Yes that's right, we are loud.
I remember many times growing up in our house my poor father screaming "stop all that racket, your hurting my ears"! He seriously has hearing loss too, I blame both my sisters, it had nothing to do with me...I am the good one....okay not so much.
In our defense when you grow up in a house with three girls, you gotta be loud to be heard!
I sometimes find that when I am talking about something I am happy, excited or passionate about I get loud and I almost NEVER realize it until someone points it out.
I think I am tone deaf maybe?
So here is the point of the whole "we are loud and obnoxious" entry.
When Makily was six months old and Shands had overdosed her on narcotics she was on the ventilator for three days. It was a NIGHTMARE getting the tube down, it took them several tries and her little mouth was very bloody. When they extubated her on day four, she sounded AWFUL and I would be lying if I said she didn't struggle a lot. The PICU doctors kept coming in saying she needed to be re-intubated and I begged on my knees (okay not quite but close) to just give her more time. I had this gut feeling, this I don't know "mother's instinct" that if they reintubated her she would end up with a trache....or unable to come off the vent altogether. There was a REALLY nice Chinese doctor that kept coming in and out of the room that day just watching Makily breathe. He would suction her, listen to her chest.....gently stroke her forehead and watch her some more. He said they did want to re-intubate her but he agreed with me and he was going to try and keep that from happening. He was in and out of the room all night and day. At one point he apologized for being in there so much and I said "Sir if you want to pull up a chair BE MY GUEST you are taking care of my baby". By the next morning Makily was out of the woods. God bless that little Chinese doctor, I do believe without him, she wouldn't have done so well.
So the following day the PICU doctors tell me Makily needs this invasive test to look down her throat and in her airway (bronchoscopy/laryngoscopy). I was perplexed. I am NOT a doctor but it made no sense to go poking around in her throat AGAIN when she had just been through all that trauma with her airway. I explained that to the PICU doctors and they said they would have Pulmonology and ENT come and talk to me about it. Both specialists came in, I stated my case on why I didnt think she needed the test RIGHT THEN. I said I would have it done eventually but I didnt feel it was wise to put ANYTHING down her airway right now as long as she was stable. The pulmonologist AGREED with me and the ENT never really said one way or the other.
My sister Deborah showed up a little later on and we were chatting about it when two Resident doctors came in wearing surgical scrubs. My sister looked at me like "what are they doing here"? I just shrugged. The female resident started:
Her: Mrs. Caldwell we are here to get you to sign the consent form to do the bronchoscopy/laryngoscopy on Makily. We are going to take her back now.
Me: WHAT!?!?!?!??!!?
HER: Didnt ENT and Pulmonology talk to you?
ME: YEAH AND I TOLD THEM NO WAY! (yes the loudness began....)
HER: Well she is on the schedule to have it done.
ME: That's nice but I told them BOTH I didnt want her to have it and they agreed.
HER: Well the ENT ordered it.
ME: What about the pulmonologist?
HER: Uhm, she thinks it can wait.......BUT she REALLY NEEDS THIS TEST!
ME: Well I am not comfortable with it.
HER: This is a LOW RISK test Mrs. Caldwell. She has a TINY risk or laryngospasms (which at the time could have been fatal to Makily or of course been a reason to put in a trache) but that is it.
ME: Why is it that it is SUCH an emergency to do this now? She spent a month in the NICU here and two weeks in the PICU three months ago and NO ONE has EVER suggested this test.....EVER! She does NOT have breathing issues unless she gets a cold or is sick.....OR UNLESS A RESIDENT OVERDOSES HER ON NARCOTICS!! (*the loudness was REALLY ugly at this point and I saw the nurse slide the door to our room closed)
HER: The ENT really feels this important to do because if she has certain airway problems she may need to be evaluated for a trache, she has PRS you know.
ME: A TRACHE!? No one has ever said that until now!
HER: This is why we need to do this test to make sure she does not need anything like that, it's possible we would find why she went into respiratory distress that way.
ME: I KNOW why she went into distress, from all the MORPHINE that was pumped into her! How about this, I will talk to her pediatrician who I KNOW AND TRUST. If she thinks it needs to be done now then we will go ahead with it....wait are you a resident doctor?
HER: Yes I am
ME: Uhm, well even if I agree to it being done YOU won't be doing it...THE pulmonologist or ENT will do it, I do not trust residents with my daughter.
HEr: I am TOTALLY capable of doing this test myself.
MY SISTER DEBORAH: (yes she chimed in and I don't think she could have held in being quiet for one second longer, my family TRIES desperately to respect that I am Makily's mom and will take care of things, but I could tell it was killing her!)
How many Partial Trisomy 11,22 children have you done this on?
HER: Oh I have done HUNDREDS.
DEBORAH: OH REALLY? That's odd because there are ONLY about 160 known cases so I find that hard to believe. (then she looked at me like "sorry I couldn't hold it in, I just smiled at her, this resident had NO CHANCE between Deborah and I :-)
HER: Uhm, well I mean....I meant I have done this on MANY children with difficult airways.
ME: Like I said I will talk to her pediatrician and if she agrees it needs to be done NOW, I will consent to having ONE OF THE DOCTORS do it and NOT a resident.
HER: Well if you do get the go ahead from the pediatrician we may not be able to do it right then.
ME: That's fine because like I stated before THIS IS A TEST THAT CAN WAIT!!!
HER: I will need you to sign something that says you will not consent to this test and it will be in her permanent chart.
ME: Bring it to me and I will sign it now.
She walked out in a huff while the male resident scurried behind her like he had no idea what to do.
They never brought me anything to sign. I can only imagine what she wrote in the chart about the LOUD MOUTH Mommy and Aunt in Makily's room.
I guess being loud can be a good thing sometimes.
I remember many times growing up in our house my poor father screaming "stop all that racket, your hurting my ears"! He seriously has hearing loss too, I blame both my sisters, it had nothing to do with me...I am the good one....okay not so much.
In our defense when you grow up in a house with three girls, you gotta be loud to be heard!
I sometimes find that when I am talking about something I am happy, excited or passionate about I get loud and I almost NEVER realize it until someone points it out.
I think I am tone deaf maybe?
So here is the point of the whole "we are loud and obnoxious" entry.
When Makily was six months old and Shands had overdosed her on narcotics she was on the ventilator for three days. It was a NIGHTMARE getting the tube down, it took them several tries and her little mouth was very bloody. When they extubated her on day four, she sounded AWFUL and I would be lying if I said she didn't struggle a lot. The PICU doctors kept coming in saying she needed to be re-intubated and I begged on my knees (okay not quite but close) to just give her more time. I had this gut feeling, this I don't know "mother's instinct" that if they reintubated her she would end up with a trache....or unable to come off the vent altogether. There was a REALLY nice Chinese doctor that kept coming in and out of the room that day just watching Makily breathe. He would suction her, listen to her chest.....gently stroke her forehead and watch her some more. He said they did want to re-intubate her but he agreed with me and he was going to try and keep that from happening. He was in and out of the room all night and day. At one point he apologized for being in there so much and I said "Sir if you want to pull up a chair BE MY GUEST you are taking care of my baby". By the next morning Makily was out of the woods. God bless that little Chinese doctor, I do believe without him, she wouldn't have done so well.
So the following day the PICU doctors tell me Makily needs this invasive test to look down her throat and in her airway (bronchoscopy/laryngoscopy). I was perplexed. I am NOT a doctor but it made no sense to go poking around in her throat AGAIN when she had just been through all that trauma with her airway. I explained that to the PICU doctors and they said they would have Pulmonology and ENT come and talk to me about it. Both specialists came in, I stated my case on why I didnt think she needed the test RIGHT THEN. I said I would have it done eventually but I didnt feel it was wise to put ANYTHING down her airway right now as long as she was stable. The pulmonologist AGREED with me and the ENT never really said one way or the other.
My sister Deborah showed up a little later on and we were chatting about it when two Resident doctors came in wearing surgical scrubs. My sister looked at me like "what are they doing here"? I just shrugged. The female resident started:
Her: Mrs. Caldwell we are here to get you to sign the consent form to do the bronchoscopy/laryngoscopy on Makily. We are going to take her back now.
Me: WHAT!?!?!?!??!!?
HER: Didnt ENT and Pulmonology talk to you?
ME: YEAH AND I TOLD THEM NO WAY! (yes the loudness began....)
HER: Well she is on the schedule to have it done.
ME: That's nice but I told them BOTH I didnt want her to have it and they agreed.
HER: Well the ENT ordered it.
ME: What about the pulmonologist?
HER: Uhm, she thinks it can wait.......BUT she REALLY NEEDS THIS TEST!
ME: Well I am not comfortable with it.
HER: This is a LOW RISK test Mrs. Caldwell. She has a TINY risk or laryngospasms (which at the time could have been fatal to Makily or of course been a reason to put in a trache) but that is it.
ME: Why is it that it is SUCH an emergency to do this now? She spent a month in the NICU here and two weeks in the PICU three months ago and NO ONE has EVER suggested this test.....EVER! She does NOT have breathing issues unless she gets a cold or is sick.....OR UNLESS A RESIDENT OVERDOSES HER ON NARCOTICS!! (*the loudness was REALLY ugly at this point and I saw the nurse slide the door to our room closed)
HER: The ENT really feels this important to do because if she has certain airway problems she may need to be evaluated for a trache, she has PRS you know.
ME: A TRACHE!? No one has ever said that until now!
HER: This is why we need to do this test to make sure she does not need anything like that, it's possible we would find why she went into respiratory distress that way.
ME: I KNOW why she went into distress, from all the MORPHINE that was pumped into her! How about this, I will talk to her pediatrician who I KNOW AND TRUST. If she thinks it needs to be done now then we will go ahead with it....wait are you a resident doctor?
HER: Yes I am
ME: Uhm, well even if I agree to it being done YOU won't be doing it...THE pulmonologist or ENT will do it, I do not trust residents with my daughter.
HEr: I am TOTALLY capable of doing this test myself.
MY SISTER DEBORAH: (yes she chimed in and I don't think she could have held in being quiet for one second longer, my family TRIES desperately to respect that I am Makily's mom and will take care of things, but I could tell it was killing her!)
How many Partial Trisomy 11,22 children have you done this on?
HER: Oh I have done HUNDREDS.
DEBORAH: OH REALLY? That's odd because there are ONLY about 160 known cases so I find that hard to believe. (then she looked at me like "sorry I couldn't hold it in, I just smiled at her, this resident had NO CHANCE between Deborah and I :-)
HER: Uhm, well I mean....I meant I have done this on MANY children with difficult airways.
ME: Like I said I will talk to her pediatrician and if she agrees it needs to be done NOW, I will consent to having ONE OF THE DOCTORS do it and NOT a resident.
HER: Well if you do get the go ahead from the pediatrician we may not be able to do it right then.
ME: That's fine because like I stated before THIS IS A TEST THAT CAN WAIT!!!
HER: I will need you to sign something that says you will not consent to this test and it will be in her permanent chart.
ME: Bring it to me and I will sign it now.
She walked out in a huff while the male resident scurried behind her like he had no idea what to do.
They never brought me anything to sign. I can only imagine what she wrote in the chart about the LOUD MOUTH Mommy and Aunt in Makily's room.
I guess being loud can be a good thing sometimes.
