Wednesday, November 9, 2011

A Mother's Intuition

All day long on Monday, I felt the on and off need to cry my eyes out from relief.  I blame my busy schedule for not really allowing me the chance to just break down.

Sunday night, after an amazing weekend with my family, we were sitting down to dinner all together.  I had made a Jambalaya, and had prepared enough for everyone.  Even Elijah's was blended down a bit to make for easier eating and dampened down so it wasn't too spicy (though he seems to enjoy a little spice and kick to his food I've noticed...) I sat down, took a spoonful of food for Elijah and fed it to him. About 1 second later, Elijah started crying inconsolably and coughing as though he were trying to get something up.  He didn't let up and the crying got worse.  It was obvious his airway wasn't blocked, but I took him out of seat, held him at a severe angle facing down and gave him some stiff blows to the back just to see if he was trying to get something out. ....Nothing.  I did a blind swipe of his mouth to see if there was anything in there that was stuck, and...nothing.  I thought I felt a tiny hard piece about the size of a grain, but couldn't really tell, and in the process, ended up causing Elijah mouth to bleed.  I felt horrible and was really starting to get panicked.  It was clear that nothing was obstructing his airway, but I thought maybe something foreign had gotten into the food, or he's picked something up from the floor beforehand and had squirreled it away.  Perhaps something small, but sharp was lodged in his mouth?? 

We piled into the car and headed for the ER at the local hospital just around the corner from us.  I was probably equally as worried about Elijah being exposed to something in the ER, as I was about what was going on, however we were too worried to have done anything else.  We were seen by a nurse shortly after arriving.  I told her what was happening, and about how his mouth bled when I did the blind sweep.  She told me that the tissue at the back of our throat is so sensitive, that even a gentle sweep can sometimes cause bleeding and to try not to worry that I had done any real damage. We were led back into an ER room and began THE WAIT.

A female doctor eventually got to us and at first glance at Elijah (who was temporarily calmed in my arms) said, "Why is this labeled in orange?? Orange is an emergency and he seems fine."  As soon as I peeled Elijah off of me, he began wailing and coughing again.  I explained what happened and also mentioned that he has Down Syndrome and that if something is in his throat it might make it harder for him to get it out because of his low muscle tone. She said, "He doesn't look like he has Down Syndrome."  ........Ummm, o-kay.  I decided to just simply say, "Well, his physical markers aren't very severe, but he certainly has it." They decided to start with an xray.  Both Charles and I were skeptical that an xray would show anything.  It wasn't as if he'd swallowed a quarter (We've already been through that one before with Christian!) and anything Elijah would have access to would probably be of a softer or even more environmental nature (a sharp leaf from the floor, a piece of gristle from the Jambalaya, or even something plastic, but we went along with it.   Christian stood with Charles while I held Elijah during the xray.  Even though Christian was in good spirits during this whole adventure to the hospital, he was clearly distressed. He clung tightly to "Leo" (the favored stuffed Leopard who is his inseparable playmate and alter ego.) The waiting continued and it grew later and later.  Around 9:30pm we were told that the on call pediatrician would come down soon.  I knew "soon" was relative, and asked Charles to walk home with Christian so he could get him to bed. (Luckily we were only about 3 blocks from home, so a walk was not an impossibility.) I waited another hour and began to worry that I wasn't going to be able to do this all by myself.  I couldn't even go to talk to a nurse and ask how much longer it would be, because Elijah was attached to the monitors and I couldn't just leave him on the hospital bed and walk away. My cell phone wouldn't get reception for calls, but I was able to get a text out to my Mom, who arrived at the hospital even before the pediatrician came down.

The pediatrician confirmed what the other doctor had told us, which was that the xray didn't show anything out of the ordinary. I informed the pediatrician that Elijah has Down syndrome and my concern was that something the xray wouldn't see could be lodged in his throat, and because of his low tone, he might not be able to get it out.  The doctor asked if he had any heart problems.  I said, "No.  Luckily his heart has always been perfect."  Elijah was beside himself.  I was sensing confusion and over-tiredness making the situation worse. The pediatrician said we would get a Barium Swallow Study and that should show us if there was anything at all in his system. He said, "We're going to admit him, but let's see what the Barium study shows."  We were led into another part of the hospital and 20 minutes later the on-call Radiologist showed up.  She was surprisingly young and had a very genuine energy about her.  I was worried that in this state Elijah wouldn't even drink the Barium to allow the study to work.  Luckily he took a few good sips, and then I supplemented with a little syringe of the Barium also.  There was nothing.  The doctor said that she was confident that there was nothing blocking or obstructing his esophagus and we should get home and get him some rest. I told her that they wanted to admit us, and her first response was, "Why??" Interestingly enough, this was the only doctor I didn't inform about the Down syndrome.

We went back to the ER to wait some more and I started getting impatient and told a nurse, "Listen, we want to go home.  Who do I need to talk to?"  The nurse looked shocked. "But, I thought they were going to admit him."  I told her that the Barium Study showed nothing, and I can't imagine what we would be admitted for.  It seemed clear that Elijah was in some sort of pain, but there was clearly nothing in his system to worry about obstructed airways or anything that was extremely dangerous.  At that point I was sensing that whatever happened ( a sore throat made worse by some spicy food?  some small scratch at the back of his throat?) was just made worse by the fact that he was 5 hours past his bed time the day after daylight savings time. The nurses scrambled and said we would have to talk to the doctor.  30 more minutes later the original female doctor who helped us came back in and said, "I understand you want to leave, but I think he should be admitted."  The conversation went something like this:
"Why do you think he should be admitted?"

"Well, we should monitor him to keep an eye and make sure he's okay."

"But the Barium study showed there is nothing stuck, so why wouldn't he be okay?? At this point I think it's worse for him to be here.  He's 18 months old and it's midnight.  He needs to get some good sleep and he's clearly not going to be getting it here."

"Well I think he needs to be monitored and if you want to take him home then I would need you to sign an "Against Medical Advice" paper, because I think it's dangerous for you to do so.  I'm just trying to do what's best for your baby."

"Yes- well I'm his Mother, and I'm sorry- but nobody in the world knows him better than I do. I'll sign the papers."

"Okay, it's just that I've seen a lot of crazy things happen and I'm just trying to do what's best for your baby."

"I'm sure you have. Let me ask you something: Do you have kids?"

"Yes I do, actually."

"Then, you know what I mean about the power of a Mother's intuition.  And while I'm sure your experience is different from mine, being that you are a Mother and a Doctor, I know what I know when it comes to my baby. We might be back here first thing in the morning, but I'm taking my baby home so he can try to get some sleep tonight.Why don't you get us the papers so we can get out of here."

We waited another 15 minutes for the paperwork and this is what it said:
"I believe your baby should be admitted for observation to monitor his heart and respiratory status. You would like to take the baby home against my advice that could result in worsening of his condition or possibly even cardio pulmonary arrest."

WHAT???!!!!  Now it's his heart???!!!  And then  I realized IT, as my mind quickly clicked through the sequence of events.  Two simple words (besides Hospital Liability) are...Down syndrome.  Funny how that doctor didn't even think it was worthy of an "Orange" emergency label when she first came to see us.  Then  the xray showed nothing.  Then the Barium study showed nothing.  But, both she and the pediatrician asked me the second after I mentioned the Down syndrome: "Does he have any heart conditions?"  Even though my answers were no, Elijah's diagnosis makes him a bigger risk for them.  But...I. know. my. baby.
Better than anyone else.
(And it didn't hurt anything that my Mom was there-who probably knows him third best of all- and she thought I was doing the right thing too.)

I took him home, put him to bed and he was asleep 2 seconds after his head hit the mattress.  He slept all night, woke up at his usual time 7 hours later, ate breakfast, took a bath and was back to his happy self without a moments glance backwards. The hospital has two little words that make all of the difference for them and I have mine...Mother's Intuition.

I'm glad we went in, because it gave me peace of mind to know that we weren't dealing with some foreign object lodged in his throat.  We'll never completely know what happened though, because Elijah's not old enough to tell us.  So, I listened to my instincts and decided to stand by them, even though it was really hard.  It was really hard to stand in the face of someone who is telling you that they are trying to do what's best for your baby. It was really hard to stand firm and strong and know that I know what I know...even though I don't have proof.  And ultimately, my intuition was right.  My intuition has always been right.  Which doesn't mean I've always listened to it...

I'm feeling emotionally drained, but needed to get this experience blogged about so I can move on.  Since my time has been so scheduled down to the second, I have not had one minute to myself.  And there are a few people we love deeply on the East Coast who, I know, would love to see these:

My littlest dragon.  I don't think there is any taming this dragon...I think he's the one doing all of the taming in this costume.

My Blue Sea Dragon.  Christian set his mind on being a dragon, wanted Elijah to be a dragon too, and chose this costume as his favorite.  

His choice set the stage for our family costume...

The princess, her knight in shining armour, and two cunning little dragons.
AKA Me and my boys.


Becca said...

(First of all, you guys look AMAZING!!!!)

Oh, wow, what a stressful night!!! But we would totally have done the same thing. So glad everything's okay - I swear, kids are here to give US heart problems!!!

You're an awesome mommy. :-)

P said...

Love those costumes, where do you get things like that!? Did you make them!!? Especially the adult ones! Sweet!

I would have fought my screaming instincts and risked infection-loaded hospital to stay overnight myself. Breathing issues and the incidence of undetected heart problems--no way. Then again, I assumed a 2% chance of DS was in fact DS in utero and I WON that bet to get my little perfect treasure. Odds are he would end up with an infection or pneumonia from the stay thus proving the hospital right!

But overall, monitoring him from home overnight with a rush back or recheck in the morning IS quite likely the less risky option. Hospitals are so GERM infested! Plus your THREE blocks away.

Consider chatting with the hospital admin about your experience. You could educate them for your next trip and help ANY parent of commonly sick kids I think. Do it in your own time even if that means five years from now!

I'd also try to reserve judgement to apply to only this physician not the whole hospital--at least be optimistic. It likely is the fear of lawsuits ingrained in the whole staff though.

I find it so offensive that people think it's NICE to say that our kids dont LOOK like they have DS. I really think that is the intent behind the comments about physical markers.
Says the mom who actually fell HEAD OVER HEELS in LOVE with every single photo of anyone with DS when looking online at pictures after Benji was born. I think our markers are the cutest thing and a wink of sorts about how cool and neat our kids see the rest of us stress-cases!

P said...

And what about the tube to his lungs--could they check that area? Did the barium test show that too? A three year old girl with DS and lots of eating skills got a grape down that pipe and it took hours of coughing in the ER to get out. I don't think they could do anything.

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