Lauren had a 6 month ENT appt last Monday to check on her ear tubes. Her right one was out, but the left one was still in. As we are almost at the 3 year mark, it required surgery to be removed or it could cause a permanent hole. Lauren had sugery today and it went really well. She was so good. She didn’t cry at all when we went back, they did her o2 sat and blood pressure. But when the nurse put the hospital bracelet on her ankle and left the room, she started crying that it hurt and she wanted it off. It wasn’t anywhere close to tight, so I pulled her sock between it and her ankle and then while still crying and clinging to me, she told me she was scared. Poor baby girl. After Billy and I calmed her down, she was great the rest of the time we were waiting. The anesthesiologist talked to us (they just had to gas mask her, and no IV, yea!), then Dr. Latz came and talked to us. Then they gave her a motorized jeep to drive back into the surgery room, so she put her new stuffed dog my mom got her in the car and jumped in and never looked back. Dr. Latz came out to talk to us about 15 mins later and while talking to us, a nurse came out carrying Lauren saying she wanted us but needed to stay in the back, so Billy went back while my mom and I finished talking to the dr. Five mins later and we were out the door! She had some pain right after, but we gave her some Tylenol and she was completely fine about 20 mins later! yea! She’s running around like nothing even happened.
However, I fed Mason while Lauren was having her procedure done. When Latz came out to talk to us, she was telling us everything about the surgery and the aftercare, but she was totally watching/listening to Mason and then started asking me questions about him (he was really noisy breathing bc he had just ate). So I told her that the burp advice she’d given us last week at Lauren’s appt had helped reduce his spit up, but she said that he definitely had some things going on that she’d like to see him for….and that she could tell by the sound it was laryngeal malacia (meaning a weak voicebox) and not tracheomalacia (weak trachia) like we’d previously been told. She said with all the spit up, he definitely has reflux and that the 2 things go hand in hand…each makes the other worse and that all it takes is 1mm of something or other and it reduces their oxygen intake by 60%. eek. So, she said she had time between her last procedure and her first appt at 12:30 and to bring him back so she could check him out. She’s so awesome.
We took Lauren to breakfast (IHOP, her fav)and then went back to her office for Mason’s appt. She asked me about everything so I told her how he started this his first night in the hospital (usually it isn’t that early she said), how he spits up constantly, how he arches and won’t eat occasionally, how he chokes while nursing on pretty much both sides every time he eats and how it’s long after let down (she said that is not normal at all…thank you, ped told me to pump off even though I told her it wasn’t during let down), how he chokes just sitting in his car seat, and how I watch him reflux and choke and get sour looks on his face. She listened to him, watched him breathe, looked in his nose and ears (he had green crusty stuff in his nose from all the refluxing). Then she scoped him with the small camera thing…tried to go down his nose but it was too little, so went down his throat…he has a pretty bad case of the laryngeal malacia…and unfortunately all the reflux causes everything to swell. The weak voicebox muscles mean his voicebox is falling into his vocal chords restricting the airway and the reflux has caused everything to be mucousy/swollen so he has a really really tight airway. Poor, poor guy!! She was definitely really serious about it all which was freaking me out a bit since 3 different pediatricians at 2 different pediatric practices have told me it’s a benign condition and nothing to worry about and it’ll go away around 4 months. She said that it’s not normal to have gotten it from birth, that it normally gets better before it gets worse, that it generally requires reflux meds, that it’s usually gone by the age of 2, and that sometimes it may require surgery. That is why I love going to the specialists…I really feel like the ped’s blow you off and give you the “standard” answer when obviously that isn’t always the case. She recommended elevating the bed, which I have already done. I asked if I should be even more concerned about SIDS type stuff bc it’s so hard for him to breathe and she paused for a long time and you could tell she was trying not to freak me out, but was like yea, it would really concern me. yikes. So, I told Billy that seals it, he’s staying in the packnplay in our room for a lot longer (I was planning to move him to his crib at night starting either tonight or when we got back from Wichita). Then it was time for him to eat, so I fed him while Dr. Latz listened/watched and checked him out for whether the sound was on inhale and exhale or just inhale and it was whatever way she suspected it would be so it means that the choking/pulling off is related to the stridor and reflux and not a different issue we’d have to figure out. I guess the laryngeal malacia/strider doesn’t allow him to feel that all the milk is there and he’s not swallowing like he should while also refluxing and he’s choking. I feel so bad for him!!
So, she gave us prescription for zantac. She said it will take a week or two to see the results and we need to get him relief sooner than that, so she also gave us a prescription for an inhaled steroid (with a spacer like Lauren has) to decrease the inflammation being caused by the reflux. Of course she said that we may need to move on to previcid if we don’t see results with the zantac or if we have a problem getting him to take it bc of the strong peppermint flavor/smell…but with insurance you have to “fail” zantac first…same as it was with Lauren’s albuterol vs. xoponex for her asthma.
Poor, poor baby. I hate that we got the wrong information for 2 months from the ped’s. Same as it was for 2 months with Lauren with her asthma/milk intolerance. I should have remembered that from her and took him to Dr. Latz sooner…in my head, I’d planned to make the appt if he wasn’t better by 6 months. But, it does seem like his choking and back arching have gotten worse in the last month, but his noisy breathing sounds about the same to me. I’m just so thankful that he was making that noise when she came out to talk to us!! She said he was totally quiet on Monday last week during Lauren’s appt when we were talking about his potential reflux or she would have noticed and would have said he needed to be seen.
A day that started out as “poor Lauren” ended up as “poor Lauren AND Mason”!!
He’s doing really well holding his head up while on his belly, of course, he LOVES tummy time! I noticed that he always lays with his head tilted to the left and asked his pediatrician if he’s getting any flat spots and she said not at all, his head shape is great, but that he has developed “torticollis”. Simply it means that he has favored one side and the muscles on that side of his neck have tightened and just need stretched out (his head kind of tilts to the left when sitting upright, so we need to stretch out the left side muscles). They gave us some easy stretches to do with him, and if that doesn’t fix it in 4 weeks, we call back and will do some physical therapy with Children’s Mercy. She said it’s no big deal and very easy to fix, just a result of baby’s sleeping on their backs instead of their tummy’s. Interestingly, they generally see it with baby’s who are breach, but Mason wasn’t, he’s just always loved to lay on his left side!
