Having asthma and having learnt about asthma are two very different things. I have had asthma my whole entire life. Having struggled with it my whole life, I know what my triggers are and avoid them whenever possible. I also know many different ways that I can get relief from asthma, both medical and natural. My point is, that when it comes to asthma and what is therapeutic for it, I know what works. I also have a wealth of knowledge base because of my medical training to also understand the pathophysiology of asthma and how to self-assess the severity of my asthma. That is, when I am in a hospital setting with my sick infant with Down Syndrome who also has asthma, I know what is working and what is not. That means, I go to the Emergency because IT IS AN EMERGENCY.
This is not to say that I do not value the medical opinions of residents and fellows in hospitals, I do. But, when I am telling you that my son has a respiratory illness and is not responding to the rescue medication salbutamol because his airways are too tight, this is not the time to entertain the thought maybe he is not responding because he does not have asthma and that he has bronchiolitis instead. That maybe, we should try what seems to be the standard course of treatment for bronchiolitis which is a one to two days’ worth of steroids, is going to do the trick with him. Well, it just isn’t going to work with him. He’s a special clinical case because of four reasons that work against him: 1) He was born premature at 34 weeks. Lungs are the last to develop in utero so early birth means that at birth the lungs are not fully developed. They will not fully develop until 2 years of age. (I’m not citing this because it is a well-known clinical fact amongst health professionals) 2) His VERY STRONG family history of asthma on both sides of the family, up and laterally across many members. 3) His bronchioles are small structurally due to his natural small stature. He is small, even for a baby with Down Syndrome. 4) Children with Down Syndrome are susceptible to respiratory illnesses and when they acquire severe colds and flus, often require hospitalization for respiratory support (Stagliano, D.R., Nyland, C.M., Eide, M.B., & Eberly, M.D. (2015). Children with Down Syndrome are high-risk for severe Respiratory Syncytial Virus disease. The Journal of Pediatrics. 166(3), 703-9.e.2. Retrieved May 1, 2017 from http://www.jpeds.com/article/S0022-3476(14)01133-0/fulltext)
I can almost see it in the gaze of the Doctor’s eyes for a moment when I say that I am now giving him 4 puffs of salbutamol every 2 hours, the Doctor thinks 1) That’s way too much (I know, that is why I am at the Emergency) 2) This mom just might be a hypochondriac (I am NOT, by the way). 3) Hmmm, maybe then it is not asthma (Ummm, yes it is, look at the family history and clinical presentation).
They then ask their questions, go the computer to look up his electronic health record, and then ask the same questions they already did before. More than twice by the way. It makes me feel like I am in an interrogation room and being asked these questions over and over again as if what I am saying is a falsehood. My mind cloudy from enduring sleepless nights with a sick baby has limited resources to deal with this but I answer anyway. They point out that his oxygen saturations are a little low but fairly good at 92-96%. Well, let me tell you, anyone crying with full breaths can get good oxygen saturation readings. That, and oxygenation just tells you how many molecules of oxygen are binding to the hemoglobin at that time. You can have good oxygen binding to the hemoglobin and still be starving of oxygen because of low hemoglobin (which is not the case in my son) or because you have poor air entry (Bingo!).
I close my eyes, take a breath to calm myself down and politely say, “Yes, I see that. However, his work of breathing is increased”. That is when they really look at him, and I mean without the stethoscope. I mean LOOK at him. The medical term for this is “inspection”.
Bronchioles (Airways) Are Like Straws
The intercostal muscle and subcostal muscles are seen upon inhalation and exhalation (basically you can see his ribs as he sucks air in and out. If you don’t know what this is like, try doing some strenuous exercise or fast paced walking for 2 minutes while only breathing through a straw. Bet you won’t last long. (I’m being sarcastic by the way, please don’t do that), he has indrawing at the sternal notch (the bottom of his neck, in the middle while gasping in, a shape of an upside-down triangle is seen), and he has nasal flaring (his nostrils are flaring open on each inhalation).
They agree with me. Then they listen with the stethoscope. Hmmm…no wheezing. They are puzzled. Shouldn’t someone that has asthma and is struggling this much to breath have the typical presentation of asthma such as wheezing. Typically, yes. If not, the case you are looking at could be severe.
You see, the typical presentations of asthma are cough, chest tightness, wheezing, and shortness of breath. You almost always have wheezing. Wheezing is the sound of the air in the airways rushing in and out when the muscles in and around the airway are tightened.
You can picture a straw with elastics wrapped around it, that are tightened. The shape of the straw is changed. So, air is going to pass through the tiny foldings that the elastic made. Kind of like making a whistle of sorts. This is what happens when an asthmatic comes in contact with their triggers irrespective of whether they have a respiratory viral illness or not.
Now imagine that there is a thin playdough coating around the interior of the already tightened straw. This is what inflammation from a viral illness looks like. Now add small irregular shaped pieces of playdough in all sorts of spots randomly along the interior of the straw. This is what mucus production from a respiratory illness looks like. Now, when there is so much obstruction in this straw, when you rush air in and out of it, are you going to hear a whistle? Chances are no, because whistles make their sounds from minor changes in shape-not huge ones.
When airways have this much obstruction, you will not hear a wheeze from an asthmatic. So, when the Doctor does not hear a wheeze, they think that the asthma must not be that bad. Either a series of puffs of salbutamol (trade name: Ventolin) in the amount of 15-20 puffs will suffice or give 1-2 days of steroids or both.
Patient-Centered Treatment Care Decision-Making
When I kindly explain that this course of treatment has been tried in the community setting and that a treatment of epinephrine would be better, they hesitate and say they will go speak with their team. That’s when they have someone more senior than them come and examine then and then leave to discuss what treatment they think is best. Then the resident comes in and says something along the line of “we are going to help support his breathing by giving him some oxygen and hopefully this will ease his work of breathing. We are also going to treat him by giving him some epinephrine by a nebulizer to help open his airways more”. I say thank you. I then wait for the nurse to come in and arrange these treatments.
After the treatments are given, there is reassessment. They inspect his breathing. His work of breathing has eased up a bit but he is still showing the three signs of increased work of breathing that I discussed above. Now they listen with their stethoscope (auscultate) and…………wheezing! VINDICATION!
That is usually when I sense the doctor trusts my observations and statements. This is when they either make a decision with me, based on his clinical condition, what is the best course of treatment is. Sometimes they do not and say they are going to admit him into hospital. It is of course, dependent upon how the illness is presenting itself at that time. Sometimes I go home with treatment to dispense, but I am not too sure if the average person would be comfortable doing so and would opt to stay in hospital. And sometimes, my son is admitted. If you follow my Instagram posts, you will see that this time he was admitted for a week.
The strength of his treatments varies for his presenting illnesses. This time, he got 5 days of oral steroids, salbutamol 4 puffs every 2 hours around the clock as needed, and epinephrine every 2 hours as needed, and 2L of oxygen. As he got better, his use of these treatments changed and I ensured I was involved in the course of treatment and discharge planning throughout his stay. He was still ill after a week and went home. But he went home because he no longer needed the epinephrine and oxygen treatments.
If you were wondering…
Now you may be asking, do I tell the hospital staff that I am a Nurse? I don’t. Whether or not they know that I am a Nurse makes no difference in the treatment that my son gets or how fast he gets it. I also, respect the medical learning and opinions of all the medical staff. I do not want my perspective and knowledge to taint what might be, a new evidence-based approach to treatment that I am not aware of. But, they usually find out. Sometimes through the electronic medical record. But its usually my medspeak that usually gives me away. Despite my many efforts, I have a hard time turning the medspeak off.
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