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 12th, 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!
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