Hey there little man,
Sounds like today has been a pretty quiet day again. I wasn't here for the first part of it but mommy was and she said you were pretty content all morning with only a little bit of a fit this afternoon when they had to do a little suctioning to clear you out some. You and she had some play time and you had some nap time and you are using all this sleep to get back on the growing schedule you were on before all this stuff with your nose started a few weeks back. All in all good stuff.
Then this afternoon daddy came in and got to spend about three-point-six seconds with you before you threw your first of a few fits. These weren't terrible fits, they were small and centered around the gunk in your throat that you just couldn't quite get out. Once I helped you with a little suctioning you calmed down again and we went on our merry way, me to my laptop and you to your naps. Of course it wasn't long before I was back over by you rubbing on your little head and patting your belly as you slept. I really wanted to just crawl in that tiny bed with you and take a nap but I'm fairly certain that wouldn't have ended well for either of us. I settled for resting my head on the bed next to you for a while, and it was fantastic.
Then, after quite a while of quiet you did have what I would have to call one of your episodes. You started to cough a bit and then you started to gag and then you turned purple in a fit of rage. I don't think you were mad about anything except for the fact that you wanted to get that stuff out of your throat and you just couldn't. This time daddy's help wasn't enough so your nurse had to put a catheter down your nose and pull out some nasty stuff (that was super thick) so you could breathe. Even though you needed it you were NOT happy about it.
Your heart rate went to the 190's for the first time in a long time and you were flailing about, trying everything you could to get the tubes out and all of us to leave you alone. I tried everything I could think of, from picking you up to patting your chest to rubbing your forehead, but nothing was going to soothe you. Well, nothing except that dose of medicine the nurse gave you. Shortly after that you were back to sound asleep and dreaming. You did open your eyes again for just a moment or two when your new night nurse came in a bit ago (you have had her take care of you before and she does a great job) but I think that was just to get a little flirting in. You sneaky little guy you.
So now we are trying to figure out what exactly is going on with your little nose and your throat. The doctors have been in and out since daddy got here and even Dr. Morales stopped us in the hall a little bit ago to talk about what is going on and what kind of steps we need to take to get you better. There are several options out there but we are going to have to take this one day at a time to let the doctors and their fancy tests determine what route will help you the most. I think we have all given in to the fact that this is going to happen on your timeline and no one else's so we may as well take our time.
It does sound more and more like you will be getting a little tube in your belly to help us feed you though. We have been doing a little bit of reading about it and found that it may be a good idea for you to have one even if we can get you to feed on your own. You are going to need a lot of extra calories in the upcoming months to get you growing so if that makes it easier then that is what we may have to do. Mommy and daddy have realized that even though it may not be ideal it may be what is best and that means we are on board with it. But with this route comes more testing and more questions so try not to get too frustrated with us in the next few days as we try to get everything in order for this next big step.
But for tonight you have nothing more to do than try and sleep. Hopefully the "gurgle gurgle" in the back of your throat won't wake you up tonight but even if it does hopefully it won't be for long. Keep on trucking little man, you are making big strides every day, even when the rest of us can't see them I know you are. Every day is a victory buddy, every day. So sweet dreams little man, sleep tight.
I love you Connor.
- Daddy
Wednesday, December 5, 2012
Staying the course....
Hello there little buddy,
Mommy and daddy realized as we were laying in bed last night that we didn't write you a note. Sorry but we decided not to get back up to write it so I'm writing you this morning. You and I just had a long play session and now you are napping pretty hard. You sure do love looking at the new mobile on your bed while you whirl your arms and legs around. Fun times for a little guy. I hope you get a good nap in so you are up for therapy and more play time later.
Just as you feel asleep the doctors came by and rounded. They didn't have much to say about you which is a good thing. They continue to decrease those medicines that keep you calm since you seem to be able to do that more on your own now. Great work little man. I'm not saying I blame you for throwing a fit here or there but it's certainly nice to see less and less of them. The doctors also upped what they call your "dosing weight." This means that you have gained weight and risen to the next level so when they add new medicines they have to use a bigger dose for them to work. This is a great thing because it means that not only have gained weight but you have maintained it. Awesome! We'll keep the milkshakes coming if you keep growing little guy.
You are still bothered by that gunk in your nose and the back of your throat but I'm sure I don't have to remind you of that. It's obvious you've gotten stronger because you can cough like a champ now it's just a matter of sucking it out of your mouth once you get it up. The doctors are trying a new medicine which has a fifty fifty shot at decreasing that gunk. The alternative to decreasing it is making it thicker which would be a problem so mommy and daddy are saying a few extra prayers that this medicine does the trick. To be honest I bet if we could get that pesky gunk under control we would be cruising through the next stages of your recovery.
For now we will just stay the course and work on our slow and steady progress. Keep up all the hard work you have been doing to heal and grow. Mommy and daddy are very impressed by you and your determination. Thanks for reminding us to be patient and have faith. You are truly an amazing miracle Connor. I feel very lucky to be your Mommy.
I love you,
Mommy
Mommy and daddy realized as we were laying in bed last night that we didn't write you a note. Sorry but we decided not to get back up to write it so I'm writing you this morning. You and I just had a long play session and now you are napping pretty hard. You sure do love looking at the new mobile on your bed while you whirl your arms and legs around. Fun times for a little guy. I hope you get a good nap in so you are up for therapy and more play time later.
Just as you feel asleep the doctors came by and rounded. They didn't have much to say about you which is a good thing. They continue to decrease those medicines that keep you calm since you seem to be able to do that more on your own now. Great work little man. I'm not saying I blame you for throwing a fit here or there but it's certainly nice to see less and less of them. The doctors also upped what they call your "dosing weight." This means that you have gained weight and risen to the next level so when they add new medicines they have to use a bigger dose for them to work. This is a great thing because it means that not only have gained weight but you have maintained it. Awesome! We'll keep the milkshakes coming if you keep growing little guy.
You are still bothered by that gunk in your nose and the back of your throat but I'm sure I don't have to remind you of that. It's obvious you've gotten stronger because you can cough like a champ now it's just a matter of sucking it out of your mouth once you get it up. The doctors are trying a new medicine which has a fifty fifty shot at decreasing that gunk. The alternative to decreasing it is making it thicker which would be a problem so mommy and daddy are saying a few extra prayers that this medicine does the trick. To be honest I bet if we could get that pesky gunk under control we would be cruising through the next stages of your recovery.
For now we will just stay the course and work on our slow and steady progress. Keep up all the hard work you have been doing to heal and grow. Mommy and daddy are very impressed by you and your determination. Thanks for reminding us to be patient and have faith. You are truly an amazing miracle Connor. I feel very lucky to be your Mommy.
I love you,
Mommy
Monday, December 3, 2012
Snot Rocket...
Connor,
Hey there little buddy. I know mommy wrote you a note this morning but I wanted to write you a little one tonight as well since we didn't get one to you yesterday. Like mommy said, she and I went out to meet some of our friends (and your biggest fans) yesterday so we could confirm that there is indeed life outside Children's Hospital. There were strange things out there, like cars, and rain, and puppy dogs. I don't know about that place.
But we are back today, here with you and having a party as always. Actually you have been sleeping the majority of the afternoon and evening. You had some therapy this morning that wore you out and then you crashed for many many hours. It wasn't until mommy and daddy decided to go to dinner that you woke up a little (funny how that sort of thing happens isn't it?) and decided to make a little bit of a mess on yourself. It wasn't terrible but it was kind of gross, what with gooey stuff coming out of both ends. I'll spare you the gory details but lets say it wasn't pretty.
However we got you all cleaned up and a little bit of medicine got you all calmed down and ready for a nap while mommy and daddy had some dinner. It wasn't long before you were back up and ready to go again though. We got back from dinner and found you wide awake and watching your mobile like it held the winning lottery numbers in its grasp. It didn't, but that didn't deter you. What did deter you however, was the gunky stuff that has been hanging out in the back of your throat and your nose. Seems like that stuff won't go away and it sure does make it difficult for you to do all this breathing on your own with it there all the time.
So your counter to that is to try and get rid of it, just like you are supposed to. You cough. The only problem is sometimes when you cough you get so worked up that you start squeezing your belly and coughing at the same time making you gag a little. Then comes the fireworks, almost literally. You have given new meaning to the term "snot rocket" the last few days, and ESPECIALLY today. Daddy had just finished wrapping you up for a nap when I heard you cough and I turned around just in time to see you shoot some stuff out your nose in a high arching line across your bed. If it weren't for the fact that you were quickly headed into a full on fit I would have stepped back and admired your form. That was indeed a good shot son.
But for the time being I think we should maybe leave that to the professionals, like athletes or old people. You don't need to be doing that and getting yourself all worked up no matter how cool it may seem right now. So if we can agree to no more snot rockets tonight then I think it is time to turn in and get some sleep. I am sure we will have some sort of adventures tomorrow but until then lets rest up. Sweet dreams little man.
We love you Connor.
- Daddy
Hey there little buddy. I know mommy wrote you a note this morning but I wanted to write you a little one tonight as well since we didn't get one to you yesterday. Like mommy said, she and I went out to meet some of our friends (and your biggest fans) yesterday so we could confirm that there is indeed life outside Children's Hospital. There were strange things out there, like cars, and rain, and puppy dogs. I don't know about that place.
But we are back today, here with you and having a party as always. Actually you have been sleeping the majority of the afternoon and evening. You had some therapy this morning that wore you out and then you crashed for many many hours. It wasn't until mommy and daddy decided to go to dinner that you woke up a little (funny how that sort of thing happens isn't it?) and decided to make a little bit of a mess on yourself. It wasn't terrible but it was kind of gross, what with gooey stuff coming out of both ends. I'll spare you the gory details but lets say it wasn't pretty.
However we got you all cleaned up and a little bit of medicine got you all calmed down and ready for a nap while mommy and daddy had some dinner. It wasn't long before you were back up and ready to go again though. We got back from dinner and found you wide awake and watching your mobile like it held the winning lottery numbers in its grasp. It didn't, but that didn't deter you. What did deter you however, was the gunky stuff that has been hanging out in the back of your throat and your nose. Seems like that stuff won't go away and it sure does make it difficult for you to do all this breathing on your own with it there all the time.
So your counter to that is to try and get rid of it, just like you are supposed to. You cough. The only problem is sometimes when you cough you get so worked up that you start squeezing your belly and coughing at the same time making you gag a little. Then comes the fireworks, almost literally. You have given new meaning to the term "snot rocket" the last few days, and ESPECIALLY today. Daddy had just finished wrapping you up for a nap when I heard you cough and I turned around just in time to see you shoot some stuff out your nose in a high arching line across your bed. If it weren't for the fact that you were quickly headed into a full on fit I would have stepped back and admired your form. That was indeed a good shot son.
But for the time being I think we should maybe leave that to the professionals, like athletes or old people. You don't need to be doing that and getting yourself all worked up no matter how cool it may seem right now. So if we can agree to no more snot rockets tonight then I think it is time to turn in and get some sleep. I am sure we will have some sort of adventures tomorrow but until then lets rest up. Sweet dreams little man.
We love you Connor.
- Daddy
Slow and steady....
Hey there Connor,
Since mommy and daddy didn't write you a note last night I thought I would write you one this morning. Yesterday was another pretty good day for you. We're having a bit of trouble with you spitting up which you understandably don't like. In theory you shouldn't be spitting up with the new tube at all. It seems to puzzle the doctors and nurses how and what you are finding to spit up (because it isn't your milkshakes) but leave it to you to be a mystery. You always have liked keeping everyone on their toes.
Yesterday evening mommy and daddy went and watched some football with their friends. Mommy's Bengals pulled out a victory which always makes the day a little better. Mommy and daddy watched all the kiddos playing last night and wished we could have brought you along to join in the fun but don't worry you'll be a part of the craziness soon enough. You have lots of friends waiting to meet you. While mommy and daddy were out Grandma came to babysit. Sounds like the two of you had a good time. I'm sure she spoiled you the whole time but that's what grandma's are for. Thanks again grandma. Mommy and daddy really needed some friend time.
So today begins another week and another month as far as hospital life goes. We will find out who is the new attending for the week and who the new fellow for the month is. Then we will hear what the plan for the week is. As of yesterday the plan was still to hold off on all those tests and let you rest and grow. Mommy is hoping you have a quiet week and can get some serious milkshakes in that belly so we can start packing the pounds on you. The last two days have been your best all week and hopefully we can continue on that path. Slow but steady is the name of the game. So get some rest after that strenuous therapy session you just had and we'll talk more later.
I love you Connor,
Mommy
Since mommy and daddy didn't write you a note last night I thought I would write you one this morning. Yesterday was another pretty good day for you. We're having a bit of trouble with you spitting up which you understandably don't like. In theory you shouldn't be spitting up with the new tube at all. It seems to puzzle the doctors and nurses how and what you are finding to spit up (because it isn't your milkshakes) but leave it to you to be a mystery. You always have liked keeping everyone on their toes.
Yesterday evening mommy and daddy went and watched some football with their friends. Mommy's Bengals pulled out a victory which always makes the day a little better. Mommy and daddy watched all the kiddos playing last night and wished we could have brought you along to join in the fun but don't worry you'll be a part of the craziness soon enough. You have lots of friends waiting to meet you. While mommy and daddy were out Grandma came to babysit. Sounds like the two of you had a good time. I'm sure she spoiled you the whole time but that's what grandma's are for. Thanks again grandma. Mommy and daddy really needed some friend time.
So today begins another week and another month as far as hospital life goes. We will find out who is the new attending for the week and who the new fellow for the month is. Then we will hear what the plan for the week is. As of yesterday the plan was still to hold off on all those tests and let you rest and grow. Mommy is hoping you have a quiet week and can get some serious milkshakes in that belly so we can start packing the pounds on you. The last two days have been your best all week and hopefully we can continue on that path. Slow but steady is the name of the game. So get some rest after that strenuous therapy session you just had and we'll talk more later.
I love you Connor,
Mommy
Saturday, December 1, 2012
G'day...
Connor,
Today you had a good day. We gave you a bath, we all cuddled, and Pappaw was here to play with you while you were awake and happy. You took some baby steps forward and you are full bore back into getting those milkshakes. You got a clean bed and clean blankets and clean everything else and you enjoyed almost every minute of it.
Today was a good day, now lets have a good night and take on tomorrow. Sweet dreams son.
Mommy and daddy love you Connor.
- Daddy
Today you had a good day. We gave you a bath, we all cuddled, and Pappaw was here to play with you while you were awake and happy. You took some baby steps forward and you are full bore back into getting those milkshakes. You got a clean bed and clean blankets and clean everything else and you enjoyed almost every minute of it.
Today was a good day, now lets have a good night and take on tomorrow. Sweet dreams son.
Mommy and daddy love you Connor.
- Daddy
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