Six months home! -Pic heavy

October marks six months home for Charlie.

When we met him, he was 3.5 years old and weighed only 16 pounds. 

Charlie was very weak, and had just begun sitting up on his own. He frequently fell over. Our 1.5 hour visits completely wore him out. He had no language. He wore size 9 month pants.

When he first came home, he was quite sick. We were in the ER one week after he came home, then again 2 days later for an 8-day stay. 

Once we got him healthier, we saw the real Charlie start to come out! We found out he's smart, a good imitator, and very observant. He's a quick learner! He quickly learned his first word, "All done!". It was a long summer as we met with many specialists and dealt with lots of fevers. In his first five months home, Charlie had 5 ER visits, 3 hospital stays (not including surgery), 2 day procedures requiring full sedation, a sleep study, one failed heart surgery attempt, and numerous consults, doctor appointments, xrays, and labs. And, finally, the heart surgery we'd been waiting for! 

Now, at 6 months home, Charlie has truly blossomed. He is my Superman. He's gained a whooping 11 pounds, weighing in at 27lbs. He's now in size 24 month clothes and is finally catching up to his little brother in size! He's gained a lot of strength and energy, as well. Charlie can sit for long periods of time, roll across the room, and bear weight on his legs for up to a minute! He works really hard at physical therapy and leaves us amazed. He's learned a half dozen spoken words and around 30 signs. 

Charlie is a completely different kid than the one we met in the orphanage. He's come so far in so many ways. I am so glad God blessed me with Charlie. I love you, rock star!

First day of school! - Backdated

On October 14th, Charlie had his first day of school! He is in the school district's Early Childhood Special Education preschool class. I had/have mixed feelings about sending him off - he's so little, and I just got him! But he really seems to like it. Right now he's going 2 mornings a week, and in a few weeks he'll start going 3 mornings. He also has therapy twice a week, so he's a pretty busy little guy! They are doing in-class observations of Charlie before we do an IEP, which I am eager to get started on because then I know he'll be working towards goals in class, and not just there to watch the other kids, which I know he prefers! On Friday I asked his teacher (who is wonderful) if he was participating in class, and she said he would do some of the actions in the songs. I was glad to hear that! Charlie is able to do it, but I know he'd be much happier to sit back and watch! So I'm glad he's participating. Here's some pictures from his first day!

Charlie gets his very own wheelchair to use at school! It's pretty spiffy. It has a little more support than he really needs, but it's better than not enough! It's a smooth ride with a wide base, so the other kids are less likely to knock him over.

One of the best things about Charlie's class - there's another little Ukranian in his class! His buddy Stas was adopted close to a year before Charlie, and now they are both 4 year olds in the same class. It's pretty amazing!

They're on their way to being BFFs!

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.

Surgery, Take Two

Charlie's surgery is scheduled for Friday morning. I've been holding my breath to see if it's really going to happen, and so far it's a go! Pre-op is tomorrow - merely a part of an insane day. Our bags are mostly packed, various projects are ready, we're almost ready to go. This time, I'm not nearly as nervous as I was last time. I feel much more prepared and I think it will go great!
Tomorrow Brennan is going to go to daycare for the first time. It's strictly a back-up daycare that contracts with a few companies; Ken's company being one. So we get 20 days a year for only $15! We visited today and at first B wouldn't even walk inside. But then he saw some fish, and a baby, and he was good to go! Today they only had three kids. It's hard to leave him there but I think Brennan will have a blast! He'll go a few days next week as well.
Back to chores...

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.

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!

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!

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!

My cute kids - with PICTURES!

 Charlie and Brennan and chalk

 Isn't he just too cute??

Alina and Charlie grew up in the same orphanage, and now they live less than an hour apart! Alina came to visit with her awesome mom. She brought her brothers too, which Brennan thought was way cool!

 They both love sand...

...and water!

My boys are just so stinkin' cute, aren't they! They hear that from me a ridiculous amount of times every day. If they were any cuter, I don't think I'd be able to look at them directly.

Brennan had a mini-word explosion and I love hearing things in his little voice! He's still picking up words pretty quickly. His newest is "boat", which is SUPER cute. He talks and babbles all. the. time. We try to get him talking on video, but as soon as we take out our cameras or phones, he goes silent! He says whatever is on his mind, which is usually "Cracker". Today it was, "Cack-er. Cack-er. Aw, cack-er! Oh, cack-er." He cracks me up! We also hear "Mommy!" and "Daddy!" constantly. If one of us leaves the room, Brennan calls for us at the top of his lungs! I love it. Or he'll just be walking around, see me, and start, "Mommy! Mommy. Mommy!" Brennan also says "fast" and "wait" - can you tell what he hears every day? ;)

Charlie is more or less stable. His last fever was a week and a half ago and lasted five days. The last two mornings he's had fevers in the morning, which usually turns into a full-blown fever. I'm actually hoping he does have a fever on Wednesday, because we'll be doing labs and we need "sick" labs from him. Although, this time he actually has cold symptoms, so if he's just got a cold, it might skew the labs we really need. Poor kid needs labs from a few different specialties, because we can never get enough in one draw. And half the time we DO get enough, the sample itself is worthless because it's clotted or hemolyzed(squished). Charlie has horrible veins - there's only two that have really been successful, and one of those usually disappears when they get the needle in. It's horrible to watch, but the last two times he's been so distracted by toys or bubbles that he didn't even cry! Anyway, after we get the labs done we *may* know more about when he can have heart surgery. I would really like to get it scheduled so it can stop looming over our lives. I did hear from cardiology last week - they didn't have anything new to say, just waiting to consult with other specialties - but the doctor did indicate that it was good I had called, to "keep the ball rolling." So, what, if I hadn't called, would you have DROPPED the ball? That makes me REAL confident in you. Come on. That's a three year old ball named Charlie, and he doesn't like being dropped!

Eating is once again a struggle for Charlie. I think he just doesn't have the energy. I'm pretty sure his pressures got higher after they closed his PDA, because he's seemed to have much less stamina. Charlie used to chug 36 oz a day and was gaining weight like crazy! Now we have to force him just to get 22 oz in. We've learned a few tricks that make it easier to get it in, otherwise he'd be eating closer to 15-18. For an entire day! He is supposed to get a minimum of 28 oz per day. I've almost entirely cut out spoon-feeding, which I think will be bad in the long run, but it doesn't get him the calories he needs, and then he's too full to drink enough milk. Unless anyone has any ideas on how to make a 1/4 cup of mashed potatoes with 120 calories, we've given up on that for now. If he's having a good day and is making his minimum, then I'll feed him as a "treat" - which of course, to him, isn't a treat at all. Lol. I have been feeding him all sorts of tidbits - bread, fruit, crackers - with mixed results. We found out he LOVES the cream part of creamy wild rice soup. Scrambled eggs went over pretty well too! 

Last week we went one an awesome vacation with my family! For the past two summers, my mom has been too sick from chemo/radiation to celebrate her birthday. So this year, we went on a family trip to our special spot, Duluth! Our family loves Duluth. My parents honeymooned there, Ken and I got married there, and my sister and her husband got engaged there. I was so excited to show it to my boys! We brought them to the beach to play in the waves, and they loved it! Brennan played in the waves with his uncle, and Charlie sat further up on shore. Occasionally a wave would come up and knock him over, so we stayed really close! Both the boys love being in the water. I call them my little fish. We finally had to drag them away when Brennan was shivering so badly he could hardly talk. We had a great few days with my family and introducing the boys to a bunch of new things!

Medical update on Charlie

There isn't much of an update - we still don't have a plan of action for Charlie. Everything is hurry up and get this appointment, wait for everyone to consult with each other, then decide we still don't have any definite answers, so maybe he should see this OTHER specialist as well. We've gotten NO where. This past week we saw pulmonology, infectious diseases, had a sleep study, PT/OT, ST/PT, and had an ER visit. All in three days. What we got from that? ...we need more labs done. We do have a lead, of some sort - his fevers *may* be from TB that is in his bladder/kidneys, instead of his lungs. Maybe. The good news is if it IS the TB, he can probably go ahead with heart surgery. So that's the gist of what's going on. I'll go into more detail below, but you can stop reading here if that's all you wanted to know. :)

To make this as simple as possible, I'll go in the order that he had his appointments.

Sleep Study: Charlie does NOT have sleep apnea. He did have about 10 apnea episodes, but does not qualify for a diagnosis. So, yay. But, his other breathing issues at night are still concerning. At night, Charlie's sats stay lower (91-92% - he is "allowed" to go to 88%) and his carbon dioxide is slightly higher. He's working harder to breathe and not doing it as well. In any other kid, the doctor would have started O2 at night. But since Charlie is supposed to have his heart fixed soon, we're holding off to see if that fixes the problem. Once again, Charlie's numbers were in that iffy wiggle room grey area, so it's not urgent that we do anything, but we certainly need to keep an eye on it and follow up.

Pulmonology: Not many answers here. We had a consult because some of the results from Charlie's heart cath could have indicated something more going on with his lungs that was worth checking out before surgery. The doctor thinks it is most likely due to the pulmonary hypertension. He was more pessimistic about Charlie's surgery, but he didn't have the full cath report in front of him. He was going to consult with the cardiologist and tentatively cleared him.

Infectious diseases: I liked this guy. He actually had some ideas about Charlie's fevers and was more in my line of thinking - test the heck out of Charlie and see if anything shows up. If nothing shows up, then there's nothing holding him back from heart surgery. He ran a bunch of labs, which didn't take into account Charlie's poor history of actually giving us all the samples we need. So we still don't have the answers - we need more labs done. And he's also going to consult with the cardiologist (hello, care conference anyone??). But as a result of those labs, we ended up with a ...

ER visit: So, when they drew Charlie's labs, they included a platelet count. This is supposed to be 100-400. Charlie's came back as 6. His pediatrician called and told us to head to the ER for a recheck. She thought he might have leukemia. It didn't really make sense for his platelets to be 6, because he wasn't pale, had zero bruises, and he didn't bleed all over when they drew labs. In fact, there was a large clot in the tube in the original draw! But we went in anyway, and they drew a ton of labs, which all came back...normal. But hey, Charlie got to visit all his ER friends, who he's getting to know so well! When we go to the hospital, staff who've had Charlie before stop by to say hi because he's just that cute!

So that was the beginning of our week. The rest of the week was a little better, although Charlie has had a fever since Thursday. The docs want "sick" labs from Charlie, but I haven't been able to get him in. I'll call again in the AM, but I think his fever will be gone by then. I hope it is anyway, because in two days we are going on vacation! I am really looking forward to leaving all of this behind for a few days and celebrating one of my favorite people - my Mom! 

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. :)

Quick Cardiac Update

Charlie had his cardiac cath last Thursday. He was in surgery for three hours, and then had to lie flat in recovery for four hours. Tied to a board. He was not a fan. Also, he's not allowed to have fentanyl anymore. As his nurse put it, he doesn't like breathing after he gets fentanyl! But by the time I took him home, he was his usual self, happy as can be!

The initial results from the cath are good. The surgeons decided that Charlie can have surgery to close his VSD! Yay! They closed his PDA while they were in there, and he's doing well with that. His pressures were very high, like we suspected (I don't have the exact numbers yet). He'll be on a new med now...Viagra! If we can ever actually GET the med - apparently, it's not common AND it's so expensive, that our insurance has to pre-authorize it.

Tomorrow morning, the cardiac team will be discussing Charlie's case. On Wednesday his doctor should call me and let me know what they decided. They may decide to let him have surgery soon, or they may decide to leave him on the sildenifil (Viagra) for a few months first, and see if that lowers the pressure in his lungs. They'll also discuss whether or not to treat him with O2 or nitric oxide, but I don't think it's likely. While Charlie was in surgery, they gave him both, and he appeared to do slightly better. I don't think "slightly better" is enough to put him on O2, since it can actually make his pulmonary edema to get worse. It's been worse lately, anyway, and he's up to three times a day for Lasix. I can tell he's doing better on this dose. Putting him O2 would cause more fluid in his lungs, which would need more lasix to remove it. Not a good cycle!

Because of one of the test results from the cath, Charlie needs to have a pulmonary consult and possibly a CT scan of his chest. It could mean something else is going on with his lungs, or it could just be an effect from the high pressures in his lungs for the last three years. So he has a consult on the 12th, with his sleep study the night before. Just another part of his Borderline Syndrome. :) 

But I am Le Tired.

Remember when you were young and stupid inexperienced and you thought to yourself, "My kids will always be well-behaved in public" or "My child will promptly wean at 12 months with no problems" and you believed it? Well, mine was always "My kids will never be early risers. They will be good sleepers and we'll snuggle on weekend mornings." I mean, any kid related to me would NEVER voluntarily wake up before 8AM, right??

Yeah.

Charlie did not get that memo. He seems to enjoy waking up at the buttcrack of dawn (don't name your daughter Dawn, it's just cruel). For awhile, he had Brennan up at 6AM too, and that was awful. So we moved Charlie down to the basement, and within a few days B was back to sleeping in until 7:30. (HA! Never thought I would count 7:30 as sleeping in!) I'm getting slightly more sleep in the AM now, but I really. really wish I could sleep til 7:30 or even 8! For now I've resorted to napping some afternoons. On the days where I don't (like today, inwhich I was occupied with the Great Ant Battle of the Kitchen Sink) then by 8pm I am reduced to an incoherent blob on the couch. Watching Bones. With popcorn. So, Not much in my life is getting done. Although, it is getting better, and my house is cleaner, and I can keep my act together until 9pm most of the time. And unless "snuggling" could also mean "jump on Mama and Daddy", that's not happening either.

But I really need sleep.

In other news. I need to start keeping track of "Things I Thought I'd Never Say, and Then I Became a Parent."
Here are the first few entries:
"Don't feed the cat Cheerios!"
"Don't steamroller your brother!"
"Brennan, that's a brush-teeth, not a brush-wall, brush-fan, or brush-toe. Just your TEETH."
(Yes, we do call a toothbrush a brush-teeth. Get over it.)
"Brennan, you can't take Charlie's eye temperature. Give me that thermometer."
Can't wait to add more!

Borderline syndrome

Charlie has been home for 6.5 weeks! In that time he's gained almost SIX pounds. He's getting fat! His thighs are starting to jiggle! He looks much different than the 16 lb sickly child we brought home. He's so full of life! And so darn cute.

Charlie has Borderline Syndrome*. This occurs when a person has several issues that can be described as borderline - symptoms that don't offer a certain diagnosis, but need further testing to "rule out" an issue or "just to make sure". You also may often hear "wait and see".  Charlie has already had several f these issues, and luckily so far all further testing has ruled out problems! We've got two rule-outs left: a sleep study and a sedated ABR (hearing test). Charlie failed one of his hearing screens today, which *may* indicate a mild hearing loss. Really, it's not a big issue because he can hear quite well. He can hear his dad whisper his name from a few feet behind him. So even if Charlie does have a mild hearing loss, so although it's a possibility he'd need hearing aids, it's not likely. But he'd sure be cute if he did need them. :) We won't do the hearing test until after his heart cath and sleep study. The ENT wants the cardiologist to clear him for anesthesia first, and if Charlie does have obstructive sleep apnea, then his tonsils would have to come out too. BUT, I think Charlie will just be adding all of this to his "ruled-out" list! He's so much stronger than he was 6 weeks ago, and I'm really not seeing the same sleep apnea symptoms that I did when we first got him. Of course, when I checked on him last night, he wasn't breathing. Yeah...there is that. Charlie is just a man of IFs.

June is looking much more relaxed than May. We only have a pre-op appointment and his heart cath scheduled. I also have to find a dentist for him, and get him started in therapy! I've been so wishy-washy on picking a private therapist. I don't know which one is the BEST. He'll be getting therapy through the school district, but that won't start til fall. And I am not looking forward to sending Charlie to preschool in his current state! He's Tuff, but oh so fragile and tiny. Ack. I'm going to have a preschooler! That's too much for my little brain. I'd better just go to bed now.



*Borderline Syndrome is made up.
Because I know there's 1 or 2 of you that wouldn't catch that. :)

Grow Charlie grow!

Charlie is doing fantastic! I knew within days of meeting him that he would really take off once we got him home. And he did. He's up to 20 lbs!! His spine isn't creepy anymore, and his ribs have filled in. He looks great. He's eating well, as you can see! He's doing much better with being spoon-fed. It's definitely not his favorite, but he's not fighting it as much anymore. And we discovered Charlie LOVES mashed potatoes! He also seems to like lemon-flavored things, which I find odd! Charlie claps when we say "yay" or "good job". He can hold his own bottle sometimes, and he signs "eat" and "milk"! He's my superhero. :) He had his VCUG today, and he does not have urinary reflux, even though he did have an abnormal ultrasound. I'm not sure if that was related to the infection, or what. But it does mean we can take him off the antibiotic, so we're down to only 4 meds! One thing I've learned: only listen to the doctors who specialize in whatever they are talking about! For example, the cardiologist heard the results of Charlie's ultrasound and said "Whoa! You only see that with something like Grade 4 reflux! Whoa!" Actual Kidney Specialist: "It might be reflux, it might not. We'll test and find out. Not a big deal." So, parents, don't freak out unless the doc knows what they are talking about. :) I went through something similar with Brennan. I wish everyone would be on the same page!

Brennan is SO over Charlie. He likes him well enough, but he thinks it's time for Charlie to go back where he came from! He's being intentionally rough with Charlie, but then he'll turn around and bring him a toy. We've started a "No Touch" rule between the two of them, because you never know when a gentle pet will turn into a pinch. Today Brennan was giving Charlie kisses, so I think there's hope. Even though he DID throw a toy at Charlie's head. Multiple times. It doesn't help that I almost never have one-on-one time with Brennan. Hopefully we'll be able to start fitting some of that in!

Brennan is picking up signs as soon as you teach them to him! His new favorite is "apple". The only reason he doesn't know more signs is because we aren't teaching them to him! He's starting to talk more, too. Ee-oh for elmo, Go-gee for going (outside), Mama (!!!), Wampa (grandpa), Sa-ee (Sadie), etc. He repeats more too. I'm going to really miss Brennan-ese, though! It is so stinkin' adorable. He talks ALL the time, babbling away, with inflection, chuckles, and gestures. My favorite is when he tells funny stories! He really appreciates when you respond appropriately. Oh, he's so cute. I have adorable kids. :)

Back to Life

So...this time I was away for awhile on purpose. There was too much stress going around. After Charlie came home from the hospital (he ended up staying 8 days) I let all the stress hit me so I could work it out of my system at a "safe" time (i.e. when everyone was happy and healthy!). But life has returned to normal. Our new normal, anyway!

Charlie is doing very well. He is up to 19 lbs already! This kid does not have a problem growing. :) He thinks he is hungry ALL of the time. I think once he gets used to having enough food around he'll stop freaking out when he sees his Pediasure! Note: do NOT let Charlie see the Pedisure in the cart at the store!! Charlie really seems to be enjoying family life! He still likes his brother, although he will cry if Brennan is too close for too long (Brennan is a bit clumsy!). And Charlie learned to clap when we say "Yay" or "Good job"! It is so adorable! We were teaching him to hold his own bottle, but that went out the window because he keeps dropping it to clap for himself! His smile is amazing. And his little giggle!

Charlie has a few more specialists coming up this month: cardiology, sleep consult, and ENT, as well as a VCUG. I'm anxious for the cardiologist appt because we should be getting a plan for his heart catheterization then. We really don't know what treatments we will do for Charlie, or if/when he can have surgery, until the cath is done. In fact, they won't treat him - besides the lasix - until the cath, because they want to see what he is really like. So I really want to get that done! He already had a swallow study this month, and did fine. So that's one less thing to worry about!

Brennan is doing so well with Charlie! It's amazing. Before, he didn't like me holding other kids, or other kids playing with his toys. But he is so sweet to Charlie! Brennan will bring Charlie his toys and wants Charlie to play in the ball pit with him. He gets upset if he thinks we are leaving the house without Charlie (it's really cute!), and once when Charlie was upset, he brought Charlie's bottle over and stuck it in his mouth! Brennan will get too rough with Charlie, but he just doesn't understand how strong he is and that Charlie might have feelings too! For example, Charlie might not WANT the ball Brennan is shoving in his face! (Ok, my parents have this small dog that Brennan adores. He likes to play with the dog, which usually involves Brennan putting the toys right in/on the dog's face. Sometimes, he throws the dog's balls at her. This is how Brennan thinks he should play with Charlie, too!) It's very sweet to see the two of them together. Brennan seems to just know that Charlie is "his" and that he needs our special attention. And Charlie is delighted to have someone his size to watch! They are already best friends for life!

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!