They did the *protective brush yesterday. It grew out a small amount of *pseudomonas. Every time something grows from her lungs it is pseudomonas. It is a common bug for people with trach's and for people with recurring pneumonia. But it is a strong bug. It will usually come back once you have it. It is nearly impossible to eradicate permanently.
Realistically (someday...not now...I hope) I think it will be pseudomonas or seizures that kills Ellie. Every time she is really really sick in the hospital, she has pseudomonas.
I know you are thinking...that's terrible to think about your child dying. I agree it is terrible. I shouldn't have to. But I do have to think about it. It is normal life for me. Ellie will die at some point before I do. I will be sad and it will be a REALLY difficult time for all of us. But not thinking about it is not healthy either.
For the average adult...how many children do they know that die over their lifetime? You know...a friends child drowns, or a friends child dies in a car accident. I would guess a few over a lifetime...maybe 5?!?!?!?!?! Possibly 10?!?!?!?!?!?
I live in a different world. I have probably AT LEAST 6 of my friends children die a year, sometimes more. This is reality for my family. Most of them are FB friends that I have never met, but some of them are dear dear friends that I love with all my heart. Even the FB friends that I have never met...they have children with the same diagnosis as Ellie, how can I help but place myself in their shoes and imagine the grief and imagine myself in the same circumstance.
Most of the time I am not thinking about Ellie dying and I can be in the present. But sometimes things hit me, like when they say..."she grew out pseudomonas." That is one of those times when death brushes my cheek as the thought floats by.
We are still waiting to see what the pseudomonas *susceptibilities are.
For now they will take away all previous antibiotics except the Levofloxacin (Levoquin). *ID came back in to consult on that.
I rebraided her hair today and saw a bunch of sores in her scalp. The redness on the ear is a *pressure sore. But these are weird. I don't think they are pressure sores. She has had pressure sores in her scalp before and they are much bigger...not focal points like these and not multiple sites.
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| Red spots on scalp |
I do not love wound team. They always want to put creams and *dressings on things and I feel like it is better to just keep pressure off of the area and let it be open to the air.
They stopped her proglycem and started a very low insulin dose on a pump to try and correct her BG.
Her electrolytes have still been low...so they have still been replacing postassium, magnesium and calcium.
They wanted to do *lasix the last few days to get off the extra fluids (from the IV fluids). I convinced them to keep waiting just a little longer. It leads to this vicious cycle of peeing out fluids, then your electrolytes drop, they you replace with more IV fluids, then her cells hold onto the fluids (She gets puffy), then they want to do more lasix.
She is already struggling with her electrolytes, I didn't want her struggle even more by giving lasix.
Her the wave pattern of her heart was off during the night so they did another *EKG. I have not heard the results. *Cardiology was called to consult on it.
She is more awake today...yesterday she was sleepy. So maybe she just caught up on her sleep??!?!?! Maybe she feels better having her BG corrected?!?!?!?! Maybe she just feels better because she is not working so hard to breathe??!?!?!?!? The last one would be my guess.
The RT said he is suctioning out a little more today than yesterday (that is good!)
Her lung xray looks slightly improved form the previous xray. (that is good!)
She continues to have diarrhea...possibly form being sick, possibly trying to get rid of the extra fluids in her cells from all the IV fluids.
Yesterday she had the red knees and 1/2 torso and arms that were hot to the touch. It went away and now it is back in her right elbow only (redness and hot to the touch). Then that went away and now her face is red ...so weird...maybe just that histamine reaction the allergist said could happen for a few weeks?!?!?!?!
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| Red face...maybe Histamine reaction? |
Her vent settings are at 26/12. We were able to wean down from 26/14 this morning. (that is good!)
She is satting great. (that is good!)
She has made some small progress overnight and today!
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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.
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.
Bed Sore=Pressure sore. These happen when someone who is non-mobile lays or sits in one position for an extended period of time. When someone is dehydrated they are much more likely to develop bed sores. When you are dehydrated your cells are flat instead of puffy, so the pressure from sitting or laying causes the cells/skin in an area to get red and to eventually become an open wound in left untreated. Once a bed sore has formed on a certain area of the body the cells will NEVER fully heal. It is like a scar. The person will ALWAYS be more likely to get bed sores in that area for the rest of their life. You are more likely to get bed sores on your "bony prominences", these include your ears, occipital (back of your head), elbows, ankles, heels. Ellie is not mobile. She moves her arms a tiny bit and her head a tiny bit...but other than that she basically lays there...so she is very prone to getting bed sores. It is especially difficult when she is really sick and her airway is so fragile that sometimes to protect her airway, you realistically just have to let her lay there in a certain position to keep her alive.
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.
Cardiology= Heart Dr.
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")
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")
Dressings= bandages, etc
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
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.
Lasix= An IV medication used to get off the extra fluids stored in your cells (when you are puffy or retaining fluids (from the IV fluids). Sometimes it is necessary to give lasix, but (at least with Ellie) it often leads to a vicious cycle of peeing out fluids, then her electrolytes drop, they they replace the electrolytes with more IV fluids, then her cells hold onto the fluids (She gets puffy), then they want to do more lasix.
Lasix= An IV medication used to get off the extra fluids stored in your cells (when you are puffy or retaining fluids (from the IV fluids). Sometimes it is necessary to give lasix, but (at least with Ellie) it often leads to a vicious cycle of peeing out fluids, then her electrolytes drop, they they replace the electrolytes with more IV fluids, then her cells hold onto the fluids (She gets puffy), then they want to do more lasix.
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.
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.
Pressure Sore= See Bed Sore
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).
Protected Brush= It is gathering a sample from the lungs to see what (if any) bugs are growing in the lungs. You can only do a protected brush if the person is intubated (and I think you can do it if they are trached also). A long flexible tube is put down the intubation tube and when they hit the lungs they extend a small pipe cleaner type device from inside the tube. They then retract the pipe cleaner back into the tube and pull the tube back out.
Pseudomonas=A bug that likes to grow in the lungs. It is a common bug to grow if you have a trach or have recurring pneumonia. Ellie currently has pseudomonas and has had it before. It is very hard to kill permanently. Once someone gets pseudomonas they are likely to get it again.
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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