We got here, handed Charlie off, they put him under and intubated him...and he had a fever of 102.2. The surgeon came out to the waiting room to talk to us, and you never want to see that. Also, when a seasoned heart surgeon says a hole is HUGE and NEEDS to be closed...also not good.
We knew this might happen, but we're still disappointed and frustrated. They're doing ANOTHER full work up - labs and blood cultures, etc. - and if they STILL don't find anything, we will again push ahead with surgery. They just want to make sure they're not missing something simple like an ear infection before they cut him open. We're in the PICU right now. They're going to clean out and look in Charlie's ears while he's still sedated, and then he'll be un-sedated and extubated. I'm glad because the sedation keeps wearing off - it's often this way in kids with ds - and Charlie gets ANGRY and fights the vent. It's hard to watch and nothing calms him down (except more drugs!). My poor guy. We'll be in the hospital for at least 48 hours for antibiotics until his blood cultures come back clear. We *might* be able to have surgery on Thursday - the surgeon is trying to fit him in so we can get this done. Otherwise it will be next week. In the meantime, we're just hanging out and trying to keep Charlie healthy.
8.30.2011
8.29.2011
Surgery in the morning!
Tomorrow morning is Charlie's heart surgery. We have to be there at 6:30freakingAM and surgery is at 8:30. That's less than 12 hours - gulp! Today he had pre-op, which included an echo, an EKG, labs, a chest xray, and an appointment with the physician's assistant. It was a long day, and Charlie missed his nap, but he still did really good! He's pretty awesome like that!
The CT scan didn't really give us any answers. His lungs looked "junky" - which is common in kids who aren't breathing on their own (intubated). Charlie's lungs looked more junky than typical, but the radiologist thought that's what it was anyway. Also, there was one lymph node in his chest that was slightly enlarged. More "slightly", more non-answers. It could be a clue, but it's probably nothing. All the doctors agree it's best to go ahead with surgery and hope it solves everything. The surgeon will grab the lymph node if he can while he's in there, but he's not going to dig around for it. Lately, Charlie's fevers have been less frequent and not as bad, so maybe whatever it is/was is getting better anyway!
Brennan is spending the night at my parent's house, and I already miss him. It's hard to be away from him when he doesn't understand why, and I'll miss seeing my little sidekick everyday. He'll spend most of the time with my parents, with other family pitching in here and there. And Ken will take him home to sleep at night, for the most part. I feel so bad for him, but luckily he's a pretty easy-going kid who loves his "Gammas" and "Bampas"!
In other news...Charlie now signs "duck"! It's pretty cute. He's up to about 10 signs now. And Brennan knows his colors! He's still working on a few, like brown. But he knows the rainbow plus gold, black, white, and pink. He's really been focused on it and names colors of things he sees all.day.long. He loves to name the colors of cars, which is how he knows "gold". As he says, "mommy car gold"! He's getting better at saying "More ____" instead of generic whining. Yesterday he also said "Where Daddy going?"! Can you tell I love language development? ;)
I REALLY need to go to bed. I'll try and update tomorrow!
The CT scan didn't really give us any answers. His lungs looked "junky" - which is common in kids who aren't breathing on their own (intubated). Charlie's lungs looked more junky than typical, but the radiologist thought that's what it was anyway. Also, there was one lymph node in his chest that was slightly enlarged. More "slightly", more non-answers. It could be a clue, but it's probably nothing. All the doctors agree it's best to go ahead with surgery and hope it solves everything. The surgeon will grab the lymph node if he can while he's in there, but he's not going to dig around for it. Lately, Charlie's fevers have been less frequent and not as bad, so maybe whatever it is/was is getting better anyway!
Brennan is spending the night at my parent's house, and I already miss him. It's hard to be away from him when he doesn't understand why, and I'll miss seeing my little sidekick everyday. He'll spend most of the time with my parents, with other family pitching in here and there. And Ken will take him home to sleep at night, for the most part. I feel so bad for him, but luckily he's a pretty easy-going kid who loves his "Gammas" and "Bampas"!
In other news...Charlie now signs "duck"! It's pretty cute. He's up to about 10 signs now. And Brennan knows his colors! He's still working on a few, like brown. But he knows the rainbow plus gold, black, white, and pink. He's really been focused on it and names colors of things he sees all.day.long. He loves to name the colors of cars, which is how he knows "gold". As he says, "mommy car gold"! He's getting better at saying "More ____" instead of generic whining. Yesterday he also said "Where Daddy going?"! Can you tell I love language development? ;)
I REALLY need to go to bed. I'll try and update tomorrow!
8.20.2011
Vocab update and lack of CT update
Life is never dull with two toddlers around! I had no idea to little boys could be so time-consuming - and so messy! I was going through some old photos and I noticed how clean my house was when I only had one pre-mobile baby. Ah, the good old days... At least my kids are super cute, so I forget about the mess.
I was hoping to have an update about Charlie's medical issues...but I don't. On Tuesday he had a CT scan, and I still haven't gotten the results. At least two specialties were going to look at them, maybe three. First each specialty looks at it, and ponders. Then they discuss, then ponder. Then they talk about Charlie at one of their conferences, where they usually decide on something (their decision may be: Wait and see what Other Specialty says...). Then, they may or may not decide to tell me about it! Cardiology has conferences every Tuesday and Friday, and they talk about Charlie often! Even though I get frustrated with all the waiting, the doctors are working behind the scenes. In fact, the pulmonologist and infectious diseases doctor attended conferences with cardiology specifically to talk about Charlie. It's great that his doctors are working so hard for us, but in a way, kind of depressing that they have to.
Anyway, the last time I spoke with cardiology, no one had a plan what to do when they got the results of the CT scan - they were just kind of hoping an answer would pop out at them. So, even if the scan was clear - they still would need to come up with a plan. The ID doctor was still "thinking about things" and planned on discussing Charlie with a few of his colleagues. They may decide to treat him for TB, even if nothing shows up on the scan, because that's the most likely cause for all of Charlie's fevers. I really hope that whatever they do decide, they do NOT move Charlie's surgery. It's only ten days away! Since Charlie can't get sick within two weeks of surgery, we haven't been going anywhere. No church for either of the boys, no library, no Target, nothing. Only therapy and doctor's appointments. I do not do well being home all the time, so I don't want all this time inside to be for nothing and have to start over!
Meanwhile, the boys are torturing me with cuteness. They are really that adorable. Brennan is learning colors. He knows all the color names and their signs, but he only correctly guesses a color about a third of the time. He's working hard at it though! All throughout the day he brings me objects and says, "Purple!" or "Orange!" Usually he's wrong, but it's oh so cute. Yesterday he had marker all over his hand, and while we were playing he'd stop periodically, study his hand, yell out "Blue!" and then go back to playing! He cracks me up. Brennan's vocabulary is growing fast - both spoken and sign. He's still hard to understand in both languages, but it helps when he uses them together. Brennan learns a sign the first time you show it to him! He would have a massive vocabulary if we taught it to him! Sometimes he makes up signs, and then it's impossible to guess what he's really saying. But he'll say/sign it over and over until we correctly guess what he is saying, and he gets frustrated if we don't understand. It happens frequently because Brennan likes us to say whatever word is currently on his mind - so, for example, if he sees a puppy he'll say "puppy" until we say it back. The other day he was trying to get me to say "stinky" but it sounded like "keekee" so I had no idea what he was saying for awhile!
Charlie's vocabulary is growing too! He started calling me "mama" again, and now he says it when he actually wants me! He now signs: Brennan, car, more, eat, milk, water, daddy, mommy, grandma, grandpa, hat, fish, and ball. He learns them pretty quickly, but I forget to reinforce them, so he looses signs here and there until I notice and reteach him. Charlie's getting stronger physically too - he's standing! With a lot of assistance, but hey, it's a long way from April when he wouldn't even put his feet on the ground! We have a couch that's just the right size for Charlie to lean over so he can stand without us holding on. His legs are getting so strong. I can't wait for surgery to get over with - I know he's going to grow so fast!
I was hoping to have an update about Charlie's medical issues...but I don't. On Tuesday he had a CT scan, and I still haven't gotten the results. At least two specialties were going to look at them, maybe three. First each specialty looks at it, and ponders. Then they discuss, then ponder. Then they talk about Charlie at one of their conferences, where they usually decide on something (their decision may be: Wait and see what Other Specialty says...). Then, they may or may not decide to tell me about it! Cardiology has conferences every Tuesday and Friday, and they talk about Charlie often! Even though I get frustrated with all the waiting, the doctors are working behind the scenes. In fact, the pulmonologist and infectious diseases doctor attended conferences with cardiology specifically to talk about Charlie. It's great that his doctors are working so hard for us, but in a way, kind of depressing that they have to.
Anyway, the last time I spoke with cardiology, no one had a plan what to do when they got the results of the CT scan - they were just kind of hoping an answer would pop out at them. So, even if the scan was clear - they still would need to come up with a plan. The ID doctor was still "thinking about things" and planned on discussing Charlie with a few of his colleagues. They may decide to treat him for TB, even if nothing shows up on the scan, because that's the most likely cause for all of Charlie's fevers. I really hope that whatever they do decide, they do NOT move Charlie's surgery. It's only ten days away! Since Charlie can't get sick within two weeks of surgery, we haven't been going anywhere. No church for either of the boys, no library, no Target, nothing. Only therapy and doctor's appointments. I do not do well being home all the time, so I don't want all this time inside to be for nothing and have to start over!
Meanwhile, the boys are torturing me with cuteness. They are really that adorable. Brennan is learning colors. He knows all the color names and their signs, but he only correctly guesses a color about a third of the time. He's working hard at it though! All throughout the day he brings me objects and says, "Purple!" or "Orange!" Usually he's wrong, but it's oh so cute. Yesterday he had marker all over his hand, and while we were playing he'd stop periodically, study his hand, yell out "Blue!" and then go back to playing! He cracks me up. Brennan's vocabulary is growing fast - both spoken and sign. He's still hard to understand in both languages, but it helps when he uses them together. Brennan learns a sign the first time you show it to him! He would have a massive vocabulary if we taught it to him! Sometimes he makes up signs, and then it's impossible to guess what he's really saying. But he'll say/sign it over and over until we correctly guess what he is saying, and he gets frustrated if we don't understand. It happens frequently because Brennan likes us to say whatever word is currently on his mind - so, for example, if he sees a puppy he'll say "puppy" until we say it back. The other day he was trying to get me to say "stinky" but it sounded like "keekee" so I had no idea what he was saying for awhile!
Charlie's vocabulary is growing too! He started calling me "mama" again, and now he says it when he actually wants me! He now signs: Brennan, car, more, eat, milk, water, daddy, mommy, grandma, grandpa, hat, fish, and ball. He learns them pretty quickly, but I forget to reinforce them, so he looses signs here and there until I notice and reteach him. Charlie's getting stronger physically too - he's standing! With a lot of assistance, but hey, it's a long way from April when he wouldn't even put his feet on the ground! We have a couch that's just the right size for Charlie to lean over so he can stand without us holding on. His legs are getting so strong. I can't wait for surgery to get over with - I know he's going to grow so fast!
8.10.2011
Charlie is Four!
Charlie turned four! I have a four year old! Weird! It was his golden birthday, and we were celebrating his 1st, 2nd, and 3rd birthdays too. We had a big party at our house. Charlie had a great time opening all of his presents! He actually seemed to enjoy all the attention too. Brennan was a little overwhelmed at times and hid in the playroom. He enjoyed all the goodies around though. :) He also had fun helping Charlie open all of his presents! We found out the boys LOVE balloons. And Charlie is actually really good at playing catch with balloons - it's pretty neat.
In other news - we have a surgery date! August 30th at 1pm. It's less than 3 weeks away. I cannot wait to get it over with! Charlie's heart failure symptoms have increased a little - not terribly, but having a kid in heart failure changes the way you go about your day. and sometimes the poor kid is just SO tired. I am trying not to be too nervous about the surgery, so I am focusing on how great it will be when it's over!
We still don't know why Charlie has been having so many fevers. He's had tons and tons of labs, but everything comes back normal. Which is great, but also aggravating, because we can't do anything to fix it. So far the plan is to go ahead with surgery. For the next three weeks, I will be an anti-germ maniac! Charlie CANNOT get sick, because I do not want to postpone surgery! So back off, germs!
In other news - we have a surgery date! August 30th at 1pm. It's less than 3 weeks away. I cannot wait to get it over with! Charlie's heart failure symptoms have increased a little - not terribly, but having a kid in heart failure changes the way you go about your day. and sometimes the poor kid is just SO tired. I am trying not to be too nervous about the surgery, so I am focusing on how great it will be when it's over!
We still don't know why Charlie has been having so many fevers. He's had tons and tons of labs, but everything comes back normal. Which is great, but also aggravating, because we can't do anything to fix it. So far the plan is to go ahead with surgery. For the next three weeks, I will be an anti-germ maniac! Charlie CANNOT get sick, because I do not want to postpone surgery! So back off, germs!
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