Heartrate continues to be high (120-135).
Starting yesterday (Tues) at 2 PM she started having a slightly elevated temp. It progressed getting higher and higher until in the middle of the night it was a high grade fever. (100.4 F)
They are suspecting she has another infection of some type. They don't know what and they don't know where. But they added on 2 antibiotics (vancomycin and cipro) in addition to the amoxicillin that she was already on and the azithromycin that she take *prophylactically.
They have asked *ID (Infectious Disease) to come back and consult again. They may recommend different antibiotics.
I struggle with ID. They are the Dr.'s that followed her when she got an infection from her spine surgery. I don't think they did anything wrong back then. But it was a hard time.
When they call in ID it just...
#1) brings up bad memories from a painful time
#2) ID seems to escalate things (things just seem to get bigger...more interventions...more tests etc when ID is called in)
#3) you know things are bad when they call in ID
You know that part on the original Monster's Inc when the monster comes back with a sock on his back and they yell "23-19" and the gowned up people crash in through the windows? Jason and I jokingly call Infectious Disease, 23-19. That is what it feels like. That a small thing like a sock is now resulting in chaos.
It is fine. They are doing their job. It is mostly a joke we like to make.
Her *A1C (long-term look at blood sugar) was good. So she does not have diabetes. So her high BG is probably just due to her being really sick.
They have stopped her proglycem which makes me nervous. Her BG has been high 200's-low 300's (which is high) so I get it. They are hoping that by stopping the proglycem her BG will go lower. I just worry that it will crash and go too low.
She has diarrhea...this can just happen when you are sick, even if it is not a stomach bug.
They did a *KUB (abdominal x-ray) and everything looks good.
She is on a mode on the vent called "pressure control". The basic vent settings deliver a certain volume of air no matter what. Pressure control senses how much pressure is required to deliver that air into the lungs. Pressure control works better on really sick lungs and/or stiff lungs.
Her *PEEP is at 14. The Peep is the amount of constant pressure needed to just keep the lungs open. A peep of 14 is a moderate to high amount.
Yesterday her FiO2, when she got intubated and went on the vent, was 92%. We are down to 36% at 11 AM Wed. They have not changed her vent settings last night or this morning and they do not plan on changing them today at all.
She likes to keep her head to the left, and she breathes better that way. We kept her head to the left alot while on bipap because her airway is so touchy. Hence, we have now developed a bedsore on her left ear.
This morning the plan was to do a PICC line, but now they want to wait and see what antibiotics ID wants to do. Then the PICU Dr.'s will decide if she needs a PICC or not. They have been talking about a PICC for a few days now, I think they should just do it. A PICC line is like a more permanent IV. It threads through your vein and ends right by your heart so medicine reaches the heart faster and also PICC lines don't blow or go bad like IV's do.
Overall the Dr experience has been so much better this hospital stay because I am with the nurse practitioner team which means that I don't have any residents or fellows (you know how I love residents and fellows...hahahahaha...I don't!).
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Definitions
A1C= A longer-term look at your BG. It shows how your BG has been over the last 90 days. It is a way to see if the person has diabetes.
Acute= A short-term immediate problem/illness. As opposed to a chronic condition (ongoing condition).
Baer Hugger= A machine hooked with a hose to a disposable blanket. The blanket has small holes in 1 side like an air hockey table. The machine blows hot air into the blanket and the air comes out of the holes onto the person to warm them up. It is the best way to warm her up while in the hospital. I love the baer hugger, I wish we could get one at home, but we cannot.
Bag/Bagging= a mask with a bag attached. The mask covers the nose and mouth. The medical personal will squeeze the bag to force breaths of air into the person to inflate the lungs. The mask and bag are typically connected to O2 also.
Bipap= a machine that provides breaths of air through a tube connected to a mask that covers either your nose or your mouth and nose. It has 2 levels of air being pushed into you (hence why it is called "bi" pap). 1 level pushes a breath of air into you. The other level gives a constant pressure of air to keep the lungs open when exhaling. In comparison, cpap only gives the breath of air, but does not five a constant pressure. She is on Bipap at home also, but only at night. Her home settings are 16/8 (pronounced 16 over 8) with a rate of 12. Meaning it delivers 12 breaths per minute.
BG= Blood Glucose, Blood sugar, Glucose. Ellie's BG is normally 90-110. She has hypoglycemia which means low blood sugar. Low BG is more dangerous then high, acutely (see "acute"). BG spikes when you eat, your body produces insulin which brings BG back down. Ellie takes medicine, Proglycem (See "Proglycem") to block her insulin because we don't want her BG to come down at all.
Bag/Bagging= a mask with a bag attached. The mask covers the nose and mouth. The medical personal will squeeze the bag to force breaths of air into the person to inflate the lungs. The mask and bag are typically connected to O2 also.
Bipap= a machine that provides breaths of air through a tube connected to a mask that covers either your nose or your mouth and nose. It has 2 levels of air being pushed into you (hence why it is called "bi" pap). 1 level pushes a breath of air into you. The other level gives a constant pressure of air to keep the lungs open when exhaling. In comparison, cpap only gives the breath of air, but does not five a constant pressure. She is on Bipap at home also, but only at night. Her home settings are 16/8 (pronounced 16 over 8) with a rate of 12. Meaning it delivers 12 breaths per minute.
BG= Blood Glucose, Blood sugar, Glucose. Ellie's BG is normally 90-110. She has hypoglycemia which means low blood sugar. Low BG is more dangerous then high, acutely (see "acute"). BG spikes when you eat, your body produces insulin which brings BG back down. Ellie takes medicine, Proglycem (See "Proglycem") to block her insulin because we don't want her BG to come down at all.
Blood Glucose= See BG
Blood Sugar= See BG
Bradicardia=Low Heart Rate as opposed to Tachicardia which is high heartrate.
Breathing Treatments=a combination of machines, techniques, suctioning and meds that help clear secretions out of the lungs. At home and in the hospital Ellie uses a vibrating vest, a med to calm and open her lungs and a med to break up secretions. In the hospital they usually just increase the frequency. It is probably the most important things we do to keep Ellie healthy, other than hand washing.
Cap Gas= Capillary Blood Gas. This is a finger poke that they look at how much CO2 is in her blood. We breathe in Oxygen (O2) and breathe out Carbon Dioxide (CO2). If you are retaining (not exhaling) your CO2 then that means you are not "ventilating" enough.
CO2= Carbon Dioxide. 1 carbon molecule (C) and 2 oxygen molecules (O2) combined make CO2. It is what we breathe out when we exhale. We do not want to retain (keep) CO2 in our body.
Continuous Feeds= Ellie gets all of her nutrition from a special medical formula. It is given to her by a feeding pump that delivers a certain rate (a certain amount of formula each hour). She is on continuous feeds which means she gets a little formula all the time equally over 24 hours. The feeding pump is connected through tubing to her gtube (see "gtube").
Culture=A sample taken from the body (urine, blood, ear drainage etc) and placed in a petri dish in ideal conditions (the right temp and lighting etc). It is encouraged to grow. They are then able to see with microscope what bugs grow out of it. They can also put little drops of various antibiotics on it to see which antibiotics make it die (see "susceptible")
EKG-= ElectroCardioGram. A machine that measures the electrical activity in your heart. There are electrodes that go from the machine and stick on your chest. It collects the data and prints it out on a strip of paper for the Dr. to look at. It prints off in a waveform.
Endocrinology= A Dr. that specializes in hormones, diabetes, thyroid, endocrine systems.
Feeds= Ellie gets all of her nutrition from a special medical formula. It is given to her by a feeding pump that delivers a certain rate (a certain amount of formula each hour). She is on continuous feeds which means she gets a little formula all the time equally over 24 hours. The feeding pump is connected through tubing to her gtube (see "gtube"). Giving her formula is called giving her "feeds".
FiO2= Fraction of Inspired Oxygen. Oxygen at home either through bipap or through nasal cannual is measured by liters per minute. The liters per minute is 100% oxygen and the liters per minute is how much is being delivered at once (think of a small stream of water versus a more raging river). Oxygen through a bipap or ventilator in the hospital is measured by FiO2 % NOT liters per minute. They are not exactly comparable. But approximately 30% FiO2 is approximately 2 liters. FiO2 goes up to 100% Oxygen. As a comparison, "room air" (the air we breathe) is 21% oxygen.
Glucose= see BG
Culture=A sample taken from the body (urine, blood, ear drainage etc) and placed in a petri dish in ideal conditions (the right temp and lighting etc). It is encouraged to grow. They are then able to see with microscope what bugs grow out of it. They can also put little drops of various antibiotics on it to see which antibiotics make it die (see "susceptible")
EKG-= ElectroCardioGram. A machine that measures the electrical activity in your heart. There are electrodes that go from the machine and stick on your chest. It collects the data and prints it out on a strip of paper for the Dr. to look at. It prints off in a waveform.
Endocrinology= A Dr. that specializes in hormones, diabetes, thyroid, endocrine systems.
Feeds= Ellie gets all of her nutrition from a special medical formula. It is given to her by a feeding pump that delivers a certain rate (a certain amount of formula each hour). She is on continuous feeds which means she gets a little formula all the time equally over 24 hours. The feeding pump is connected through tubing to her gtube (see "gtube"). Giving her formula is called giving her "feeds".
FiO2= Fraction of Inspired Oxygen. Oxygen at home either through bipap or through nasal cannual is measured by liters per minute. The liters per minute is 100% oxygen and the liters per minute is how much is being delivered at once (think of a small stream of water versus a more raging river). Oxygen through a bipap or ventilator in the hospital is measured by FiO2 % NOT liters per minute. They are not exactly comparable. But approximately 30% FiO2 is approximately 2 liters. FiO2 goes up to 100% Oxygen. As a comparison, "room air" (the air we breathe) is 21% oxygen.
Glucose= see BG
Gtube= Gastrostomy tube. Gastro means stomach and ostomy means hole in the body. Ellie has a gube that she gets food and medicine through. A gtube is a 1 way valve like a straw that has a port on the outside of belly and goes directly into her stomach. This bypasses her mouth and throat since she does not/cannot eat orally (only licks and tastes).
Hard to Bag= It is difficult to force breaths of air with the bag into her when she is struggling with her sats.
Hard to Bag= It is difficult to force breaths of air with the bag into her when she is struggling with her sats.
Hypoglycemia= Hypo means low. Glyce means glucose. Emia means blood. So Hypoglycemia means low blood sugar (See BG). Ellie has hypoglycemia. Low blood sugar is more dangerous acutely (see "acute") than high blood sugar.
Hyper-oxygenate= (Pre-oxygenate). Hyper means high. Oxygenate means increasing the oxygen that is in a persons blood. Hyper-oxygenate would mean to increase the amount of oxygen a person is getting in order to temporarily raise sats so that you can do a procedure. Then when the persons sats lower with the procedure, the sats don't have to come back up quite as far.
ID/Infectious Disease=they are the specialists for antibiotics and superbugs and virus and bacterial infections.
IHC= Intermountain Health Care. They are a large medical (probably the largest) company here in Utah. They own hospitals, health insurance companies,homecare companies and home medical supply companies. Primary Children's is an IHC facility.
Intubate/Intubated= A breathing tube in the mouth and down into the throat. It would also be connected to a ventilator (vent) which would deliver breaths of air
Intubate/Intubated= A breathing tube in the mouth and down into the throat. It would also be connected to a ventilator (vent) which would deliver breaths of air
KUB= abdominal xray. Often used to look at how much stool and gas are in your intestines/stomach.
NTU=NeuroScience Trauma Unit. For spine and trauma (like car accident or drownings etc). The inpatient unit that deals with the brain and spine. It is right next door to PICU. They have taken over part of NTU right now and are using it as a PICU Annex since PICU is so full.
Oral Medications= For Ellie...she does not eat or drink anything orally (only licking and tasting things). So when we say oral meds, they are ones that could be taken orally if you were able to eat orally (as opposed to IV meds). But for Ellie, oral meds are given through her G-tube. We either get a liquid version or we crush the pill and mix it with water to give through the gtube.
Peak=When the symptoms of an illness is at it worst.
NTU=NeuroScience Trauma Unit. For spine and trauma (like car accident or drownings etc). The inpatient unit that deals with the brain and spine. It is right next door to PICU. They have taken over part of NTU right now and are using it as a PICU Annex since PICU is so full.
Oral Medications= For Ellie...she does not eat or drink anything orally (only licking and tasting things). So when we say oral meds, they are ones that could be taken orally if you were able to eat orally (as opposed to IV meds). But for Ellie, oral meds are given through her G-tube. We either get a liquid version or we crush the pill and mix it with water to give through the gtube.
Peak=When the symptoms of an illness is at it worst.
PEEP= the amount of constant pressure needed to just keep the lungs open. A peep of 14 is a moderate to high amount.
PICU=Pediatric Intensive Care Unit
Pressure Control= The basic vent settings deliver a certain volume of air no matter what. Pressure control is a vent setting that is a step up. Pressure control senses how much pressure is required to deliver that air into the lungs. Pressure control works better on really sick lungs and/or stiff lungs. the amount of constant pressure needed to just keep the lungs open. A peep of 14 is a moderate to high amount.
Proglycem= (Diazoxide). Ellie has hypoglycemia (See " hypoglycemia"). She takes proglycem (a medicine) to block her insulin. BG (see "BG") spikes when you eat, your body produces insulin which brings BG back down. Ellie needs the Proglycem to block the insulin her body produces so her blood sugar doesn't go any lower than it already is. Proglycem is what is known as an "orphan drug". It means not very many people take it (the demand is low). So pharmaceutical companies do not want to manufacture it, because there is not a lot of money in it. But the people who need it, absolutely must take it, it is a life-saving drug. So the federal government subsidizes (gives money to) the pharmaceutical companies to make it. With twice a day proglycem as well as continuous feeds (see "continuous feeds") she maintains normal blood sugars at all times (BG 90-110).
Prophylactic/Prophylactically= taking an antibiotic all of the time in order to kill/keep away a recurring infection. Usually (but not always) the prophylactic antibiotic is not given all of the time. For example it might be given for 2 weeks on and 2 weeks off. Or it might be given Mon/Wed/Fri only. This is so they don't build up a tolerance to it and create a super bug. Ellie takes Azithromycin on M/W/F for recurring pseudomonas lung infectection (pneumonia).
Prophylactic/Prophylactically= taking an antibiotic all of the time in order to kill/keep away a recurring infection. Usually (but not always) the prophylactic antibiotic is not given all of the time. For example it might be given for 2 weeks on and 2 weeks off. Or it might be given Mon/Wed/Fri only. This is so they don't build up a tolerance to it and create a super bug. Ellie takes Azithromycin on M/W/F for recurring pseudomonas lung infectection (pneumonia).
Recovering/Recover=bringing her sats (oxygen in blood) back up to normal after they have dropped too low.
Resistant Bugs=AKA Superbugs. These are bugs that are resistant to being killed by antibiotics. In which case you have to branch out to bigger or more unusual antibiotics that they reserve to use only on resistant bugs. Resistant bugs are created from a person and society being on so many antibiotics. You should only take antibiotics when needed. You should always finish ALL of your course of antibiotics. If you do not finish your course, then the bugs get stronger and learn to fight that antibiotic. Never self treat with antibiotics be taking someone else's antibiotics or ordering antibiotics from another country.
Room air= this is the air all around us that we breathe. It is comprised of 21% oxygen.
RT= Respiratory Therapist
Sats/Satting=(Saturation) Oxygen in blood. Given in a percentage up to 100%. We want it to be 90% or higher.
Settings=(See also "bipap") The amount of pressure and oxygen that the bipap is delivering. Ellie's normal home settings are 16/8 with a rate of 12. This is pronounced 16 over 8. The 8 is the constant pressure that keeps her lungs open even with she exhales. The 16 is the amount of pressure/force that she gets when the bipap machine delivers a breath of air.
Susceptible= When they grow a culture (see "culture") they will place drops of various antibiotics to see which ones will kill the bugs. This tells the Dr. which drugs the bug is "susceptible" to. Then the Dr. can prescribe the right drug to kill the bug.
Tamiflu=a medicine released by the CDC each year. They formulate it differently each year to treat that years strain of the flu. This will noe help with a cold, but can help with the flu. You are prescribed a 5-7 day course of tamilflu and it can lesson the effects of the flu and/or shorten the effects of the flu.
Trach/Tracheostomy= Pronounced TRAKE. The first part of the word, Trach, refers to Trachea (the part of your throat where air goes to and from the lungs). Ostomy means hole in the body. So a trach is a hole directly into your trachea (throat) that helps you breathe. It is like a straw in your throat. Instead of breathing through your nose and/or mouth, you would breathe through your trach. If you cannot breathe on your own, then the trach would be connected to a vent (See "vent")
Ventilator/Vent=A machine that delivers breaths of air through a breathing tube while you are intubated (see "intubated") or trached. A vent also monitors and helps with the breaths of air you exhale also.
Ventilating= Breathing well. Your lungs are filling up with air (O2) well enough and you are breathing out (exhaling) CO2 well enough.
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