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!  

Guess who's sleeping in my house?

It's Charlie!
We got home on Thursday around midnight. He's been doing very well! We didn't have Internet overseas, so I couldn't update, and I've been too tired and busy since then. Adjusting to two kids is interesting! Especially when they have different sleep schedules! I'm working on changing Charlie's schedule to be more in line with Brennan's, to a schedule that does NOT involve waking up at 6AM! I will never get used to waking up at 6AM. Let's just not even try. This morning he slept in to close to 7, so there's hope!

Charlie is adjusting well to family life. He knows I'm his mama, and he gets so excited and puts his arms up when he sees me! He seems to like his brother and laughs at him, but he's indifferent most of the time. He's used to all sorts of little kids running around and he doesn't have a real connection with Brennan yet. Brennan, however, is doing amazing with having a brother! He's very sweet and gentle, and brings Charlie toys. He doesn't seem to be jealous or upset, although he does "claim" us sometimes by running over and hugging us or laying his head in our lap. It's so crazy to see them together. Brennan is 1.5 and Charlie is 3.5, but Brennan is HUGE compared to Charlie. They are the same length (31 inches) but B is almost 26 lbs and C is only 16 lbs. He is very tiny. Brennan has a little pot belly and thunder thighs, and Charlie has noodle legs and you can count his ribs. People are shocked when they find out the age difference.

Charlie has already been to the pediatrician, and he has a cardiology appointment tomorrow morning. I am actually looking forward to the cardio appt, because hopefully a lot of questions will be answered. He'll have an echo done, and we should find out exactly what is going on with his heart and what we will do about it. We were told he was an ASD and a high degree of pulmonary hypertension. Which may be true, but medical records from this country are not known to be reliable. Also, he may have a second defect - it was mentioned by one person, but it's not in his records, which really doesn't mean much. But hopefully, after tomorrow, I'll be able to say something besides "I don't know" when people ask questions about his heart! People are already asking me when he'll have surgery, and he's only been home for three days! I hope to learn a lot tomorrow.
Next up I need to make appointments for ENT, the Adoption Clinic, the opthamologist, and the nutritionist. I strongly suspect Charlie needs his tonsils and adenoids out, and that he has sleep apnea (likely due to his tonsils). Then we need to initiate services through the school district. The poor kid - we've got a lot to get through in the next few months! Luckily, his teeth are in great shape, so I'm holding off on the dentist for just a little bit. Charlie can be a little orally defensive, and it's just not something we need to push at the moment! We've got a lot of work ahead of us. I'm just so glad he's HERE!