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Milo has been sick since November. In December, he was in the hospital for a week vomiting. In January, we almost lost him while he spent 2 weeks in the Special Care Unit for RSV. In February, they said that he still had RSV, and he stayed a week. (He gets dehydrated easily.) They didn't test for RSV then, but someone FINALLY called a pulmonologist. We're a little bit in love with him-sweetest, most caring doctor. He knows exactly how to handle us and kids, and he gets things done! He ordered a sleep study (finally got a record of Milo's sleep apnea), another GI study (showing more significant reflux), x-rays (showing damage to lungs from acid and RSV), a pH probe (to show the extent of the reflux), and told the surgical team that he demanded that they do a fundo, no matter what their pH study said because he was obviously getting damaged. In March, Milo had a fundo (which they really should have done when they placed his g-tube) and adenoidectomy. He hasn't thrown up since!!! However, he's still having lots of breathing problems. He's been on a few rounds of different antibiotics and steroids, and he has 3 different nebs that he gets around the clock.
On Thursday, his chest congestion FINALLY cleared! (He will still have to have a sweat test for CF, but we think that this is not what he has.) He was still breathing hard, and his sats kept dropping. He still seems apnic, too. On Friday, I was going to call the pulmo, but Milo seemed better. Over the weekend, of course, he got worse. Yesterday, I called the doc again, and he had me bring Milo in. When we got there, Milo was fine again. (I'm sure that the doc thinks that I'm crazy-I'm not a panicky parent, either.) He said that the x-ray showed significant damage still, and that was going to take a while to heal. We have a repeat sleep study in May. We left the office at 4, Milo sleeping. I couldn't rouse Milo, even when we gave him his growth hormone shot...until 10 this morning!!! His sats dropped into the 80s, even when he seemed to be breathing closer to normal than he has been. We changed his positions, and had to double his oxygen. I didn't call the doc to ask-I was too tired. When he finally woke up, he seemed pale, but didn't seem to feel badly. He has no fever, but his sats keep dropping lower than normal when he's sleeping. I called the doc again to ask if I could officially up the level.
Apparently, Milo's official breathing dx (for now) is BPD (bronchopulmonary dysplasia). It's pretty common in tiny kids and ones who have had some of his same problems. I didn't know this, or I probably wouldn't have taken him in yesterday. I mean, I didn't know his dx!!! I asked, and I was told sleep apnea and a resistant infection. Anyway, I'm waiting for the doc to call me back. I know that he thinks I'm crazy. EVERY time I've taken Milo to the ER or to the doctor, there is definitely something wrong with him that needs immediate attention, so I hope that yesterday doesn't count against us too much.
Sorry this is so long. We're just trying to figure out what's going on! Our "support system" here just doesn't understand how scary this is and how frustrating and tiring it all is. We get a lot of, "Well, I'm sure he'll be ok," and, "That's probably just normal for Milo." *sigh*
THANK YOU for letting me get that off my chest. Here's hoping that we get a call back with some answers!
Unfortunitly, I just understood everything you typed. I'm surprised they didn't do the nissen and gtube together. Obviously the fundo will (or should end) reflux/vomiting.
Is he having Cyanosis? I always know whenever Ava is getting sick because every time she takes a bottle or cries, her sats will drop. Do you have O2 for him? (I'm asking b/c you have a pulseox obviously). If so, maybe turn it up when needed? Also, I'd ask the pulmonary dr about emergency steroids or an epi shot. Ava's doc is constantly making sure we have emergency meds that we take everywhere. I would also ask about monitors for night since you think he has apnea. They can be a PITA, but Ava still uses hers 24/7.
I hate sleep studies, so I feel your pain! I'm sorry your support system isn't helping. I will tell you a few things to watch for.
1. Babies in respiratory distress will position themselves with their heads back if possible to open their airway. It's instinct. Watch for head bobbing at rest. Call Dr if you see this. Nasel flaring, call dr if he is doing alot of flaring. The most important times to watch for blue spells are when crying and sucking.
Let me know what the Dr says! ((Hugs)) I know how you feel. Nothing is worse than watching your baby struggle to breathe.
Thank you, ladies! I thought you'd understand. The fundo has already helped tremendously-he's gaining weight at a slightly higher rate, and he seems happier. The Zegerid is helping, too, so even when he does regurgitate a little, it doesn't seem to hurt nearly as badly. If the surgical team had turned him down for a fundo, the pulmo was going to push it through. Love that.
Milo has a giant head compared to his body, so we make sure to position him differently. He has a roll under his neck, and his bed is inclined. We're doing everything that we possibly can physically. We don't overload him with blankets, and we keep it cool. He has always dropped his sats when he's eating because he never got the suck/swallow/breathe thing down. The docs never seem to care about this. I'm not sure why-if his eating is such an issue, why isn't this being looked at? His sats drop to the 70s when he's eating! No wonder he gets so sleepy so quickly. Anyway, they don't seem to worry about that.
Milo is on oxygen at night. Last night, after all of this with the doc yesterday, was the first time that I had to turn it up. Weird, since all of that congestion should have been an issue! The nurse finally called back this evening and I told her everything. She said that all of it sounded very unusual (duh) and that the doc wants to move up the sleep study. The doc didn't call back tonight like he was supposed to, but he's very good about calling when he can. He'll call from his cell phone at home a lot of times. Very nice. He thinks that it's just obstruction. I can't seem to convince him that Milo is having problems besides. I guess that he's just attributing it to the BPD. Still, I feel like we should have an option other than watching Milo struggle and fuss.
OK, I think that I mentioned this in my post about CF, but my mom died almost 6 years ago at the age of 44 from pulmonary fibrosis. That's so young for that disease. Well, it's young to die from anything, really. I'm totally and completely freaked out by lung problems. I have undiagnosed breathing problems, so it wouldn't surprise me if Milo just has something like that going on, but it freaks. Me. Out. I still don't panic-I don't call the ped every time my kids cough, but this is very real and very different. Unfortunately, I can't seem to separate watching Milo breathe and watching my mom in her last few days. That's terrible, isn't it?
Sorry. It's late. I should have waited til morning, but I'm going to be up all night now. The stupid oximeter keeps beeping, I keep adjusting everything, and I still have to give breathing treatments. Part of me wonders if I should hold off on that. The albuterol made him worse, and I'm not entirely convinced that these are really helping.
Really, I'll shut up. I'm just thinking too much, worrying too much, and not sleeping enough.
Thank you, ladies. I feel so very grateful to have a place to go to let some of it out, whether it's worry, frustration, anything. Thank you!!!
ETA: I'm hoping that it's just BPD healing and a little obstruction. Pulmo mentioned that we'll most likely end up with CPAP, which is great. In the meantime, we don't have the apnea monitor. Doesn't that seem strange, when that was his diagnosis?
Last edited by iamkc; April 21st, 2009 at 11:09 PM.
Doc has mentioned the apnea monitor a couple of times, but we haven't done anything about it yet. It may be because he really thought that the adenoidectomy worked. Neither one of my kids has ever been on CPAP, and all of the adults I know who have machines use BiPAP and HATE CPAP. So, I'm not looking forward to it. I'm not sure what's an option, though, since Milo is so small. I guess we'll just wait until the sleep study to see what the doc recommends. Maybe it won't be obstruction and is something that will just take time to heal. That would be EXCELLENT!
I'm sorry that I go on and on. I'm with 2 kids in our house all day with no one to talk to...so I type it out on you.
About to start a different post, but for this particular thing, the doc moved the sleep study from mid-May to Monday. He's sure that it's obstruction. When Milo breathes in, no more snoring, but when he breathes out, it sounds like he's making a "motor boat" sound with his lips. Does that make sense? He can't seem to breathe out of his nose, and even breathing out of his mouth takes a lot of effort. Someone told me that they may be discovering that kids with RSS have some airway distortion issues (not all, but seems to be a little more common in RSS than the general population-whatever "common" means in a rare disorder!!!), so we may have no option. I think that his size limits him to CPAP for now, but he may be able to change later.
Thank you for asking. You guys are the first to ask-family and friends just sort of ignore it all...