Mother Knows Best

Wow, it's been a while since I've posted. We've had one heck of a month around here. I knew that I would be writing about what we experienced the past few weeks, but I just haven't been able to bring myself to do it. I'm still filled with much emotion over it, but that's going to be the case for quite some time, I think. So, while the details are fresh, I want to share my story of what happened to help someone else. I don't think that everyone in the world looks at my blog, but in this case, please encourage others to hear this story because you may be in a similar situation one day, God forbid. And fair warning, this is the longest blog that I've ever written and most likely will ever write, but it needs to be heard. So, here goes....

On Monday, March 8th, I took Sage to dance as usual while Travis stayed home with Jaggar. When I got home, Travis told me that Jaggar cried the entire time, which is not at all like him. Right then, my mind kind of went towards the fact that he wasn't feeling well. So when he woke up at midnight that night with a fever, I was not at all surprised. He was hot. I didn't take his temperature at the time, but I drug myself downstairs and got the tyelnol about 2am-ish. I don't really remember the fever ever going down, but the next morning it was around 102 something.

The next day (Tuesday, the 9th), he continued to run a fever, but I don't call the doctor every time that happens. I just watched him and continued with the tylenol. He wasn't interested in solids (who is when they are sick?), but he would nurse so I wasn't concerned. By Wednesday morning, he still had a fever so I called the doctor's office to check in. The nurse called me back and asked the usual questions: Is he tugging at his ears? No. Is he playing when the fever is down? Yes. But the moment I skipped a dose of tylenol or motrin, the fever was back. I thought he may be due for some teeth, and she said as long as the fever didn't go above 102...which it already had at times, that it could be teething. Anything higher was not. She said fever viruses typically last 2-3 days and that if I was comfortable just watching him and doing the medicine as I had been, then I didn't need to bring him in. BUT if anything changed, then they wanted to know about it. I completely agreed with that, so that's what I did. Tylenol, motrin, tylenol, motrin...we almost went through a bottle of motrin that week.

Friday morning (March 12th), day 4 of fever, Jaggar was so hot when I picked him up that I had to check his temp. 103.6. I did not like that. And with it being the weekend, I wanted him seen because I knew as sure as I didn't, that I'd end up in one of those doc-in-the-box places, and I hate those. The doctor's office agreed he needed to be seen. Unfortunately, his pediatrician was out. So I chose Linda White, a nurse practitioner, because she is who comes in the hospital when babies are born, and Sage usually sees her for her well check-ups. She's a nice lady.

*Let me say here, that that morning, I thought Jaggar's left ear looked funny, like it was a bit inflamed, even though that makes no sense. So I'm thinking, "maybe he has an ear infection." After all, we were on day 4 of nonstop fever, but we were going to the doctor's office, so we'd figure it all out.*

So we go to the office, and they do a CBC on him. I wait, and in walks Linda White, "Okaay, well he's got a little virus, and you know what that means. Nothing we can do for it. It just has to run its course. The good thing is that it appears to have peaked by his blood work. These typically last 2-3 days." Right here, I said, "Well, we're already on day FOUR." She didn't say anything and proceeded to hand me a pamphlet on what a fever is and even pointed to a line and read it to me, "A fever is not the illness; it's the symptom." She told me, "Let the body do its job. When you want to sterilize something, what do you do? You heat it up." Ok, made sense to me. She said to only give him the tylenol when he was just miserable. (I knew in my mind that I'd use my own discretion on that one. I was NOT going to let my baby be miserable.) THEN I said, "Are his ears okay?" She looked in both ears and said, "Yep, ears look good." Okay...well, at least I knew we could then make it through the weekend.

It wasn't a fun weekend. He continued to run a fever. With no medicine, the fever was there strong. I was getting a little frantic, "WHAT is wrong with him? Why won't this go away?" So, that Sunday (2 days after our dr visit), I sang at church and Travis stayed home with him since he still had a fever. On my way home, he called me and said, "I know what's wrong with Jaggar. His EAR is sticking out. He won't even let me touch it without crying." IMMEDIATELY, I said, "You know, I THOUGHT on Friday that his ear looked funny, but she checked his ears and they were clear." He said, "Well, I'm just telling you. You need to see it. It's like sideways."

We had just had a conversation about how his ears stuck out some a few weeks prior (like mine), so we were very aware that something was just not right, especially by the way that he cried at the slightest touch. I could barely even nurse him laying on that side. I had to hold him differently because he couldn't stand it. Sage bumped his ear that evening (like brushed it), and he cried for 5 minutes. I just didn't get it. His ears were clear, but something was definitely not right.

So the next day, Monday, March 15th, I tried to let it go. Like I said, I avoid all possible doctor visits, ESPECIALLY having just been there 3 days before for them to give me a fever handout. But he wouldn't even let me wash his ear in the tub. He wouldn't look at me. He wouldn't play. So I called the doctor back on Tuesday morning. Nurse calls me back. I said, "Look, I know this is going to sound weird, but Jaggar's left ear is sticking out. Like if you were to press your hand behind it and make like a 'dumbo' ear. That's what it's doing. He wouldn't let us touch it for 2 days. He's not acting right. Something's not right." Well she goes, "Does he have a bite anywhere?" No. Then she says, "Ok, well we probably want to take a look at him. Can you come in at 3:30?" YES. OH, and DR DOGGETT is out again, who do you want to see? REALLY? Well...I guess we'll see Linda White, the nurse practitioner again. Consistency has to work in our favor at this point.

This is Tuesday, March 16th, 4 days after our last visit with her, just so you can keep up. So we go back. I even printed out pictures to show that this was NOT normal. She walks in and goes, "Long time, no see! What is going on?" So I said, "Look at his ear. It's sticking out. He wouldn't let us touch it for the past 2 days without crying. He's not playing. I can barely get him to look at me and smile..." So she's like, "Yeeeah, you didn't even have to bring pictures. I can see that his ear is definitely sticking out. Let's take a look again here." I said, "Are his ears clear?" She proceeds to look in that ear while I tell her that that day, a week later, is his first day without a fever. "Eardrum is clear. Looks good. Let's look in this other one. Yep, looks good...He seems to be acting good now, and I just applied quite a bit of pressure to his outer ear (by touching it), and he didn't seem to mind. Sometimes this soft tissue can get inflamed, so what I'm going to do is give you a steroid for the swelling. It's a 5 day medicine. If his ear is not better by Sunday, you call me first thing Monday morning and he'll need to see an ENT." I said, "Okay, and his ears are clear? I had really bad ear infections my whole life and tubes at 6 months old." She goes, "Well it's a good thing he doesn't take after mama." Then I said, "Please take me seriously. I never come here, but something is not right." She said, "Oh I know. Your chart is very thin. His ear sticking out is not normal." Then I said, "Okay...just for my peace of mind, is this something I need to be concerned about? Like could this be something really bad?" She said, "I really don't think so." I said, "Do you think this steroid will work?" She said, "Yes, I think it will." So I left with my blue sheet with her signature by "Left Edema Pinna"(which means the top of his left ear was swollen) under diagnosis. Okay. I wanted it filled that night, but the pharmacy was too backed up.

I went early Wednesday morning, March 17th, to have it filled. The pharmacist came over to answer my question of, "Do you think this will work on my baby's ear?" He looked at him and said, "Yeah, sometimes with ear infections, it can get into this soft tissue." I said, "Oh no, he doesn't have an ear infection. His ears are clear." He goes, "Oh...well that is strange. Well, if this steroid is going to work, you will know by Friday." I was skeptical. And getting more frantic really. So we started the steroid. Wednesday. Thursday. Friday. No change.

I walked in Jaggar's room every morning praying his ear would magically be back to normal, but the fact is is that it looked worse. I even told my mom that it looked like his actual head was swollen behind his ear and pushing it out. The longer either Travis or I stayed with him alone, the more crazy one of us felt. We waited for the other one to come home and give us our perspective back to tell us it wasn't as bad as we thought, but the fact is, is that our perspective was just fine. His ear was SIDEWAYS. The weekend came and on Saturday, March 20th, I was crying. His ears were clear from infection, they said. But one was literally sideways. I asked Travis, "WHAT IS WRONG WITH HIM?!" So that day, I was thinking, "He's got a brain tumor." I was sick.

I never mentioned it in blogs because I just couldn't (what would I say?), but I was taking pictures. I took this just to show that I wasn't crazy. I also didn't want people looking at him funny, but it was really obvious. So first thing Monday (March 22nd), I call the doctor's office back and say, "Linda White saw my son for his ear and gave him a steroid. It did not work, so I'm calling like she told me to to get him into an ENT as soon as possible. This is very disturbing." The nurse calls me back, "Um yeaah...I'm not sure why Linda White told you to call today because she's not in on Mondays." I said, "Well it really doesn't matter. She doesn't want to see him again. She said he needed to see an ENT." She goes, "Oh...yeah ok, I see where she wrote that...but I'm going to have to document that with her, so I am going to call you back tomorrow." OH. MY. GOD. I said, "Ma'am, I need you to hear me when I say that I am looking at my son's face and I can see the INSIDE of his ear. SOMETHING IS WRONG." She goes, "Okay...okay. Yeah, well I'm going to talk with her first thing tomorrow and call you first thing." WHAT?! Then she goes, "Some insurances require referrals, not sure if your's does. We try to cover our bases, but you could make the appointment." I said, "Well I THOUGHT if you all did it seeing that I've been there twice in four days that I MIGHT get in quicker." She goes, 'Yeah...you may be right. Ok, I'm calling you tomorrow."

I told my mom, who told me that was the dumbest thing she's ever heard. LINDA WHITE wasn't going to make the appointment. A receptionist or NURSE does that. So I called my insurance myself, found out I didn't need a referral and called the ent here in town. I first asked if I got in quicker if the dr's office referred me. They said it was first come, first serve so I said that I wanted to see the first available. "Okay, Monday, March 29th at 9:30." My heart sank. I said, "You all don't have ANYTHING quicker than a week from now?" NO. I made the appointment and immediately called Chrissie and said, "Give me a name of a good ent in Birmingham. I am getting OUT of this town where no one seems to care." I was relieved when she didn't hesitate to give me a name.

I called Drs McCool and Bhuta in Homewood and spoke to a nice lady, who, when I asked for an appointment for my son, actually ASKED WHAT WAS GOING ON. When I explained it to her, she said, "When can you come in?" I could have cried. Tomorrow (which was Tuesday, March 23rd) at 3:30. Travis was taking off early to go with me. Let me say here that I told him, "Just expect to be referred somewhere else because I think they're going to have to do some imaging of his head." After all, what COULD be causing this? I wasn't even sure an ENT was the place to go.

So we drove an hour and walked in, filled out the paperwork and were in a room not long afterward. A few minutes later, Dr Bhuta walked in and immediately kind of "zoned" in on his face. I began to tell my story of how this is "not normal." I even brought my pictures, but she didn't seem to need them. She looked in his right ear, the non-swollen ear, and immediately said, "Well, he's definitely got an infection in this ear." WHAT?! WHAT!??? I could honestly feel my blood boil. Then she looked in his left ear and said, "There's quite a bit of wax, and it's hard to see, so I want to get a pressure test. I think I know what's going on, but let's do that first."

The whole time, I'm replaying all of the times that nurse practitioner told me that his ears were fine. The lady that did the pressure test was saying how glad she was that we brought him in. Then we were back in the room waiting for Dr Bhuta. She comes in and goes, "Okay. What has happened here is that he's had a regular ear infection--Otitis Media--and when that is not treated with antibiotics, the infection can travel to the soft tissue and bone back here. That is this swelling. I don't want to scare you, but this is very serious. This infection can get in the bloodstream and even go to the brain and cause meningitis. I normally give people weeks to decide on tubes, but this has to be done tomorrow or the next day, no later. Since this is his first known ear infection, and it's this bad, tubes have to happen to help drain some of this. So I'm going to go in, cut open this abscess (thus, WHY HIS EAR WAS SIDEWAYS), vacuum out this infection, and put tubes in to help drain the rest. We may need to do a catscan. We may need to keep him overnight, depending on how it goes, but it will most likely be outpatient. I operate at St Vincent's and Childrens', but if you don't have a preference, I'd like to go to the first available. I also want to consult with my partner just to make sure he agrees with me because we just don't see this kind of thing." And she wasn't lacking experience. She meant they don't see regular ear infections that go that far to that level of severity.

My head was spinning. I looked at Travis with my mouth open, like, "WHAT?" I said, "I ASKED the nurse over and over if he had an ear infection and she said NO." She just kind of shook her head sadly and said that he had some wax in there and that she wished Linda White had cleaned it out, but the fact was that there was no excuse for why this had NOT been seen and TREATED weeks ago. To say that I was furious, was the biggest understatement of the century. Not only did he have one ear infection, he had two, and the one had gotten so bad that it could KILL him, no kidding. I wanted to kill someone, particularly, Linda White. So, Dr Bhuta set us up at St Vincent's for 7 am the next day. Travis took Sage to his mom's that night, and I got to let my baby, who had been feeling like crap for weeks now, scream the entire night because he couldn't eat after midnight.

We left at 5:30 the next morning because St Vincent's is an hour away. I remember when Travis was registering us, I took Jaggar upstairs in the waiting room where no one was. I apologized to him for not pushing for my instincts for him more and vowed that nothing like this would EVER happen again. I just felt like a dog. We were taken upstairs to a room where they got Jaggar's vitals and we put him in a gown. Then we waited. And waited.

I guess I should have taken it as a bad sign when the nurse turned the tv on for us. He cried for an hour and a half. Travis finally got him to sleep. When they came to get him at 9 am, he never even woke up. It is a hard thing and a terrible feeling to hand your baby off to someone you've never seen before. Now I know that "tubes" are a simple procedure. But tubes were really the least of the concern in this case. This was really bad. Everyone in that hospital from the scrub tech, to the nurse, to the anesthesiologist, (and later, the ent) said, "Wow, I'm so sorry...I really hope you can find another pediatrician."

We got to sit in the room we'd been in the entire time. I kept waiting for them to wheel him back in, but before he was brought in, Dr Bhuta walked in about 30 minutes later. She sat next to me and said, "He did great. There was a LOT of pus and infection in there. Actually, so much so, that I cannot figure out how he wasn't writhing in pain and with fever (to which I answered "grace," and she agreed). I don't think adults could handle that much less a baby. It's like his body was doing its best to fight off that infection, but it just couldn't do it, but it blocked it off in that abscess." I asked what exactly all he had, and she said, "He had acute mastoiditis (infection in the mastoid bone), a left posterior abscess, and the tubes put in."

She said that she also did IV antibiotics to help fight all of that and got a white blood count and a culture to see what exactly they were dealing with. Then she said, "I even took pictures because we JUST DON'T see this kind of thing since the INTRODUCTION of antibiotics. But you did the right thing, and he's going to be fine. He's got an open incision behind his ear because I want that abscess to continue to drain. He has a shield over that, and I just want you to do your best to make him wear that to protect it, but I know how it is with a 10 month old." He actually did very well wearing that shield. She did a culture to find out what kind of bacteria it was, but in the meantime started with an antibiotic that she said "was a good place to start," and it turned out to be the right one. She again stressed the fact that "he was going to be just fine." I later realized after reading some on mastoiditis WHY she kept stressing that. Then she said she'd let me know what his white blood count was when the results came back, gave us some drops, and said she wanted him brought back in in 2 days to take the packing out of the abscess and check everything out.

She walked out, and my sweet boy was brought in seconds later. I was surprised to see him awake and also with that shield on. I just wasn't expecting it even though she told me about it. They asked if I had a bottle to give him, which he gladly took because he was starving. The nurse was really sweet, flushed his IV, and looked at his chart and said, "Wow, I see he has a MASSIVE infection. What happened?" Again, STUPID nurse practitioner....not worth thinking about or speaking about. They had given him morphine for pain, so she said that he was feeling "hungover." They watched him for a bit, took out the IV, gave us discharge instructions, and we were free to go by about 11:30. We stopped for lunch at Tazikis, where Mitch met us, but Jaggar slept the whole time.

We made the drive back to Oxford and dropped his prescription off at Walmart, where they filled it while I waited. Then my adrenaline from the day quickly ran out, and my body remembered that I had been up since 4:30am. I think I slept MAYBE 2 hours that night, so as soon as we got home, Jaggar and I snuggled up in my bed. Travis went to work for a few hours, and Sage was still at his mom's house. Jaggar and I had been sleeping for hours when I heard the phone ringing. I looked on the caller ID, and it was Dr Bhuta's office. I answered and to my surprise, it was her. "Hey, I was just calling to see how Jaggar was doing. How is he doing with that shield?" (I was in shock that a doctor actually called because they cared!) Then she said, "I never got a chance to come back in and share his white blood count with you, so I wanted to do that. The high end of normal is 11,000. His was 17,400, so he was fighting a pretty mean infection, and he should be feeling MUCH better now." The past few weeks flashed back to me: how he woke up crying every morning when he normally wakes up happy, how in every picture he had a blank stare on his face or his lips pursed together, how he was waking up every 2 hours. NO WONDER. I said, "I WILL be having a conversation with his doctor." She said, "Yes, I would. He really needs to know." And I thanked her and hung up.

When Sage got home, I think she was just heartbroken for him. She'd say, "MOMMY, be careful with him because he has that thing on his head." Or, "Oh, BUBBY, I'm sorry!" I know it did his heart good to see her because he immediately smiled when she got home. The turn around I have seen in my son in just a few short days after his surgery is amazing. That next morning, he woke up about 3:30am, sat up, saw me and immediately started kissing me. He was SO happy. That was just more proof of how miserable he was.

I was told to wait before addressing the dr's office. Just cool down. Get him better. "You all have been through a lot"...but that next morning, I wanted them to know. So I asked for the office manager, and to my surprise, she actually picked up (they told me she wasn't in yet). I'll spare you the details of that conversation. I know that God was with me because I didn't cuss her out. I didn't tell her how sorry they all were, but I did, in no uncertain terms, get my point across. I told her the ENTIRE story. I told her that they were not a vet's office, and this was not my DOG but it was my son and this could have KILLED HIM. AN EAR INFECTION. She tried to say how Linda White does clean out the ears, how antibiotics MAY not have worked, that this STILL could have happened. But I said, 'You can be relative all day long, but you and I BOTH know, that that is untrue. The ent told me HERSELF, 'WE NEVER SEE THIS....SINCE THE INTRODUCTION OF ANTIBIOTICS,' and I came in there with his ear SIDEWAYS, which was FROM infection. NOTHING else caused that. You know it. I know it, and SHE BETTER KNOW IT. I begged her, told her SOMETHING was wrong, and what did I get? A handout on fever and a steroid. And Dr Doggett needs to know because to insurance, to the hospital who wanted to know who my pediatrician is, to OTHER MOTHERS who immediately ask, "WHO is your doctor??" Linda White is NOBODY. They do not care." Okay, so I did share some details of that conversation. She apologized profusely. I didn't really care. I mean, thank you, but whatever. She said that she hoped we could continue our relationship to which I replied, "I'm not sure we have one." And I really know we don't have one now because I never even got a phone call from the doctor or the nurse practitioner (though I'm not sure I could have maintained composure had she called) apologizing, or asking how he was. I do have some good leads on some other pediatricians and am pleading my case to accept us even though they said "only newborns as new patients now."

Anyway, Jaggar is doing great now. He went back to Dr Bhuta 2 days after surgery, and she wasn't even supposed to be there that day. But she came in just to check on him. She told me to call her that weekend if I had any questions. I wish SHE could be the pediatrician. We go back to her in another week and a half to check the tubes. Life is good again, and my baby is smiling.

I said ALL OF THAT (this took me MANY sittings to finish) to say: trust your instinct. A good doctor or nurse will trust your instinct too. Doctors and nurses went to school to help people (hopefully), and if they aren't willing to do that, take it upon yourself to find someone who will. YOU are paying them! I looked up acute mastoiditis. Before antibiotics, it was a leading cause of death in babies 6-13 months. You know how often it occurs in the US since antibiotics? 0.004%. It can "abscess behind the ear and push the ear forward and out." Jaggar was a textbook case of it. I cannot think long about what would have happened if I waited or kept trusting that "everything was fine" or "how strange it was." Be aggressive, if you must, in letting your voice be heard. Your child's life could very well depend on it. We thank God for keeping His divine hand of protection on Jaggar, for giving us discernment to know something was wrong, and leading us to the right doctor who would know how to treat him. Below are some pictures of him on the day of surgery.

Jaggar in the parking deck. Look at his ear.

I blew this up so you can see. This makes me SOOO angry. Again, look at his ear. LOOK AT IT. I told you that I wasn't exaggerating.

In a gown and waiting. Crying and waiting. He was starving.
And Travis finally got him to sleep about 2 hours after arriving.
This was right when they brought him in after surgery. Look at his little arm wrapped up with the IV.

Poor, sweet angel
Getting him dressed to go home.
Still a happy boy.
On the way home. He slept all day.
I took this the next day. He couldn't sleep well with the shield, so I took a picture of his wound.
This makes me hurt.
But THIS looks like my child, in spite of the shield. He is HAPPY again.
This was on Sunday. Look how much better his ear is already looking. It's getting better everyday!