Can you believe it??

We're HOME.

Charlie amazes me. On Friday, he had open heart surgery. On Thursday, he's at home playing in the sandbox.

Just playing, as if his chest had not just been cut open. I can't believe this kid. No one expected him to do this well. Even right after surgery, when he was doing so well, we were prepared for him to go downhill at any moment. I think it was day 3 before we started realizing that this was it - there was not going to be a downhill, there was just going to be awesomeness.

Charlie came home yesterday, on day 5 post-op. I am in complete awe of him. The only new meds he's on are tylenol and an antacid. No heart meds, pressure meds, or blood pressure meds. May I just say, !!!!. I had him wear his Superman shirt home from the hospital. It seemed appropriate. :)

Day 2 - with pics

It's the end of post-surgery day 2, and Charlie is wowing us all!
Initially, it took some work to get his blood pressure and sedation under control. But since then, he's been doing great. His pulmonary artery pressures- which we were worried would be high - have been perfect! Last night they began weaning him off the nitric oxide, which is used to lower pulmonary pressures. He came off of it completely by early this afternoon. And the best part is...Charlie came off the vent completely today! He came off around suppertime, and he's doing great. He's still on some oxygen through a nasal cannula, but it's nice to see his gorgeous little face without all the tape. Today he got rid of the vent, the nitric, foley, an IV pole, and another sat monitor from his forehead. There's much more room in here now, and it looks so much more normal. AND - he hasn't had a fever at all! Charlie is absolutely amazing. We were prepared for him to still have his chest open at this point, and be very sick. But he's perfect! We're so happy.
Now, here's some pictures. Warning: some of them are graphic.

Going to get my zipper

  

Shortly after surgery

So many tubes and wires!

Look, I'm breathing on my own!

I'm a rockstar!

 I'm also a little naughty, so I've been tied down.

But look at those AWESOME numbers!

In order: heart rate, blood pressure, pulmonary pressure, CVP, O2 sats, and respiratory rate - all where they should be. 

Way to go little man! 

Thanks for the prayers everyone!

Surgery's over!

Charlie came through with flying colors! He's doing much better than we expected. He will be kept sedated and paralyzed overnight. Tomorrow if he's doing well, they might start weaning him from the respirator. The only issue he has right now is maintaining a good blood pressure - but even that is going very well. YAY!
I keep staring at him - this feels so unreal. It was such an ordeal getting here, and now surgery is over. It's hard to believe. We're exhausted, but glad Charlie is doing so well.

Home

Charlie's home.
We had a roller coaster of a stay. We were back and forth on surgery on Thursday, and each "yes", "no", and "maybe" brought a slew of emotions. On Wednesday, the surgeon came in and told us Charlie would be on the schedule Thursday. He walked out, and a minute later came back in and told us one of his cultures grew, so surgery was officially off. We were totally bummed. It turns out that Charlie has a UTI. They kept him in the hospital long enough to make sure that he was responding to the antibiotics, and we got home late this afternoon. We had been told that Charlie could have surgery next week, but we found out today that's no longer the case. Apparently, in their conference this AM, the infectious diseases doctors decided they wanted to prevent this from happening again. So the current plan is to keep Charlie on antibiotics until the 8th, and then switch him over to a maintenance dose. And then he needs to be fever-free for a week before they'll let him have surgery. I'm angry and I disagree. If they want to prevent this from happening again ('this' being finding the infection in the OR), then they should do surgery soon! It's very unlikely that Charlie will remain fever-free for very long. If he does get a fever in the next 1.5 weeks, I'm supposed to bring him to the ER and have them page the peds ID on call. Areyoukiddingme. I should make them babysit Brennan while I make these ER trips. I'm going to try and call them and see if I can get a better plan, but they have such random clinic hours, I don't know how easy it will be. We have an appointment next Wednesday, so we might have to wait until then, but that definitely rules out surgery next week.

So, that's where we stand as of now. Charlie will probably not have surgery until late September. If that's the case, I'll have them push it out til October, because we have a lot going on at the end of September. Charlie won't be able to start school this semester, but I was on the fence about that anyway. And this does give us more time to pack some pounds on Charlie - in this hospitalization Charlie lost every ounce we'd worked so hard for these last few weeks. But knowing that makes me more eager to put weight on Charlie - he loses it so fast! He needs every ounce he can get!

We learned a few more things that will help us for the actual surgery. We learned Charlie's chest will likely be left open for a few days after surgery. He'll be in the hospital for longer than we thought. I am going to pack differently next time - instead of a backpack with a change of clothes, I'm going to pack a suitcase with a week's worth of stuff. That way, even when I do get to come home, I don't have to spend time running around and repacking things. So all is not lost. Also, Brennan learned how to say "Mommy is awesome". So, that's awesome.
 

Surgery Fail

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.

My Peanut and Punkin

Charlie has been earning more frequent flier miles at the hospital. They should really start a program, and give parents parking discounts after a certain number of hospital visits!

Charlie is home now, and he's fine. This past weekend, he had a fever, and on Monday night it spiked to 103.4. I was hoping to wait til morning to bring him in, but around 10pm I ended up taking him to the ER. With his fever so high, he wasn't going to sleep anyway, so there was no point in waiting. In the ER they gave him some ibuprofen, and then admitted him for fluids (he was dehydrated) and observation. By the time we got up to his room (4am), his temp was 98.4! That little stinker. I got about 30 mins of sleep that night. In the morning he still didn't have a fever, so I thought we'd go home. But during rounds they decided that since he still hadn't started his sildenafil, they would start it in the hospital because 1) it's easier to get insurance to cover it and 2) the medicine will put him into congestive heart failure, and the hospital doctor thought it would be best to watch him when we started the med. I was a little surprised, since his primary cardiologist - the expert in PH and the one who actually did the cath - thought he should start it now. Charlie had an echo done at the hospital, which didn't show anything new, but something about it made the cardio change his mind about starting Charlie on the sildenafil. He said it would make him very sick and he should only have it a week before surgery. So...we came home today, after a 2-day hospital stay that ended up being the most expensive dose of ibuprofen ever.

I will be calling Charlie's cardiologist in the morning to check in with her about the sildenafil. We still don't have a surgery date - I don't know which person is dropping the ball on that one. Charlie has a follow-up at his ped's office tomorrow. He's been having repeated fevers for several weeks, and no one knows why. So it's another thing to look into. ...yaaaay.

The GOOD news...my boys are awesome! Charlie is growing bigger and stronger every day. He's picking up signs too! Also, he likes to roar. It sounds a little like a newborn lion. :) Brennan finally started really talking. He said his first word when he was only 8 months old, and said a few words here and there. But he wasn't REALLY talking until the last few weeks. It started a few months ago, when he started saying "more" and "uh-oh" all the time. Now he's saying new words every day! It's adorable. He says some out of the blue, like when he ran across the room, picked up my keys, said "Keeeeey" and then tried to leave! Brennan likes to practice words over and over again, and he's pretty pleased with himself when he pronounces a word correctly for the first time. He still uses sign, and his vocabulary is growing. He'd learn a lot more if we taught it to him better! We need to do a better job at that, especially for Charlie. Brennan has picked up a few signs from watching Signing Time, and he gets all puffed up when he learns a new one. A recent one was "bear". He loves his teddy bears! He has a favorite that he sometimes pushes in Charlie's swing. He also makes this bear bounce bounce bounce by holding the top of it's head and bouncing! It's super cute. Brennan also puts the bear on his bouncy turtle and bounces his own little bottom up and down. He cracks me up everyday. :)

Charlie's Hospital Stay

So, our overnight hospital stay turned into a week-long stay! We were admitted Monday, and hopefully we will go home this coming Monday or Tuesday. Charlie has e. coli positive pyelonephritis. That means that he has a urinary tract infection that's assumed to have moved to his kidneys, and his urine culture grew e. coli. This particular strain of e. coli makes the infectious diseases doctors swoon, according to one of Charlie's docs! It's a resistant strain, so the antibiotics Charlie was on initially didn't work. He's now on other IV antibiotics that seem to be working. Charlie had a fever up until yesterday. We've finally made it 24 hours fever-free! I think the plan is to switch him over to the oral antibiotics and make sure he stays fever-free, and then he will be released. That's assuming that he starts eating much better before we go, though. Right now he's only taking about 50% of what he needs orally. He was switched over to Boost, which has more calories than Pediasure and Nutren, so he can drink less but still get the calories and protein that he needs. However, he still won't get enough fluids in if he's not drinking enough, so he may need an NG tube. His fluid balance is important, because he needs enough to stay hydrated, but not too much because he has congestive heart failure, which means fluid builds up in his lungs. He's on Lasix to prevent this fluid uild up, but we can't give him more fluid than the Lasix can handle. We'll see if he perks up enough this weekend to take all of his feeds orally, otherwise he may need an NG tube. His cardiologist thinks a g-tube may be in his future, but I think once he gets a little stronger, he'll start eating a lot more. He seems better today, so hopefully we'll know soon what direction we're going to take.

Charlie's cardiologist compared Charlie to a Russian nesting doll - he's full of surprises! He has a list of diagnoses longer than he is! He's an alphabet soup: DS, PDA, VSD, PH, FTT, and suspected OSA and VUR. Poor kid. While we've been here, he's been seen or followed by cardiology, nephrology, infectious diseases, nutrition, the International Adoption Clinic, and genetics. May is already full of appointments for Charlie! We'll bust through this all and have a great summer showing Charlie what it means to be in a family and have fun!

Looong update - Written Monday 4/25

Once again…sorry for disappearing. J The worst part about not updating very often is that there’s so much more to update! SO this will probably be a very rambly post! I’m writing this from Charlie’s hospital room, and I’ll post it when I find some Internet. Since there’s so much to update, I’ll try and divide this post into categories.

Currently: My poor little guy has already had two ER visits, and this one ended in a hospital stay. He’s ok, but he has an infection of some sort and they’re keeping him for observation. Which I am happy about – which is odd, but he’s so sick that I’m really not comfortable bringing him home until we get some answers. Last Friday evening, we noticed Charlie was having a harder time breathing. I brought him to the ER and we spent the whole night there. Charlie’s cardiologist had taken him off all of his meds, but Charlie still needed one of them – Lasix. So, they gave him some in his IV and kept him long enough to make sure he got better. But he still had trouble breathing all weekend and by Sunday I knew we had a sick kid on our hands. I prayed he’d be fine throughout the night because I REALLY needed the rest before another ER visit! On Monday morning (today) he quickly deteriorated and had a fever, so it was off to the ER! So far, we haven’t pinpointed an infection, but we’re still waiting for the blood cultures. One doctor thinks it’s pneumonia, even though his chest xray is clear and he really doesn’t have any pneumonia symptoms, besides a high fever. Right now Charlie is on antibiotics, and they’ve increased his Lasix. His oxygen sats are in the 80’s (they should be above 95) so occasionally he gets a little oxygen. Right now he is sleeping, and his sats are always lower when he’s sleeping, so his alarm is going off every 30 seconds. Luckily, I learned from Brennan’s hospital stay, and I don’t jump up every time the alarm goes off. I know when to be concerned and when not to be! Hopefully we’ll be able to go home tomorrow with some antibiotics, but I’m hoping we get a definitive diagnosis unless he’s suddenly doing much better. We may also be able to get his  swallow study done while we are here too, it just depends on if they are busy and if we’re here long enough. Otherwise, he has one scheduled for May 12^th, but it would be nice to get it done now. I think he may be aspirating when he drinks, especially when he’s tired. The swallow study will show us what’s going on when he eats, and we may have him drink thickened fluids if he is aspirating. At some point, we’ll need to get a sleep study done too! I’m pretty sure he has sleep apnea, and that can make pulmonary hypertension worse, so we’ll need to take care of that.

Earlier: Charlie had his cardiologist appointment one week ago. He had an echo done, which showed he had a PDA and a “huge” VSD. The VSD is what is causing the pulmonary hypertension, which is thought to be a very high. The plan is to do a heart catheterization, which will tell us more about what is going on in his heart and lungs. From there, we’ll start treating the PH and get it down to a degree where he can safely have surgery to close the VSD. He may have the PDA closed during the cath procedure, but they may need to leave it open until his open heart surgery.  We have the best doctors for him – the head of the heart cath team (or whatever) will be doing the cath alongside the expert in PH. Then, the PH doctor will be Charlie’s doctor. We’re at one of the Top 10 hospitals in the US, and one of the best for hearts. So Charlie is in good hands!

Before that: Charlie and Brennan have been getting along great! I was a little worried, because Brennan would get jealous every time I was holding another kid. But he has been very gentle and sweet. When they first met, we showed Brennan “gentle” by having him gently pat Charlie’s tummy. It helps that we do this with the cat all the time, so B is familiar with “gentle”. Ever since then B has been gentle! He seems to intuitively understand that Charlie needs to be treated that way, and he’ll bring Charlie his toys when he drops them and he talks to him in a sweet little voice. It’s super cute. He’s getting over the novelty of Charlie at this point, and mostly ignores him. He does NOT approve of Charlie wearing his slippers, so we’ll have to get Charlie his own slippers! It’s been interesting adjusting to two toddlers in the house. Brennan is forced to be a little more independent – which we started practicing before Charlie came home. He’s now a pro at backing up over the bottom of the gate and zooming down the stairs, and he’s getting good at walking next to me holding my hand while I carry Charlie (although I can carry both of them when I’m wearing Charlie!). The hardest part is feeding them both breakfast at the same time! Brennan always wants what someone else has, no matter what it is, so he thinks Charlie MUST be getting something better than him. There may have been one or two times where I accidentally fed one kid the other kid’s food in an early morning stupor…but I’m not telling! I did take them both to Target, just to see if I could. I can.

Brennan: He is really turning into a little boy. It’s adorable, but sad. No more Baby B! He is all boy. He learned the sign for bug the first time I showed it to him, and he’s happiest playing outside and digging in the dirt. When I take him outside, he spends the whole time trying to run into the neighbor’s yard. But he really loves playing outside at the grandparents’ houses. He’d spend all day outside if he could! He knows around 25 signs and would know a lot more if I taught him J. Sometimes he signs along with Signing Times. Brennan’s been ‘helpful’ lately. For example, if I am folding laundry he’ll come over and ‘help’ by shaking out the clothes and smooshing(folding) them. Usually he ends up running around with a shirt and messing up my piles! Lately Brennan has been spitting out his milk, and when he does I had him a towel and he wipes it up himself! And if he ever finds a Kleenex or napkin, he blows his nose and then throws it away! He’s just the cutest one year old I have ever seen!