Last night before bed they wanted to go 9 hours between blood sugar *draws. I said no way. That is way to long. She is not getting her proglycem. The only reason her BG is high right now is because she is sick. As she gets better her BG will return to VERY low (her normal.) And when that happens we need to restart her proglycem to block her insulin to bring her BG to normal.
Since we don't know when her BG is going to go lower, we cannot risk going longer than 4 hours between checking her BG.
They agreed to do what I said, I don't know if they agreed with me, but they did it, so that's what matters.
9 AM
All through the night her sats were wayyyyyy better than they have been. I would say we have been satting low 90's (92-93) during the day yesterday. Then every time I woke up during the night her sats were 97-98! Woo hoo!
When I got up this morning and said hello to Ellie I noticed right away she felt cold. Cold is normal. (This next sentence is going to sound terrible..but it's true) She has been fevering and with her fevers she has felt like a "normal" body temperature or maybe even slightly warm.
Because she felt cold I asked her nurse what her temp was and she said 34 point something (the nurse didn't say point something...I just can't remember...hahahahaha!). That is in Ellie's normal range. Yea!
Ellie's normal temp is 93 F (33.9 C) to 95.5 F (35.3 C). So 34 is smack dab in her normal range!
I tossed a warm (fuzzy) blanket on her. Her temp is something we constant fight. It is her normal. When we are not fighting her temp...it means she is sick. I know it sounds weird...but that's the way it is.
Rounding 9:30 AM
The Dr.'s rounded on Ellie and said that they wanted to do a blood transfusion. They went over the risks (allergic reaction, infection) and I said great. They are giving her red blood cells.
Her platelette's are also low...but they are just watching them for now.
Since her BG have been stable (between 100 and 200) they wanted to extend the times we check her BG to 6 hours. I once again said I was not comfortable going longer than 4 (even 4 is pushing my comfort limits). They said that was fine, we could keep 4 hour BG checks.
They are worried about taking so much blood...but I feel like we should definitely not go longer than 4 hours at this point.
Her xray looks improved this morning. One of the signs they look for is if you can see the *diaphragm. If the lungs are bad you can't see the diaphragm behind the lungs. If the lungs have better *aeration then you will be able to see the diaphragm through the lungs. On this morning's xray you CAN now see the diaphragm.
They are going to try lowering her PEEP (constant pressure ) from 14 to 13. They haven't done it yet (as of 11:25 AM).
11:30 AM
We just had a bunch of specialists come by one after another...I will see if I can remember everything.
First they started the red blood cells.
Then they checked her BG and it was 62 (low). Thank goodness I stuck with my guns of checking every 4 hours. They ordered a bolus of D10. D stands for dextrose. It is basically sugar water they put through her IV. They checked her BG 15 min later and it was 117 (normal). I requested that they recheck every 15 minutes for at least an hour. She has had times in the past when she has been low and we bring it up and then it crashes back down, then we bring it back up and it crashes back down. The Dr.'s agreed to recheck every 15 min.
Dermatology
Ear sore grew yeast. Doing mupirocin ointment.
Scalp sores grew the kind of staph that is on everyone's skin. They are not worried about them. If they get worse, we will biopsy, but if they get better, then don't worry about it.
Wound Nurse
Ear wound is looking much better. Scalp is looking about the same, possibly slightly better.
After wound nurse left we saw that ...
Bum has an open tear from so much diarrhea. Doing barrier cream. I am trying to drill into the nurses heads to LEAVE THE CREAM ALONE. Do not wipe it off to inspect her skin or clean her, that causes more damage to the skin. If there is poop, yes, clean it off, but otherwise...leave it alone.
New wound inside right elbow. We saw it after wound nurse left. She has had this kind of wound inside her palm before. It happens right on the crease and is caused by moisture and the crease always staying like that...so because she doesn't straighten her arms moisture just sits in that little crease. I stuck some silver infused fabric in the crease. We can talk to wound about it tomorrow. The fabric is wicking and silver has natural antibacterial properties.
Infectious Disease
Protected brush (sample from lungs) grew out a VERY resistant pseudomonas. It is a super bug. It is MDRO (Multi-Drug Resistant Organism). It is basically resistant to all antibiotics. This is bad news. There are only 2 things they can put her on. And they are putting her on both. One is an *inhaled tobi (tobrimicin). Lots of kids with CF (Cystic Fibrosis) inhale tobi all of the time. (Remember that pseudomonas is common in people with CF, people with trachs and people who get recurring lung infections (pneumonias).) The other antibiotic is an older antibiotics with some potentially bad side effects. It is called colistin. It can affect liver function. Great! But it is literally our only option.
We now have to up her *precautions while in the hospital. They don't want the MDRO to spread to other patients.
GRRRRR...I am so bummed about this MDRO. She had a super bug before. It grew from her lower back infection that she got with her spinal surgery. It meant a PICC line at home and 6 months of antibiotics. Then it came back and we had to do another 6 months of antibiotics.
Because the infection was inside of her they couldn't retest if the super bug was gone...she had to be on precautions for 5 years every time we came to the hospital. That means she couldn't leave her room to go on a walk, she couldn't go to the play room, she couldn't go to the music room, she couldn't take a bath (except in the bed).
We just barely hit the 5 year mark a few months ago...we were super bug free! Until now...grrrrrrrr.
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I was emotionally fine this morning. Actually I was great. I felt like Ellie had shown some improvement, and she had.
Now I am a wreck. I am worried that they won't be able to kill the super bug. I am worried that this could be an ongoing problem. I am worried that we won't be approved for the medications she will probably need at home. Lots of worries.
I hate telling people (on the blog) that she has a super bug. I feel like she then becomes a leper and an outcast. I worry that people will be afraid of her and not want to love or touch her.
Once she is on the antibiotics the superbug will be at bay and we should be able to kill it. So it will be fine. I am just really stressed and trying to absorb this new news. People with normal immune systems are able to fight off things like this. People with normal lungs and normal immune systems do not grow pseudomonas.
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The way she looks right now...she is fine. I need to bring my thoughts back to the present.
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Jokes:
A bacteria goes into a bar. The bartender says, " We don't serve your kind here". The bacteria says, "What do you mean, I'm staph!"
Why did the germ cross the road?
To get to the other slide
What did 1 germ say to another germ?
You make me sick
Which runs faster a hot or a cold?
A hot, because anyone can catch a cold
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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).
Aeration= Getting air to all areas of the lungs.
Albumin= helps keep fluids in the blood vessels instead of in the cells. Her hands and feet are still puffy so hopefully this will help. Albumin is a blood product, it is protein in the blood. He thinks we have the right amount of fluid in her body, but it is in the wrong areas (it is in the cells instead of in the blood).
Attending= The head Dr. while inpatient. There are usually a Nurse Practitioner (NP) or residents or fellows under the attending.
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.
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")
Diaphragm=an organ between the lungs and abdomen. Helps with breathing.
Draws/Drawing= Removing blood from the body. "Drawing" blood from the body.
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
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.
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.
Inhaled meds= a liquid medicine has air pushed through it and this makes the medicine become on aerosol that the person breathes into their lungs.
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.
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.
PCH= Primary Children's Hospital
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. (see "Vent Settings")
PICC-A central line. Pronounced "pick". This is like a more permanent IV. It is placed in a large vein in one of the arms and a small catheter (tube) is threaded through the vein and empties right above the heart. So when you give IV medicines, the medicine gets to the heart faster. PICC lines do not "blow" or go bad like IV's do. PICC lines have a few small stitches to hold them in place. You do need to be careful with PICC lines to keep them clean, if they get infected, it is very dangerous since it is a line directly to the heart. One advantage to a PICC line is that you can both give IV meds and you can pull back blood from the PICC. You usually cannot pull back blood from an IV. So if you have an IV and you need blood you have to do another poke. Ellie has had at least 2 PICC lines (at 2 different times) before.
PICU=Pediatric Intensive Care Unit
Precautions= Depending on what type of virus/bacteria/illness the person is diagnosed with will determine the type of protection Dr and nurses need to wear when entering a patient's room. It may include a disposable gown (over their clothes), gloves, fluid shield mask, N95 mask, etc... Different precautions are to prevent the spread of disease form 1 person to another in the hopsital.
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
Primary's= Priamary Children's Hospital.
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).
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.
Replace/Replacements= When certain blood numbers are low they will order to "replace" it. So if someone's potassium is low, they might give a potassium supplement to "replace it". In other words, to try and keep blood numbers within normal ranges by giving additional supplements when numbers are 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.
Stoma= surgical hole in the body made for a more permanent purpose. Such as a gtube or trach or colostomy.
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.
Vent settings= An example is PEEP of 14, Pinsp 28, f 12, FiO2 50%. PEEP is Peak End Expitory Pressure. So when the breath is done, how much pressure is the vent still giving just to keep the lungs open. Pinsp is Peak inspitory pressure. So, how much pressure is delivered when the vent gives a breath. FiO2 is the percent of oxygen is in each breath. Room air (the air we breathe) is 21%. There are are other settings, but those are the big ones.
Vitals: HR means heartrate or the number of Beats Per Minute (BPM), Sats is the oxygen in the blood (see "sats"), RR means Respitatory Rate or the number of Breaths per minute. Temp means core body temperature. Ellie's normal vitals are sleeping HR 60-80, awake HR 70-95, sats 93-97, sleeping RR 8-11, awake RR 12-20
Wound Team/Wound Care/Wound Nurses= These are nurses that deal with wounds such as bed sores, sores around stomas (See "stoma"), etc. I do not love them. I feel like I know as much as they do. They come in and take a pic of the wound (which makes you feel like a bad Mom...that you haven't taken care of your child...not true...but Mom's are weird like that). Then they always want to slather on creams and but dressings on everything. My personal opinion on bed sores is that the best thing you can do is leave it open to the air and keep pressure off of the spot. No amount of padding is going to take the pressure off. Positioning is what keeps the pressure off. I don't love creams (especially in the hospital) because with a new nurse every 12 hours...they want to wipe all the cream off to inspect the skin. That causes more damage. Put the cream on and leave it alone.
