretty good time together.

After that uncle Scooter and auntie Beth came by for a little while and brought mommy some lunch. As usual you seemed completely enamored with auntie Beth. I think perhaps we should get a cardboard cutout of her with a recording of her voice for times when you seem inconsolable because it doesn't seem to matter much what kind of mood you are in when she shows up because you chill out for her. Now after that you were getting pretty worn out so we did some trach care and got you ready for a nap. You were certainly agreeable to that after your trach care and a little bit of your favorite sleep medicine.

After that mommy and daddy went to do our weekend errands and left you to sleep the night away, which apparently you did. You slept all night and were so good for your nurse that she made sure to tell us about it several times. Then, bright and very early, Sunday morning you awoke to Grandpa in your room all geared up to spend some time with you. Apparently the two of you had quite a time. You spent three hours in his lap and the only time the nurse had to come in was when she heard "noises she had never heard before" coming from your room. She was worried maybe something was wrong but as it turned out it was just Grandpa making faces at you and doing his best pirate imitation to keep you entertained. Now Grandpa couldn't stay all day because he had some things to attend to that afternoon but your Grandma came down and relieved him so your mommy and I could try to get a few things done. She spent most of the afternoon with you and the two of you had quite a fun time as well. She didn't make any crazy noises to scare the nurses but it sounds like you were entertained none the less.

By the time mommy and I got back to see you Sunday afternoon you were already zonked out and ready for bed. We wanted to see you but since you had been up so much that day and were so tired we decided it would be best to let you sleep. And sleep you did, again. All night long you slept quietly and you had the same nurse as the night before so she was quite impressed. I don't know if that is going to be your new thing or if maybe she had some sort of magic touch that kept you happy but there is an old saying about a gift horse's mouth that I try to remember at times like these.

All of that sleep was a good thing though, because you had to get up early on Monday for a big day. You were due for your g-tube to be changed to a g/j-tube instead. Now the doctors had told mommy and daddy that you were going to be headed down for your procedure sometime Monday afternoon but while daddy was driving to do some work at seven in the morning one of the doctors called to say you were going down in thirty minutes and they needed consent. I was a bit flustered but agreed and let mommy know it was go time. Like the true trooper that she is your mommy rushed around and ran over to the hospital right away so she would be here when you went down to surgery. Afterwards she talked to the doctors and they said that things went well. Your stomach and the placement of the tube wasn't ideal but as usual you were a champion and breezed right though the procedure. You didn't even get any dopey medicine, all you needed was a little Tylenol. Now that's tough if you ask me.

You had a good rest of the day that day and cuddled with mommy and daddy quite a bit as the day went on.

You may not have needed any extra medicine but that didn't mean you weren't worn out. After all it was still a surgery. But since then you have been doing really well. You have been happier than we have seen you in days and today you are even back to smiling like you did before your trach. I cannot tell you how happy it makes your mommy when you smile like that but I probably don't need to, I know you can see it and hear it in her voice when you do it.

Yesterday was a big day too, but more because mommy and daddy had to get a lot of things done. To quickly recap I'll tell you this... A couple weeks ago a fire truck decided to ignore a red light and took out daddy's car and after three weeks of looking we finally found one and I think this one will fit you even better than the last one. Also, there has been some pretty ugly stuff going on for your daddy and it is finally OVER. Yesterday I had to sign some paperwork and send some emails while we were out but that weight is off our shoulders at last. Mommy and I also found you a great new seat and a new toy with an awesome mirror on it while we were out trying to find some of the necessities for your trip down to the transitional unit (whenever that may happen). We have to get you a stroller and a car seat and a few other essentials so we are trying to get that all wrapped up.

It is only Wednesday but its been a long week for us already. Now you couldn't tell that by looking at you today....

You are chilled out in your new lounge chair playing with your guys. Some days you just make it look too easy.

Keep on trucking buddy, keep on trucking. Your mommy and your daddy are ever so proud of you.

We love you Connor.

 - Daddy

The not so easy path...

Hi little man,

Somehow I always start the week off thinking "this will be a quiet week" or "this will be the week we establish a little more of a routine."  Since neither of those statements have been true with the exception of maybe one week in almost five months you would think I would just give it up but I guess I'm an eternal optimist.  Unfortunately this week is playing out to be another week like so many we've endured lately, complicated and long. I think it's safe to say that no one will EVER make the comment that you have taken the easy road.  No not Connor.  You travel a very windy and twisted path with lots of dead ends but the important point is that you keep trucking along.

You started the week off a little cranky due to the doctors plan to push on with weaning some of your sedation medication.  Daddy and I hate to see you go through the withdrawal but we know it needs to happen and we would love for you to kick that yucky medicine once and for all.  We were making some slow but steady progress in the way of that plan thanks to a lot of thought from the pharmacist, doctors, nurses and input from mommy and daddy.  Hang in there little buddy you are working through this like a champ and we're so proud of you.  The doctors had also restarted you milkshakes and you seemed to tolerating that just fine.

Then came Tuesday...  You had a routine bronch scheduled to check out things since it had been a month from your trach placement (can you believe that's already been a month).  Mommy waited in the surgery area as she has so many times although she thought it was kind of silly because what would the doctors possibly have to say except that all was well.  The pulmonologist and ENT do this procedure together so they both were waiting to talk to mommy when you were done.  The moment they said "let's start with the good news" mommy knew that meant there had to be bad news.

The good news was that your trach was in perfect position and your lungs looked clean and clear.  The left side of your nose was open and didn't need any work this time.  Also there wasn't much compression on the left side of your lungs from your heart which is a concern with most kiddos that have the heart surgery you had.  The bad news was two fold.

First off the back of your throat was very red and irritated which the doctors said was a classic sign of reflux.  They suctioned a good amount of stuff out of your nose and throat and then followed it down to your stomach where a bunch more of that junk was sitting.  The pulmonologist decided that this junk was bile which would mean it's coming from your intestines.  Now this comes as a surprise since we had ruled out reflux after the surgery they did with the placement your g-tube but what's more of a "head scratcher" as one of the doctors put it is how this is coming all the way from your intestines and we aren't seeing any of your milk coming up.  Yesterday you had an upper GI study which showed you were definitely refluxing but not necessarily where it's originating from.  We have some specialists on the case to determine what the next move will be.  It sounds like the possibility of some more tests with the most likely outcome being a feeding tube that goes straight into your intestines rather than just your stomach.  Don't get too nervous buddy because they promise this isn't a huge procedure just a bit of a bummer because it means we will have to feed you continuously rather than during windows of time like we were before.  Let's hope that we get this straightened out soon so we can help your throat feel better and pump you with more milkshakes.

The second part of your "routine" check that showed some not so routine results involved your lungs.  We know that you have what they call laryngeal malacia which means your upper airway is floppy and collapses on itself when you try and breath.  This is why you had to get your trach, to bypass the problem.  You have had at least five other bronchs before this one each of which has confirmed that the rest of your other airway showed no problems.  That being said the doctors were pretty sure that once you had the trach and the upper airway problem was bypassed that you would be breathing well and shouldn't need the vent.  On Tuesday the doctor looked down in your lungs and saw something no one else had seen.  He said it was pretty obvious that you had what they call bronchial malacia (at least on the right side).  This means that the tubes going inside your lungs (bronchi) are floppy and instead of staying wide open for the air to come and go they get narrow and collapse.  Mommy was extremely confused as to why we hadn't found this before but apparently the doctor who did this bronch is the best in the country and often finds stuff other doctors might not see.  Mommy and daddy are pretty sad about this piece of information because it means there's a much higher chance that you will need the vent to help keep your airways open for a while.  This is something you should ultimately outgrow but it may take quite a while.

In addition to the surprises of Tuesday's procedure you got a little fever and the doctors sent away more cultures.  We were all certain that they wouldn't show anything since they usually don't but today the results showed some infection so back on antibiotics we go.  Despite all of these hurdles you continue to push forward.  In the past three days you have figured out how to suck your thumb and you seem pretty proud of it.  I have to admit it's pretty adorable even though it may still need some perfecting.  You also have figured out how to grab the handle on your pacifier and pull it out of your mouth for which you get a little angry at yourself from time to time.  Today you pulled the paci out, kept it in your hand and then put it back in your mouth.  I'd like to think you planned it that way but to be honest I think you got lucky.  Your little hands are working more vigorously than ever and it's pretty cool to watch you explore new things.  Keep up the awesome work little man.  We need to perfect those little hand movements for sign language as you get older buddy .  Another exciting thing happened today.  The audiologist came and fit you for your first hearing aide.  They say it may take as little as two weeks to get back and then we can start trying it out.  What an adventure that will be.

Despite a rough week you continue to be the light of our life.  When mommy and daddy think we may have reached a point when we just can't take anymore we follow your lead and realize we can.  You make us smile even in dark times.  You prove that we are all stronger than we think.  Our little family has been through a lot in the past five months but thankfully we have each other.  So onward we press down the not so easy path.

We love you Connor.
-Mommy

Slow and easy...

Hey Buddy,

Well here we are again, you and me, chillin' in the room together while you take a little napsky. It was recently brought to my attention that we haven't written you a note in a couple days so perhaps its time we catch up on some of the really exciting things that have been going on. It has been almost four days since your last note so there has got to be tons of great stuff to talk about.

About that.... Its actually been a pretty quiet week this week. Dr. Ilias has done a fantastic job of getting you back on track and moving forward again. You are starting back with your milkshakes, your sedation is coming down again, you are back to doing your physical therapy and occupational therapy, you are even in line to have someone come see you for some hearing aids. But as far as anything much actually happening this week, well, there hasn't been much to tell.

You have had some pretty quiet days and nights and the doctors have been cautiously optimistic that maybe they have gotten you over whatever hill you were fighting to climb the week before. We still don't have any clear picture of what was going on with you and your skyrocketing heart rate but whatever it was seems to either be gone or under control now. Mommy and I have a theory that you just wanted to send Dr. Ilias home with one less thing to worry about so you cleaned up your act for him. He has saved the day a few times so I think that is a pretty fair thing to do. How about a little less drama in the build up next time?

As part of your less angry state this week we have been introducing some new toys to your bed. You now have a glow worm courtesy of Grandma and a slew of other toys that you have been able to grab on to and even stick in your mouth. Who knew we would be so excited about you grabbing things and slobbering on them? Certainly not I, but according to your OT friend Julie that is a pretty big deal and you are doing a great job of it. So that means we are going to keep bringing in more toys and let you get a taste of all of them. (See what I did there?)

Mommy and I have been trying to get some of the the things floating around in the rest of our lives put into some kind of order so that when the day comes for you to get out of here we won't be scrambling. So that means we spent a little while away yesterday and this morning as we unpacked and repacked some of the stuff piled into boxes in Grandma and Grandpa's basement. We may seem like a completely disorganized mess right now but I promise we will get it together one of these days buddy. We finally have a bed for you to sleep in, we may have a line on a changing table too so that could be exciting I guess. Here again I ask "who knew....". Now we have to go through the stuff that we bought for the first 6 months of your life and rethink what we need and don't need because so much of that stuff just isn't going to fit or work anymore. Guess that means we are going to have to go back to those baby stores. All I can say is yikes.

But for now lets not worry about any of that stuff. Now you just sleep and keep on growing. The docs say that growing is the single best thing you can do for your health right now and I am proud to say you are back to doing that again. Hopefully no more hiccups and this time you can keep the weight you gain.

Mommy and daddy are so proud of you Connor. We probably say it a lot but we are amazed at how you seem to be able to just keep on going and fighting through just about anything. You are pretty tough if I do say so myself.

We love you Connor.

 - Daddy

Where to start...

Bubba,

The last five days since our last note have been some of the most intense days of your short life, and some of the most intense of your mommy and daddy's slightly longer lives. But where do we start with this little tale? Do we start on Saturday when things got really bad for the first time? Or do we start on Thursday when your uncontrollable heart rate kept us from moving to the TCC? Do we start a week or two ago when we start talking about the TCC and you clearly decided that you weren't ready for all that? Since I have only so much patience for recounting the bad times I will start where your mommy left off on Saturday.

Saturday was a LONG day. Your heart rate was up and you were mostly inconsolable the entire day. We spent periods of time thinking maybe it had passed and we were on the upswing but just as soon as your mommy or I would walk away from you and try to sit down and rest we would look up to see your monitors flashing and your hands flailing. After mommy wrote her note to you we finally decided we better try to get some sleep because it seemed like there was going to be no slowing you down when you woke back up. That was the latest we had been at the hospital in a long time.

Sunday morning I got up and came over here early to spend some time with you and let mommy rest a little bit. She does so much by being here every morning with you that I like to make sure she gets a morning or two when she can relax and stay in bed a little longer or even just take time drying her hair without having to rush over here to check on you. During our morning Dr. Marino came in and wanted to talk about some of the plans for you based on what had happened during the day Saturday and over night Saturday night. Turns out you weren't much better for your nurse Saturday night than you were for us Saturday during the day. Not only were we there late but we probably talked to your night nurse three or four times in the middle of the night too. At the end of the night she finally had to give you a dose of your serious sleepy medicine.

That stuff has always knocked you out cold. But on Sunday you had other plans. You did nap for a little while and you did calm down a bit but your heart rate, even in a dead sleep, wouldn't drop below 140 or 150. You normally pitter patter around 90 when you are sleeping by the way. So the day started with Dr. Marino and I talking about some of the things that could be going on to get you so worked up. We went through system after system, trying to figure out something that would not only agitate you but keep your heart rate up so high even when you slept. He ordered a lot of tests, he looked into everything he could. We found nothing. The day continued and as it did your heart rate continued to rise.

Your grandma came to visit for a while and you weren't completely upset while she was here so that little stint of time was nice. Shortly after Grandma left you decided it was time to get some attention. For the first time I can remember your mommy and I almost lost our tempers and started screaming for doctors. You were so upset and your heart rate wouldn't stop climbing. We tried and tried to do everything we could to get it down but nothing worked. No amount of medicine and no amount of soothing had even the slightest impact on you. Finally, after over an hour of your heart rate fluctuating between 180 and 200+, we saw Dr. Morales in the hall and waved him in. He looked you up and down and ordered some tests himself but unfortunately couldn't do anything to make things better.

It wasn't until a few minutes later that the fellow on duty for the night finally made it in your room to see you. At that point you were bright red and moving every part of your body in a different direction like a dog shaking after a bath. Your heart rate touched 210 a couple times and she finally ordered the serious medicine again. This time with an extra shot of some sedation to tide you over until the heavy stuff kicked in. After an hour you were finally calm. The plan for the remainder of the evening was to give you the heavy stuff every four hours in an attempt to get your heart rate down and keep it down over night. The good news is that it did keep you calm over night.

The bad news is that the heavy medicine you were receiving is not very good for you and should not be given for long periods of time. The next problem was going to be to determine how to keep you from going through the same cycle over and over again. Dr. Ilias is up to bat this week so it was his turn Monday morning to take a swing at the curve ball that struck out Dr. Marino over the weekend. Dr. Ilias started the day by talking to mommy and I and explaining his plan for the week in detail to make sure we were in agreement with it before he told his team how they were going to proceed. We agreed with everything he said and put our trust in him to do what he thought was best.

He has started you on new medicine, then took it away, then started you on another one, then upped that one, and now he is backing another one down that you have been on for a while. We got a few extra pictures of your heart and your stomach and your chest and all kinds of stuff to check on those. We had doctors from all over the hospital come to see you and one by one they told us they couldn't find anything that would cause your agitation. It wasn't that mommy and I wanted the doctors to find something wrong but we wanted so badly to be able to start helping you with whatever it was that was driving you nuts. But the search has been fruitless so far.

You have had a better day today, one that I would call a good day (relative to the past week for sure). We aren't quite sure yet what it is that has helped you so much the last twenty-four hours but we are hoping that whatever it is keeps on helping. Last week we wanted to know the answer to this riddle, this week we just want the game to end whether we know the answer or not. As long as you can get back to being healthy and happy and moving forward we will be fine with not knowing what happened last week.

So here at the end of our note we have to ask ourselves again, "where do we start?". Not what part of the story do we tell first but how far back have we come in the last week and where do we start when it comes to trying to make progress again. We have lost a lot of ground in the last four or five days, many many steps backward, but hopefully sometime this week we can figure out either what has been going on or, if we can't figure that out, how to get past this and make progress in spite of it. I don't like to make things sound gloomy but these last several days have been some very very dark ones and a little light, no matter its source, would go a long way right now. So keep fighting buddy, keep up the good work, and we will keep doing everything we can to help you.

Mommy and I love you Connor.

- Daddy

P.S. it has been brought to my attention that I have not been very good about posting pictures lately and your fans are requesting that this trend change. so here you go.

In case the nurses forget who you are...

Mommy needed you in red this week...

"This is what I think of your pictures..."

So close yet so far...

Hi little buddy,

Thursday morning started off pretty rough for mommy.  She had a pretty bad feeling but assumed it was just because she was a little nervous about your big move out of the ICU.  With some words of encouragement over the phone from your daddy I headed to the hospital and geared up for the day.  You were resting peacefully when I walked in and the nurse said you had a pretty quiet night.  The doctors rounded on you early and were joined by your new doctors as part of the "hand off."  Rounds ended with Dr. Marino hugging mommy and saying he was really excited for you but kind of sad for himself because he was going to miss his little buddy.  Mommy and several of the team members got a little teary eyed.  As usual Grandma was here to help mommy and we packed up all your goodies and waited for the green light.

Within five minutes you were red faced and not happy.  Your heart rate started climbing and we all assumed this was a Connor fit.  Some the nurses even joked it was your way of rebelling against the move.  However it felt like a little more than a fit.  Lately mommy has gotten pretty good at finding out why you are upset (and to your credit there is usually a reason) and fixing it.  It may take a little while but between mommy, daddy, grandma, the nurses and the respiratory therapists and we are typically able to settle things down and move on with your day.  Thursday that wasn't the case.  Mommy tried EVERYTHING including some of your favorite medicine.   It was about time to move when mommy really felt like something was wrong and got pretty worried.  The nurses could tell I was upset and went to get Dr. Marino.  

Dr. Marino is a great guy and ordered some tests to check everything out before you made your grand exit.  He said he wasn't too worried but wanted to make sure you were in tip top shape (and to be honest I think he wanted to help mommy feel better).  Turns out your belly x-ray showed what looked like a  possible blockage.  Your little heart rate stayed up decently high the rest of the afternoon even when you were sleeping.  Mommy went downstairs to take a little break with her good friend Steph and daddy decided to give you a bath.  Shortly into your routine of a bath, g-tube care, and trach care things started moving and you filled your diaper.  Daddy said you were instantly a happy man and your heart rate dropped back down within minutes.  You were smiling and playing and the follow-up x-ray showed all was well in your belly.  

Mommy and daddy went to bed Thursday night thinking we were in the clear and would probably be moving on Friday.  Friday morning mommy arrived at the hospital as usual and Dr. Marino met me in your room almost instantly.  He said the morning x-ray showed what could be some air in your intestines (the fancy word for that is pneumotosis).  He wasn't convinced that it was truly the case (in fact he felt very strongly that it wasn't) but the radiologist said she couldn't rule it out so on the report it went.  By reporting that they have to follow a protocol that includes holding your feeds for a week and give you antibiotics.  That means no move to the TCC (transitional care center) and no milkshakes for you.  Big time bummer.  

Friday went off without much activity and I think everyone was ok with that.  You were happy, calm and full of smiles.  Several of your favorite nurses and therapists stopped by to say they were glad to see you but sorry we weren't able to move forward.  Grandma helped give you a good scrub down before she headed out for the day and you were quiet enough at night that mommy and daddy were able to go have some dinner with Uncle Scooter and Auntie Beth.  We will certainly chalk Friday up as a good day.

Today on the other hand hasn't been your best day.  You have been pretty upset and your little heart rate pumping away.  You haven't been exactly mad since early this morning but you can't seem to be still for more than a minute.  We thought for sure that after Pappaw played with you and Auntie Beth gave you a quick bath that you would crash but as usual you proved us wrong.  After being awake and moving for almost all of the past seven hours Dr. Marino said enough already and gave you an extra dose of medicine.  Being the stubborn boy you are it barely slowed you down so that's right he gave you another.  Believe it or not that didn't do the trick so he threw a third one your way.   I hate to see you get all that medicine but I know that your heart rate needs to slow down and you desperately need some rest.  Things are finally starting to settle out now and I imagine that you are on your way to a long visit in sleepy town. 

As much as we want you to move forward and out of the ICU we are very thankful that if you were going to have troubles it happened here where the doctors know you like the back of their hands.  We feel very blessed to be surrounded by such amazing people who are so invested in our little boy.  There is a saying that mommy and daddy have been using for a while but it's become pretty mainstream here in the ICU after this week.  It's called "Connor Time."  We will move forward, out of ICU, down to TCC, and eventually home all in "Connor Time."  Rest now little man, you deserve it.  I pray you have lots of peaceful dreams and recoup from whatever has been troubling you all day. 

Here's a picture of you from earlier today

A cute one from the other day

Mommy and daddy love you more than ever.

XOXO

-Mommy