Thur 4/20/17...Day 17
No really...I am glad she has a UTI.
Last night she dropped her body temp.
She has dysautonomia (also called autonomic dysregulation). It means her autonomic nervous system has a hard time controlling her autonomic functions. Mostly she struggles with temperature control.
All day, every day her temperature is something we need to have in the back of our mind.
A lot of time instead of getting a fever she will get a low body temperature (which can actually be more dangerous than a fever). Ellie's normal body temperature is 93-95.5 F. She does OK maintaining her temperature in a temperate environment as long as she is healthy.
Last night she dropped to 91. The lowest we have ever seen with her is 86 F (yes...the Dr.'s were freaking out...ha ha! Funny looking back...not funny then).
So when her temperature has been really stable and then it drops, you think of it like a fever. Meaning...you think she probably has an infection or a new bug or something is going on.
So she had the low body temp, her blood pressure was elevated, heartrate was elevated and a couple other small symptoms led us to send off blood and urine samples last night.
I suggested yesterday that we lower or eliminate her night-time breathing treatments. I thought ...
#1) I don't want to get up every 4 hours at home
#2) I thought she would get better sleep
#3) When they come do the breathing treatments, it wakes her up and then she doesn't go back to sleep and then she fights the bipap. So I postulated that perhaps her co2 would be better if she slept better, because it would be allowing the bipap to do it's job.
So last night she got no breathing treatments and she had her best CO2 for this whole hospital stay.
We are saying that we are OK with a CO2 of 50-55 for her (not the rest of us). And that is where her "good" readings have been. This morning her CO2 was 48! Woo hoo!
Overnight she spiked a low grade fever of 97.5 (low grade for her). Her blood pressure and heartrate were still high.
I was pretty convinced it was a UTI.
The Resident came in and said "Good News, her UA (Urinalysis) (Quick look at urine) was clean." No UTI.
I said "that's bad news".
He said, "why is that bad news?"
I said, " because having an answer is ALWAYS better than not having an answer. UTI's are easy to treat. You don't get fevers and elevated HR and BP for no reason. So now it is going to be some other bug that is worse."
He said "maybe you are right."
Of course I'm right, my young padawan. You have many lessons yet to learn. I am just joking. I have actually really liked the resident and intern we have had this hospital stay. Which is unusual for me...they usually just drive me crazy.
So then an hour or so later when the Dr. and resident rounded (came around to talk about each patient individually) they said her culture was positve for a UTI. A culture is a longer look at a specimen where they try to grow any bugs/bacteria/virus' that may be in the sample.
She was growing ecoli, which they said is the most common UTI.
It is easily treatable with oral antibiotics. Yea! Good news.
I asked the Dr.'s, "So, home tomorrow?"
They said, " you choose if you want to go home today or tomorrow."
I said, "Let me think about it."
I know that sounds weird, if a Dr. says you can go home today...why wouldn't you want to?
These were the things I needed to discuss with Jason.
#1) She had had an elevated blood pressure just this morning. Although we now had an answer, I do not check BP at home. So I would not know that it was resolved.
#2) We had eliminated the 2 overnight breathing treatments last night and today eliminated 1 of her day treatments. Which means we are going from 6 treatments to 3 within 24 hours. That is a huge jump.
#3) I didn't want to rebound, once you are home...it is so hard (for everyone) to come back really soon.
Jason and I decided to wait one more night and come home tomorrow (Fri).
Now I am not superstitious in my everyday life, but in reference to Ellie and her medical needs I am HYPER-superstitious. So I hate to even say she has a possibility of coming home tomorrow because I feel like it is jinxing it. So really quick, find some wood to knock and throw some salt over your shoulder.
We will be coming home with nasal canula during the day (still at 1/4 liter, which is really low) and bipap at 16/8 at night with a rate of 12.
We are risking being back at PCH with pneumonia in 6 weeks by doing bipap at night. But we will really only know once we try it.
Thursday, April 20, 2017
Wednesday, April 19, 2017
Emotional Break down
Let me start off by saying Ellie is fine. Ellie is improving each day.
I (Mom) had a rough day yesterday (Tuesday). I was emotional and was honestly just not up to blogging.
There wasn't really anything big, bad or scary. Nothing new. Just the same stuff viewed in a different light with different wording that threw me off an emotional cliff.
Once again, everything is fine.
Most times in my life I am able to forget about Ellie's disabilities. I know that sounds strange. But it's true. I see her and love her as she is. She is beautiful and smart and patient and kind. She is my daughter. She is a sister. She is a daughter of God. She is perfect just the way she is. This is the way I see her. But sometimes something small happens and an earthly reality sets in and I realize how fragile life is and she is.
I will give you an example. One time a girlfriend (C.F.) and I took our kids to a local train park. Do you remember C.F.? They have big and small trains that you can ride on. The small train is like on "Silver Spoons" TV show. Where you straddle the small train and ride around on train tracks. The train goes about 1 mile an hour. Ellie was about 2 or 3 at the time and I could easily hold her. So I was planning on holding her on my lap and we could ride the train together. The train owner would not allow anyone to be held. Ellie could not ride the train. It broke my heart.
For some reason that experience, although a tiny thing, really hurt me. I realized in that instant that Ellie's life would never be normal. Of course I knew this intellectually because my at 3 years old she couldn't roll-over, sit up, talk, walk, or hold up her head. But I still had it in my heart that she could participate in everything, it would just take some adaptations. I don't remember how I acted. Knowing my personality, I probably over-reacted and acted poorly. I do remember that I cried due to the unseen future of lost experiences that had just been heaped upon me.
Well Tues one of those realities hit me.
Monday 4/17/17 Day 14
She got a new Dr. on Monday. He is really really kind. And he has a way of saying things in the worst possible way, but in the kindest way imaginable. It is a strange combination.
He said that her lungs sounded STIFF. No one else has used this word to describe her lungs. Other people say they sound "diminished", or "I don't hear good air flow", or "The bases (of the lungs) are really quiet". These are terms I have heard a lot of times before. But not STIFF.
He mentioned they were stiff on Monday.
Monday day and night her CO2 readings were good both on Bipap and on breathing trials.
So Monday night they decided to try her off bipap completely overnight (only on a nasal canula). We did a blood gas at bedtime. Then another at 2 AM. If it was unchanged at 2 AM she would continue to morning and they would do another blood gas in the morning. At 2 AM her bloodgas had risen (meaning she was retaining CO2) so she had to go back on bipap.
I (Mom) couldn't stop my brain from thinking worst case scenarios and couldn't get back to sleep for 2 hours. So I was tired the next day. (This was probably the main reason Tues was an emotional/overwhelming day for me).
Tuesday 4/18/17 Day 15
Tuesday the New Dr. wanted to increase her baclofen (medicine to relax tight muscles) to help with the stiffness. They had talked with Comprehensive Care and Pulmonology on Monday and they were both on board with increasing the baclofen. (This was confusing because look which Dr.'s I list below)
I resisted on increasing the baclofen because we have just been weaning down on the baclofen.
She has had 3 Dr.'s suggest going down on baclofen (Comprehensive Care, Neurology and Pulmonology) in order to help with...
-sleepiness
-bowel regularity (you need some muscle tone---tightness)
-trying to regain tone (tightness) to control secretions to prevent pneumonia
-and higher baclofen can lead to a lower seizure threshold (meaning more likely to have seizures).
So those were the reasons we had been lowering baclofen. Now they wanted us to increase baclofen.
I didn't say no, but I listed the reasons I just listed as to why we had been decreasing baclofen.
I suggested that comprehensive care come and score her arms and legs. Comp Care Dr.'s score stiff joints/muscles on a 1 to 5 scale based on how tight they are. I thought if they could score her then we could know how much tighter she was from her last visit and then we could make a decision whether or not to increase the baclofen.
They agreed, but comprehensive care has never come over.
It felt like yes, we should increase her baclofen for her lungs, but for a million other reasons, no we shouldn't. It is hard when you feel like you can't make a good medical decision. All medical decisions have consequences and it is hard when there are bad consequences with either decision you make.
When we discussed the blood gases she had had I asked how they compare with previous blood gases from previous years. They were similar. She pretty much only has blood gases done when she is really sick in the hospital So that may not be a good comparison. But at least they are not worse.
The new Dr. said that if someone came into the ED with those blood gases they would be admitted with that as their only symptom. So although we were calling them "good" blood gases. They really aren't. But it may be the best we can get without going to a trach and ventilator.
I spoke with someone from Rainbow Kids yesterday and she pointed out that the decision to do a trach or not may come down to quality of life versus quantity of life. How can anyone be asked to make that decision?
Would her quality of life go down if she got a trach? I don't know. Would our family's quality of life go down if she got a trach? I don't know. That is what makes it hard.
Her secretions have been greatly decreased (so she is much improved). Her airflow is sounding much better. I thought because of those things and her amazing oxygen sats (o2 in her blood) that her chest xray would look amazing.
It didn't.
This is the point of day when I started crying. The xray was slightly improved, but not as fantastic as I had imagined.
They had to remind me that her lungs had been bad before getting the virus and that xrays lag behind physical symptoms. And they "treat the patient not the film.". OK, OK. But I still thought in my mind that they would be better.
It is hard when your expectations so not match reality...in all aspects of life.
The Dr. asked me why I was crying. I said, "Because most of the time I can forget that Ellie is going to die, but sometimes I remember."
(DO NOT MISINTERPRET>>> SHE IS NOT DYING RIGHT NOW>>>BUT SOMEDAY)
I know that sounds dramatic, but feelings are what they are. I learned a long time ago that you can't change feelings, Feelings are just that, Feelings. The way you feel at a given moment. You can only change your reaction to feelings.
The Dr. said he wanted to come back and talk about the "bigger picture". If you have had a child with disabilities long enough you know this means they want to talk about "end of life decisions". (ONCE AGAIN>>>SHE IS NOT DYING RIGHT NOW). Dr.'s always want you to make these decisions ahead of time. Jason and I already have a plan...it is called..."Do everything to save her".
There was a time when she was literally near death and Jason and I had made a decision that if her heart gave out we did not want anything done to save her. She pulled through. So we went back to our stand-by plan of "Do everything to save her".
There may come a time when Jason and I need to make tough decisions regarding end of life. But that time is not now, so stop bugging me.
Sorry if this line of thought disturbs you, it is a difficult topic for everyone. Unfortunately when you have a medically complex child it comes up A LOT! I have had 4 different professionals mention it at this hospital stay alone. And she is not even dying or that sick. It gets old. Maybe Ellie and I could get matching tattoo's saying "We don't do end of life!" Or something like that...ha ha!
As a preface to the next few paragraphs, her new Dr. is not a member of my faith (The Church of Jesus Christ of Latter-Day Saints). As I thought back on the Dr.'s words of "looking at the bigger picture". I realized he was right. But not in the way he intended. He meant that we needed to weigh end of life and trach and quality and quantity of life. Lots of seemingly "big picture" kinds of things.
But I realized, the actual big picture is that Ellie is a "daughter of her Heavenly Father who loves her and she loves Him." Yes, someday she will die. Her body will be buried and decompose into dust. I will miss her, but she will be free. The really big picture is that her spirit will live on. Her spirit will return to live with her Heavenly Father. All the seemingly big decisions facing us right now are really not that meaningful in the long run. Ellie's salvation is sure.
I testify that our spirits were created by a Heavenly Father (God) and Heavenly Mother. They love each of us individually beyond what our mortal minds can comprehend. We learned and progressed as much as we could while we lived with our Heavenly parents.
As spirits, we came to a time and place where we could no longer improve ourselves without a change taking place. We made a conscious decision to follow God's plan for us. This meant that we would come to earth and our spirits would be placed in a mortal frame, a physical body. A body created by 2 mortals (2 human beings of flesh and blood).
On this Earth in our physical body we would be tested an tried. We would learn and grow. Just like we did in heaven before coming here. We would make the conscious decision (just like before) whether or not we wanted to follow God's plan for us.
We would not be perfect. We could not be perfect, we are limited by a mortal body. So God sent his Son (our brother) Jesus Christ to suffer and die for us, for me, for Ellie. This was only possible because Jesus was half mortal and half Immortal. His Mother was mortal (Mary) and his Father was immortal (God). A mortal alone could not have accomplished the task. And immortal alone could not have accomplished the task. Our differences are made up by Christ's everlasting atonement and resurrection.
Due to Christ's sacrifice, when we die, our spirits will return to live with our Heavenly Parents once again. Where we will have the chance to learn and grow some more. It is a pattern which God set forth. I close this testimony in the name of Jesus Christ Amen.
***********************
Tuesday during the day they had her do a 4 hour breathing trial and then check her blood gas. It was awesome. Then they left her off bipap for another 2 hours and recheck blood gas. It was awesome. They repeated this process all day yesterday. She was off bipap ALL DAY YESTERDAY! And all blood gases were at HER good level.
Then because I was tired from stressing the night before and lack of sleep and crying that morning I was wiped out. I asked the nurse and tech to get their stuff done and I was taking a 2 hour nap. I taped a sign on the door and got in a nap. It helped about 70%.
Tuesday night she went back on bipap all night. But they tried a lower setting of 14/7 instead of 16/8. Her blood gas in the morning was up (bad). So she was not ready for those settings yet.
She has had several nights in a row now with no desats...amazing. If we could keep that up at home, life would be sooooooooo much better.
Wed (TODAY) 4/19/17 Day 16
This morning, after a good night's sleep, I was feeling much better.
Today she has been off bipap (on Nasal canula only) all day again. They were checking a Blood Gas at 2 PM and then again at bedtime. I have been able to wean her down to 1/4 liter of o2, which is not much. I tried .12 liters this morning, but she only lasted 5 minutes before dropping her sats.
She sounded a little course at noon today. But that was right before a schedule breathing treatment(vibrating vest, nebulized meds and suctioning). It is OK.
Tonight we are going to go back to the higher 16/8 pressure and leave her on bipap all night. But we will stop doing breathing treatments during the night and only continue them every 4 hours during the day. We will see how she is in the morning.
The plan for going home (I think) is she will go home on bipap at night and room air/nasal canula during the day. We are risking recurring pneumonia like she used to have 18 months ago. I am willing to try it.
We do several things differently now than we did 18 months ago.
We follow CF protocol (Cystic Fibrosis)...NO SHE DOES NOT HAVE CYSITC FIBROSIS...BUT SHE DOES A LOT OF THE SAME TREATMENTS.
-We sterilize everything that has touched her mouth or nose (we wash in soap and water and then use a baby bottle sterilizer) (ie: nebulizer masks, toothbrush, bipap masks, etc...)
-After we brush her teeth, we use mouthwash to try and kill any remaining germs in her mouth.
-We use new suction supplies with every suction.
-We suction and brush teeth at the same time which causes a bigger cough to clear out lungs.
So their is a chance that we can avoid pneumonia if it was caused by dirty germs and not the secretions getting pushed down deeper into her lungs. (We were not dirty before...but we were only using soap and water for example and not the high temp bottle sterilizer)
We won't know until we go home and try.
Here is the link to send notes to Ellie, she loves them. https://intermountainhealthcare.org/locations/primary-childrens-hospital/hospital-information/amenities/email-a-patient/
I (Mom) had a rough day yesterday (Tuesday). I was emotional and was honestly just not up to blogging.
There wasn't really anything big, bad or scary. Nothing new. Just the same stuff viewed in a different light with different wording that threw me off an emotional cliff.
Once again, everything is fine.
Most times in my life I am able to forget about Ellie's disabilities. I know that sounds strange. But it's true. I see her and love her as she is. She is beautiful and smart and patient and kind. She is my daughter. She is a sister. She is a daughter of God. She is perfect just the way she is. This is the way I see her. But sometimes something small happens and an earthly reality sets in and I realize how fragile life is and she is.
I will give you an example. One time a girlfriend (C.F.) and I took our kids to a local train park. Do you remember C.F.? They have big and small trains that you can ride on. The small train is like on "Silver Spoons" TV show. Where you straddle the small train and ride around on train tracks. The train goes about 1 mile an hour. Ellie was about 2 or 3 at the time and I could easily hold her. So I was planning on holding her on my lap and we could ride the train together. The train owner would not allow anyone to be held. Ellie could not ride the train. It broke my heart.
For some reason that experience, although a tiny thing, really hurt me. I realized in that instant that Ellie's life would never be normal. Of course I knew this intellectually because my at 3 years old she couldn't roll-over, sit up, talk, walk, or hold up her head. But I still had it in my heart that she could participate in everything, it would just take some adaptations. I don't remember how I acted. Knowing my personality, I probably over-reacted and acted poorly. I do remember that I cried due to the unseen future of lost experiences that had just been heaped upon me.
Well Tues one of those realities hit me.
Monday 4/17/17 Day 14
She got a new Dr. on Monday. He is really really kind. And he has a way of saying things in the worst possible way, but in the kindest way imaginable. It is a strange combination.
He said that her lungs sounded STIFF. No one else has used this word to describe her lungs. Other people say they sound "diminished", or "I don't hear good air flow", or "The bases (of the lungs) are really quiet". These are terms I have heard a lot of times before. But not STIFF.
He mentioned they were stiff on Monday.
Monday day and night her CO2 readings were good both on Bipap and on breathing trials.
So Monday night they decided to try her off bipap completely overnight (only on a nasal canula). We did a blood gas at bedtime. Then another at 2 AM. If it was unchanged at 2 AM she would continue to morning and they would do another blood gas in the morning. At 2 AM her bloodgas had risen (meaning she was retaining CO2) so she had to go back on bipap.
I (Mom) couldn't stop my brain from thinking worst case scenarios and couldn't get back to sleep for 2 hours. So I was tired the next day. (This was probably the main reason Tues was an emotional/overwhelming day for me).
Tuesday 4/18/17 Day 15
Tuesday the New Dr. wanted to increase her baclofen (medicine to relax tight muscles) to help with the stiffness. They had talked with Comprehensive Care and Pulmonology on Monday and they were both on board with increasing the baclofen. (This was confusing because look which Dr.'s I list below)
I resisted on increasing the baclofen because we have just been weaning down on the baclofen.
She has had 3 Dr.'s suggest going down on baclofen (Comprehensive Care, Neurology and Pulmonology) in order to help with...
-sleepiness
-bowel regularity (you need some muscle tone---tightness)
-trying to regain tone (tightness) to control secretions to prevent pneumonia
-and higher baclofen can lead to a lower seizure threshold (meaning more likely to have seizures).
So those were the reasons we had been lowering baclofen. Now they wanted us to increase baclofen.
I didn't say no, but I listed the reasons I just listed as to why we had been decreasing baclofen.
I suggested that comprehensive care come and score her arms and legs. Comp Care Dr.'s score stiff joints/muscles on a 1 to 5 scale based on how tight they are. I thought if they could score her then we could know how much tighter she was from her last visit and then we could make a decision whether or not to increase the baclofen.
They agreed, but comprehensive care has never come over.
It felt like yes, we should increase her baclofen for her lungs, but for a million other reasons, no we shouldn't. It is hard when you feel like you can't make a good medical decision. All medical decisions have consequences and it is hard when there are bad consequences with either decision you make.
When we discussed the blood gases she had had I asked how they compare with previous blood gases from previous years. They were similar. She pretty much only has blood gases done when she is really sick in the hospital So that may not be a good comparison. But at least they are not worse.
The new Dr. said that if someone came into the ED with those blood gases they would be admitted with that as their only symptom. So although we were calling them "good" blood gases. They really aren't. But it may be the best we can get without going to a trach and ventilator.
I spoke with someone from Rainbow Kids yesterday and she pointed out that the decision to do a trach or not may come down to quality of life versus quantity of life. How can anyone be asked to make that decision?
Would her quality of life go down if she got a trach? I don't know. Would our family's quality of life go down if she got a trach? I don't know. That is what makes it hard.
Her secretions have been greatly decreased (so she is much improved). Her airflow is sounding much better. I thought because of those things and her amazing oxygen sats (o2 in her blood) that her chest xray would look amazing.
It didn't.
This is the point of day when I started crying. The xray was slightly improved, but not as fantastic as I had imagined.
They had to remind me that her lungs had been bad before getting the virus and that xrays lag behind physical symptoms. And they "treat the patient not the film.". OK, OK. But I still thought in my mind that they would be better.
It is hard when your expectations so not match reality...in all aspects of life.
The Dr. asked me why I was crying. I said, "Because most of the time I can forget that Ellie is going to die, but sometimes I remember."
(DO NOT MISINTERPRET>>> SHE IS NOT DYING RIGHT NOW>>>BUT SOMEDAY)
I know that sounds dramatic, but feelings are what they are. I learned a long time ago that you can't change feelings, Feelings are just that, Feelings. The way you feel at a given moment. You can only change your reaction to feelings.
The Dr. said he wanted to come back and talk about the "bigger picture". If you have had a child with disabilities long enough you know this means they want to talk about "end of life decisions". (ONCE AGAIN>>>SHE IS NOT DYING RIGHT NOW). Dr.'s always want you to make these decisions ahead of time. Jason and I already have a plan...it is called..."Do everything to save her".
There was a time when she was literally near death and Jason and I had made a decision that if her heart gave out we did not want anything done to save her. She pulled through. So we went back to our stand-by plan of "Do everything to save her".
There may come a time when Jason and I need to make tough decisions regarding end of life. But that time is not now, so stop bugging me.
Sorry if this line of thought disturbs you, it is a difficult topic for everyone. Unfortunately when you have a medically complex child it comes up A LOT! I have had 4 different professionals mention it at this hospital stay alone. And she is not even dying or that sick. It gets old. Maybe Ellie and I could get matching tattoo's saying "We don't do end of life!" Or something like that...ha ha!
As a preface to the next few paragraphs, her new Dr. is not a member of my faith (The Church of Jesus Christ of Latter-Day Saints). As I thought back on the Dr.'s words of "looking at the bigger picture". I realized he was right. But not in the way he intended. He meant that we needed to weigh end of life and trach and quality and quantity of life. Lots of seemingly "big picture" kinds of things.
But I realized, the actual big picture is that Ellie is a "daughter of her Heavenly Father who loves her and she loves Him." Yes, someday she will die. Her body will be buried and decompose into dust. I will miss her, but she will be free. The really big picture is that her spirit will live on. Her spirit will return to live with her Heavenly Father. All the seemingly big decisions facing us right now are really not that meaningful in the long run. Ellie's salvation is sure.
I testify that our spirits were created by a Heavenly Father (God) and Heavenly Mother. They love each of us individually beyond what our mortal minds can comprehend. We learned and progressed as much as we could while we lived with our Heavenly parents.
As spirits, we came to a time and place where we could no longer improve ourselves without a change taking place. We made a conscious decision to follow God's plan for us. This meant that we would come to earth and our spirits would be placed in a mortal frame, a physical body. A body created by 2 mortals (2 human beings of flesh and blood).
On this Earth in our physical body we would be tested an tried. We would learn and grow. Just like we did in heaven before coming here. We would make the conscious decision (just like before) whether or not we wanted to follow God's plan for us.
We would not be perfect. We could not be perfect, we are limited by a mortal body. So God sent his Son (our brother) Jesus Christ to suffer and die for us, for me, for Ellie. This was only possible because Jesus was half mortal and half Immortal. His Mother was mortal (Mary) and his Father was immortal (God). A mortal alone could not have accomplished the task. And immortal alone could not have accomplished the task. Our differences are made up by Christ's everlasting atonement and resurrection.
Due to Christ's sacrifice, when we die, our spirits will return to live with our Heavenly Parents once again. Where we will have the chance to learn and grow some more. It is a pattern which God set forth. I close this testimony in the name of Jesus Christ Amen.
***********************
Tuesday during the day they had her do a 4 hour breathing trial and then check her blood gas. It was awesome. Then they left her off bipap for another 2 hours and recheck blood gas. It was awesome. They repeated this process all day yesterday. She was off bipap ALL DAY YESTERDAY! And all blood gases were at HER good level.
Then because I was tired from stressing the night before and lack of sleep and crying that morning I was wiped out. I asked the nurse and tech to get their stuff done and I was taking a 2 hour nap. I taped a sign on the door and got in a nap. It helped about 70%.
Tuesday night she went back on bipap all night. But they tried a lower setting of 14/7 instead of 16/8. Her blood gas in the morning was up (bad). So she was not ready for those settings yet.
She has had several nights in a row now with no desats...amazing. If we could keep that up at home, life would be sooooooooo much better.
Wed (TODAY) 4/19/17 Day 16
This morning, after a good night's sleep, I was feeling much better.
Today she has been off bipap (on Nasal canula only) all day again. They were checking a Blood Gas at 2 PM and then again at bedtime. I have been able to wean her down to 1/4 liter of o2, which is not much. I tried .12 liters this morning, but she only lasted 5 minutes before dropping her sats.
She sounded a little course at noon today. But that was right before a schedule breathing treatment(vibrating vest, nebulized meds and suctioning). It is OK.
Tonight we are going to go back to the higher 16/8 pressure and leave her on bipap all night. But we will stop doing breathing treatments during the night and only continue them every 4 hours during the day. We will see how she is in the morning.
The plan for going home (I think) is she will go home on bipap at night and room air/nasal canula during the day. We are risking recurring pneumonia like she used to have 18 months ago. I am willing to try it.
We do several things differently now than we did 18 months ago.
We follow CF protocol (Cystic Fibrosis)...NO SHE DOES NOT HAVE CYSITC FIBROSIS...BUT SHE DOES A LOT OF THE SAME TREATMENTS.
-We sterilize everything that has touched her mouth or nose (we wash in soap and water and then use a baby bottle sterilizer) (ie: nebulizer masks, toothbrush, bipap masks, etc...)
-After we brush her teeth, we use mouthwash to try and kill any remaining germs in her mouth.
-We use new suction supplies with every suction.
-We suction and brush teeth at the same time which causes a bigger cough to clear out lungs.
So their is a chance that we can avoid pneumonia if it was caused by dirty germs and not the secretions getting pushed down deeper into her lungs. (We were not dirty before...but we were only using soap and water for example and not the high temp bottle sterilizer)
We won't know until we go home and try.
Here is the link to send notes to Ellie, she loves them. https://intermountainhealthcare.org/locations/primary-childrens-hospital/hospital-information/amenities/email-a-patient/
Hospital Gossip
The current Ronald McDonald Family Room is 3500 square feet and is the largest family room in the world! Wow!
They are making a 2nd Ronald McDonald Family Room at Primary Children's. It will be on the 2nd floor where the current PICU waiting room is. There will be...
-A shower (good, because the existing ones are disgusting)
-Laundry facilities (good because there are no current options for PICU except on the 3rd floor in the existing family room.).
-Some sleep rooms (good because it is hard for parents to sleep in PICU)
-And a small PICU waiting room.
Just south of the parking lot between PCH and Moran they are making a School of Medicine.
They are making a 2nd Ronald McDonald Family Room at Primary Children's. It will be on the 2nd floor where the current PICU waiting room is. There will be...
-A shower (good, because the existing ones are disgusting)
-Laundry facilities (good because there are no current options for PICU except on the 3rd floor in the existing family room.).
-Some sleep rooms (good because it is hard for parents to sleep in PICU)
-And a small PICU waiting room.
Just south of the parking lot between PCH and Moran they are making a School of Medicine.
Getting to "The Point" (A cafe at Huntsman Institute)
There is a really yummy cafe on the top floor of the Huntsman Cancer Institute. They are open for lunch until 2 PM. It is slightly pricey for hospital food, about $8 for an entrée. But it is yummy. There are soups, salad of the day, sandwich bar, entrée of the day, they have a visiting restaurant of the day, scrumptious desserts and a Starbucks. There are large windows overlooking the valley with unbelievable views.
Primary Children's is connected by bridges to the Moran Eye Center, University of Utah Hospital and Huntsman Cancer Institute. So you can walk all the way to "The Point" (at Huntsman) without ever going outside.
Here are some instructions that Rainbow Kids (a program here at Primary's) put together and then I made some modifications and clarifications.
To get to The Point
1. Go to the 4th floor of PCMC.
2. Go to the South end (by orhtopedics and ophthalmology).
3. Take the sky bridge to University Hospital.
4. Go through the lobby area to the right of the escalators (DO NOT GO UP THE ESCALATORS).
4. Go through the lobby area to the right of the escalators (DO NOT GO UP THE ESCALATORS).
5. Take the A elevators.
6. Take elevators to the 3rd floor.
6. Take elevators to the 3rd floor.
7. Turn left off the elevator.
8. Then left down the hall.
9. Follow the hall past Surgery Waiting Room.
10. Go over the glass bridge into Huntsman Cancer Institute.
11. At the end of the bridge (you will see a red brick wall) turn right
12. Turn left.
13. Follow the hall to the end.
14. The elevators will be on the left.
15. Take the elevators to the 4th floor.
16. When exiting the elevator, stay in the building and turn left.
17. Follow a long hall with great photography.
18. When you come to the end of the hall, turn right and go down the hall with more photography.
19. At the end of the hall turn left and take the elevator to the 6th floor.
20. Turn left when you exit the elevator and you are at "The Point".
20. Turn left when you exit the elevator and you are at "The Point".
To come back to Primary's
1. Go back to where you entered the point (very important)
2. Go to the elevators that say "Lower Level & Floors 1-6) above the elevators (very important).
3. In the elevator go to LL
4. Follow the 2 art halls
5. At the elevator go to level 1
6. Follow the hall and you will see the red brick.
7. Half way down the red brick wall turn left and go back over the glass bridge.
8. Go past surgery waiting room.
9. DO NOT go to the end of the hall. When you see a large sign (by ceiling) saying ELEVATOR, follow that to the left.
10. Take the elevator to level A.
11. When you exit the elevator turn Right.
12. Go back through the lobby past the escalators.
13. Keep going straight and exit the double wooden doors which lead you onto the sky bridge.
14. Go on the Sky Bridge and you will end up on the 4th floor of Primary Children's
Did these instructions work for you? What clarifications need to be made? Please comment below.
Monday, April 17, 2017
Get Well Soon Cards
Ellie got 14 get well soon cards through the hospital system. Thank you all! She loved them. Keep them coming. It is quick and free. A volunteer prints them off and delivers them to the child's room.
Here is the link
https://intermountainhealthcare.org/locations/primary-childrens-hospital/hospital-information/amenities/email-a-patient/
Her blood gas this morning at 4:30 was at the end 4 hours on bipap. That's bad.
They are going to do a capillary blood gas at the end of a 4 hour bipap session and at the end of a 2 hour trial (off bipap) to compare the 2.
The picture is Ellie with all of her get well soon cards.
New Dr.
Monday morning 4/17/17... day 14
It is so hard when the hospitalist (inpatient pediatrician) changes.
We got a new one today. He seems really nice. And seems committed to " figuring this out". That sounds good. But with each new Dr. there are different ideas.
New ideas can be good if you want a second opinion, or are looking for new ideas.
But when you had a plan that was good, you don't really need any new ideas.
He said her lungs "sound stiff". And wants to send in the rehab Dr's to possibly adjust her meds or add some meds.
Rehab Dr's deal with tight and loose muscles. They are also known as physiatrists ( But no one calls them that).
Yes, she's tight. She has Cerebral Palsy which is different for everyone, but for her it means loose neck and torso and tight arms and legs.
Cerebral Palsy means that your brain cannot communicate to your body how to move properly.
Sometimes Cp is a speech impediment, sometimes it is a limp, sometimes it means tightness (spasticity or spastic) and sometimes it means looseness.
It is not a muscle problem, it is a brain problem.
It is much harder (if not impossible) to fix a brain problem.
I figured her lungs were tight, but they haven't been expanded for 18 months, since we stopped doing bipap (because of increasing recurring pneumonia).
I figured that is part of why this is taking so long on this hospital stay. We are rehabbing her lungs. Stretching them. Reinflating them.
I don't know that increasing her meds (oral baclofen) or adding in more meds is the solution. I think time is the solution. It takes times to stretch out lungs that have been deflated...I would think. I don't know...but I would imagine.
It's fine. I am happy to talk to rehab. They are the best Dr's at Primary Children's (if they send comprehensive care...not just rehab).
Comprehensive Care Dr.'s deal with medically complicated kids, which we fit the bill. The Dr.'s are all great. They know how to listen to and talk with complicated parents. They truly " get it".
Her blood gas this morning was still bad. The new Dr was not happy with that. We still need to do the chest xray.
She has had good ( normal) blood gas' in past years (not this hospital stay) so I think that's what they are aiming for.
I think her blood gas will improve as her lungs improve. Totally Mikael guessing.
I said, "can't people with chronic lung problems gave higher blood gas ' all the time. They just used to it." He said, "yes, but then if you get any illness you get really sick."
OK, good to know. We don't want that. So yes, we do want to reach good blood gas.
No desats last night, love that!
Secretions with suctioning seem to be improving ( decreasing). Could be increased pressures opening up lungs or virus finally dying down.
She seems more alert. Once again, could be increased pressures or virus dying down.
I thought she was looking awesome. And was thinking we just needed to increade tome off bipap. But now the new Dr and her blood gas have burst my bubble.
I still think she is doing well and will improve with time.
Vitals look amazing this morning. (Picture is on bipap).
Sunday, April 16, 2017
Easter Sunday
I went home to spend time with the other kids and hubby.
The kids did their Easter egg hunt.
My tulips bloomed while Ellie's been in the hospital.
The nurse said Ellie was sleepy today.
It's hard because when I came back to the hospital there were lots of little things that I was less than thrilled with (actions or non-actions on part of the nurse or tech). But Ellie survived, so they are probably not important things. Trying to maintain an even temper. Probably too much sugar making me judgy. Ha ha.
Ellie got an Easter basket from the hospital.
We tried to remember which holidays she has been inpatient for...(2) of Dad's Bdays, (1)Big Bros Bday, (1) little sis (T) Bday, (1) Halloween, (1) Easter, (1) New Years Day, (1) valentine's day, (1) parents anniversary. Multiple friends campouts, Mom and Dad's getaway/business trip to Chicago (so Mom stayed Home).
I would say overall today she has been doing well. It's hard to say since I wasn't here.
She has maintained sats on all trials at 1/2 liter. So that's good.
They did lower the pressure from 18/8 to 16/8.
Tomorrow morning they will do a chest xray and CBG (capillary blood gas). Cbg is a finger poke. Her last blood gas was arterial, but her pulmonologist prefers capillary.
Saturday, April 15, 2017
Superman and spiderman
It is not everyday you get a selfish with superman and spiderman in the same day!
Send a note to a patient
Ellie would love it if you would send her a note. It is free. And only takes a minute.
A hospital volunteer will print it out and deliver it to her room.
Thanks.
Here is the website.
https://intermountainhealthcare.org/locations/primary-childrens-hospital/hospital-information/amenities/email-a-patient/
A hospital volunteer will print it out and deliver it to her room.
Thanks.
Here is the website.
https://intermountainhealthcare.org/locations/primary-childrens-hospital/hospital-information/amenities/email-a-patient/
Bath time
She got a bath this morning including washing her hair! That always helps.
And she is sitting up with real clothes on!
Dry Lips
Sat 4/15/17...day 12
Yesterday after adjusting her pressures up and her rate down she seemed to be doing better.
2 small desats on bipap during night needing suctioning. (This is in addition to the every 4 hours vibrating vest and nebulizer meds and suctioning).
So she still has a lot of junk in lungs to clear.
When the Dr's listened to her this morning (on bipap) they said she was moving good air and had no crackles or focal.points. That is great. Lungs are getting more healthy.
We have 2 goals for this hospital stay.
#1) get mostly over virus...at least enough that we are not needing to suction every 2 hours around the clock.
#2) get lungs open and more healthy. Remember about 2 weeks before coming in we had done a chest xray and the lower lobes ( bottom parts) of both lungs were collapsed and she was needing o2 100% of the time.
These both take time. Some rehab can be done at home. But it needs to be something that we can reasonably do. Which is not where we are at.
She bit her bottom lip with a seizure the other day and plus they are dry from all the bipap air. ( yes it is humidified). I like to use 100% lanolin (nipple cream) on them, but the pharmacy was out for all of last week. I kept asking them every day, and they finally got some in yesterday. So I bought some. We should be good in a day or 2.
Friday, April 14, 2017
Pulmonologist
Fri 4/14/17 Day 11
Her pupils look better today, but are still different sizes.
She is still really sleepy this morning.
We did one trial off bipap this morning. It was supposed to be 2 hours but the RT didn't come back for 3.5 hours. I didn't stress it. She was doing OK. She was sleepy for the first half and then I got her to wake up by brushing her teeth and moving her position every 30 minutes or so.
The Dr.'s from the floor (called hospitalists...they are pediatricians when your own pediatrician is too far away to take care of you while inpatient) said they think your pupil difference is caused by her duo-neb. The duo-neb is an inhaled medicine she gets twice a day at home, but has been doing here every 4 hours. They said it is rare, but a side effect can be one pupil gets enlarged.
I asked the hospitalist how long this virus lasts. Because we are at day 11 in the hospital, but she was sick a few days before coming in, so we are probably on day 15. She said it was anyone's guess. That this is a bad virus and lasts a long time.
I said..."like a year?"
She said "no".
I said "like 6 months?"
She said "no"
I said "like 2 months?"
She said "yes, probably a month or 2."
That doesn't mean we have to be in the hospital that long...but it may take her that long to get over the virus.
Her regular pulmonologist came to see her today. It was good to see her and get some direction from her. She has taken care of Ellie since she was a baby. We love her. The first thing she did when she got to Ellie's room was give me a hug.
I discussed many things with her including ...
-How I felt like she was having more secretions, more desats now on lower bipap settings than she was having last week on higher settings. And is more sleepy now on lower settings.
-How she has been really tired the last 2 days and on the higher settings she was really super awake.
-Is she OK with titrating (changing as needed) her oxygen lower if her sats look good?
-Should we do trials even if she is sleepy, or should we stop them?
-Lowering the rate of her breaths so that it matches her regular breathing better.
-How we really have 2 goals of this hospital stay...#1) get better than we currently are with the virus and #2)get her lungs reinflated and more healthy than they were.
-Plan for going home
We now have a plan. Having a plan is GOOD!!!!!!! We have been in limbo with no one wanting to take care of us for several days now.
We are going to raise her rate back up from where she currently is 14/7 to 18/8. I am hoping this will help with the sleepiness and the junkiness. She seemed really so much better a few days ago on higher settings. The higher settings will hopefully open her lungs up and help her feel better and be able to clear out more junk. and help her sleep better so she is not so tired.
Some people only need cpap. This would be a breath of air at a certain pressure. This would be if you can keep your lungs open between breaths of air. Bipap is for when you need more support than that. The way bipap works is it has 2 numbers. A constant pressure to keep the lungs open and also a breath of air. Ellie needs bipap. The 8 is the constant pressure and the 18 is the pressure for the breath of air.
We are also going to lower the rate on the bipap. The bipap (in our case) is programmed to deliver a certain number of breaths at the specified pressure whether or not she takes any breaths. This is important for Ellie because she has both central and obstructive sleep apnea. Central means your brain forgets to breathe and obstructive means something is physically getting in the way of you breathing.
So we have previously been doing 22 breaths per minute. But as you get older you breathe less frequently per minute. 22 BPM is high for a 14 year old. So they are going to lower the BPM to 12. On her own she typically breathes about 9-10 BPM. It is really slow. But it works for her.
The pulmonologist is fine with titrating (lowering as needed) her oxygen. It has nothing to do with opening up her lungs.
At the end of her trial this morning I titrated her O2 down from 1.5 liters per minute to 1/2 liter per minute and she was maintaining her sats just fine.
We are going to time the trials 4 hours on bipap and 2 hours off bipap over 24 hours. so she will be doing them during the night also. Which will hopefully be fine. She has been maintaining sats even while asleep and wasn't using bipap during the night at home. So hopefully this plan will work.
Possibly Sunday we will change pressures to 16/8.
Monday we will do a chest xray and CBG (Capillary Blood Gas).
Her pupils look better today, but are still different sizes.
She is still really sleepy this morning.
We did one trial off bipap this morning. It was supposed to be 2 hours but the RT didn't come back for 3.5 hours. I didn't stress it. She was doing OK. She was sleepy for the first half and then I got her to wake up by brushing her teeth and moving her position every 30 minutes or so.
The Dr.'s from the floor (called hospitalists...they are pediatricians when your own pediatrician is too far away to take care of you while inpatient) said they think your pupil difference is caused by her duo-neb. The duo-neb is an inhaled medicine she gets twice a day at home, but has been doing here every 4 hours. They said it is rare, but a side effect can be one pupil gets enlarged.
I asked the hospitalist how long this virus lasts. Because we are at day 11 in the hospital, but she was sick a few days before coming in, so we are probably on day 15. She said it was anyone's guess. That this is a bad virus and lasts a long time.
I said..."like a year?"
She said "no".
I said "like 6 months?"
She said "no"
I said "like 2 months?"
She said "yes, probably a month or 2."
That doesn't mean we have to be in the hospital that long...but it may take her that long to get over the virus.
Her regular pulmonologist came to see her today. It was good to see her and get some direction from her. She has taken care of Ellie since she was a baby. We love her. The first thing she did when she got to Ellie's room was give me a hug.
I discussed many things with her including ...
-How I felt like she was having more secretions, more desats now on lower bipap settings than she was having last week on higher settings. And is more sleepy now on lower settings.
-How she has been really tired the last 2 days and on the higher settings she was really super awake.
-Is she OK with titrating (changing as needed) her oxygen lower if her sats look good?
-Should we do trials even if she is sleepy, or should we stop them?
-Lowering the rate of her breaths so that it matches her regular breathing better.
-How we really have 2 goals of this hospital stay...#1) get better than we currently are with the virus and #2)get her lungs reinflated and more healthy than they were.
-Plan for going home
We now have a plan. Having a plan is GOOD!!!!!!! We have been in limbo with no one wanting to take care of us for several days now.
We are going to raise her rate back up from where she currently is 14/7 to 18/8. I am hoping this will help with the sleepiness and the junkiness. She seemed really so much better a few days ago on higher settings. The higher settings will hopefully open her lungs up and help her feel better and be able to clear out more junk. and help her sleep better so she is not so tired.
Some people only need cpap. This would be a breath of air at a certain pressure. This would be if you can keep your lungs open between breaths of air. Bipap is for when you need more support than that. The way bipap works is it has 2 numbers. A constant pressure to keep the lungs open and also a breath of air. Ellie needs bipap. The 8 is the constant pressure and the 18 is the pressure for the breath of air.
We are also going to lower the rate on the bipap. The bipap (in our case) is programmed to deliver a certain number of breaths at the specified pressure whether or not she takes any breaths. This is important for Ellie because she has both central and obstructive sleep apnea. Central means your brain forgets to breathe and obstructive means something is physically getting in the way of you breathing.
So we have previously been doing 22 breaths per minute. But as you get older you breathe less frequently per minute. 22 BPM is high for a 14 year old. So they are going to lower the BPM to 12. On her own she typically breathes about 9-10 BPM. It is really slow. But it works for her.
The pulmonologist is fine with titrating (lowering as needed) her oxygen. It has nothing to do with opening up her lungs.
At the end of her trial this morning I titrated her O2 down from 1.5 liters per minute to 1/2 liter per minute and she was maintaining her sats just fine.
We are going to time the trials 4 hours on bipap and 2 hours off bipap over 24 hours. so she will be doing them during the night also. Which will hopefully be fine. She has been maintaining sats even while asleep and wasn't using bipap during the night at home. So hopefully this plan will work.
Possibly Sunday we will change pressures to 16/8.
Monday we will do a chest xray and CBG (Capillary Blood Gas).
Pupils
Thur 4/13/17 day 10
Life at the hospital is getting old and boring. We have watched all of the edited shows that the hospital shows on their channels multiple times. We have watched Hunger Games II about 4 tines and Princess Diaries I about 3 times. Once you make it through the movies, that means it's time to go home, right?!?!?!
They do have DVD's we can borrow...I think we may have to do that.
When we came to the floor (out of ICU) Wed night the Dr. noticed her pupils were different sizes. She asked if this was normal for her. I said no. But I wasn't concerned...she has an abnormal brain, seizures, hydrocephalus, etc. We decided to just watch it. I was hoping it was temporary and meant nothing.
Wed night was rough...lots of desats...lots of secretions...lots of suctioning. Not much sleep.
She was super tired Thur morning.
And her pupils were still different sizes.
She was so sleepy we couldn't do a breathing trial that morning. Because we have only been doing trials while she is awake.
So with the pupils and sleepiness I started to worry. My mind went immediately to her hydrocephalus.
Hydrocephalus means an increase of fluid in your brain. They used to call it "water on the brain". They do not call it that anymore. It is technically water IN the brain.
We all have fluid (spinal fluid) in pockets in our brain. It serves as a cushion when we bump our head. Our body produces it and reabsorbs it.
Ellie has a larger than normal amount of fluid in her brain. This is called hydrocephalus. Her pockets are much larger than normal allowing there to be more fluid. A larger amount of fluid is not necessarily harmful. It becomes a problem when the fluid becomes under pressure.
Pressure can happen for several reasons. Think of a kitchen sink that is filling and draining at the same time. The water may be filling too fast for the drain to empty. Or the sink may be filling at a normal rate, but the drain is not emptying as fast as it should. It doesn't matter where the problem is happening, you need to relieve the pressure in the pocket.
To relieve the pressure you have to have an operation called a shunt. The neurosurgeon drills through the skull and brain to get to the pocket of fluid. They put a shunt into the fluid. A shunt is a one-way valve, only allowing fluid to come out of the brain, but not back in. It only allows fluid out when it reaches a set amount of pressure.
The one-way valve is connected to several feet of tubing. The tubing runs under your skin and drains into the cavity by your heart or your abdomen. Ellie's drains into her abdomen. (not her stomach).
Ellie ahs had 3 shunts in 14.5 years (only 1 at a time). That is really good. Shunts are known for failing. Sometimes people will have to get multiple shunts every year.
Several years ago her shunt failed and over-drained. The pockets in her brain were empty, so the brain collapsed in and pulled away from the skull. This caused her brain to bleed between the brain and skull. It involved a 3 week hospital stay and 3 surgeries. It was big and bad. The 2 most experienced neurosurgeons at PCH individually told me that this was the worst case they had ever seen. They got her through and got her brain back to 85% the way it had been before.
The only symptom she had when her brain collapsed was that when I would sit her up, then she would be sleepy for 5-10 minutes. Other than that she acted fine.
So with her being sleepy and her pupils being abnormal I thought it could be her hydrocephalus.
So Thur morning the Dr. called for a consult from neurosurgery.
She was still sleepy, but I had a lunch date with another special needs Mom in the cafeteria. I told the nurse before I left that I don't get cell reception in the hospital. So if she needed me, she would need to page me overhead.
She was still sleepy when I left to go down to the cafeteria and occasionally desatting.
We were almost done eating and chatting in the cafeteria when I hear an announcement over the intercom. "Will the parents of Eleanor __________ please return to her room?"
I jumped up, said goodbye and literally ran as fast as I could up the 3 flights of stairs to her room.
During my run I thought, "I didn't hear a code blue." But I still expected to see 20 people crowded in Ellie's room and her to be intubated, or worse.
As I got closer to her room there were NOT a bunch of people there. The nurse told me that neurosurgery came by and wanted to do a CT scan and x-rays to look at her shunt and brain. They were ready for her now, so they paged me.
Whew.
My daughter was not dead.
I am glad they paged me, but I wish they could add something on the intercom like "this is not an emergency, but please return to your child's room."
Although then I wouldn't have gotten my 5 minutes of exercise in for the day...ha ha!
We did the scans and everything came back unchanged. The shunt was working fine. That was good and bad news. Good because her brain and shunt looked stable, bad because what does that mean for her pupils?
She did wake up for a few hours after the scans and we were able to do 1 (2 hour) trial off bipap.
Another rough night Thurs night. 5 plus desats.
Wednesday, April 12, 2017
Up a floor..closer to the door
They told us earlier today we would go to the floor at 3:00. Well 3:00 rolled around and there were still hospital politics in play. Aka the floor drs don't want to/can't wean her bipap.
It took another few hours, but we made it to the floor.
The room is tiny and cell reception is bad.
But it is a sign of improvement.
She has done 2 trials today of 2 hours each time and has done well. She got a little sleepy, but the nurse forgot to give her second dose of Ritalin. So hopefully that's why.
Music therapy
Music therapy came. Ellie loves it! Which means I love it. I cry every time they come because it is so good to see something Ellie participating in something that she loves so much. She smiles and is engaged. She just eats it up.
I need to find a local music therapy program for her. The rest of the kids have lessons, she could too!
I even caught a smile on camera.
Sounds good
Tues 4/11/17 ( yesterday)
About 1 Pm they told us we were going to the floor.
Earlier in the day they said they were getting in touch with her regular pulmonologist. I said can't we just use the on-call pulmonologist? They said maybe.
About 4:30 the room was ready but she hadn't had her breathing treatment that was due at 4:00. And they had actually missed her noon breathing treatment due to miscommunication. So she is supposed to get breathing treatments every 4 hours and we were now sitting at 8.5 hours.
I know from experience that once you move it takes hours upon hours to get anything done.
You have to explain everything to a new resident, then a new fellow, then a new Dr, then a new nurse. All orders have to be rewritten ( meds, breathing treatments, etc...). They do not use the same orders that they have been using in PICU. They can't do anything until new orders are written. Orders are all handwritten, there is no copy and paste.
Once orders are written they have to be scanned. Then given to pharmacy, Respiratory Therapy, formula, etc...
It literally take hours.
I knew it would be at least 2-3 more hours before a breathing treatment could get done. I said I wanted it done before we left PICU. They acted like that was unnecessary, but I insisted.
While doing her breathing treatment the in-car pulmonologist came by. He started off by saying "Why are you weaning her off bipap?" I said, "so we can go home." ( like duh?!?!!)
He said her blood gas had been terrible and he would never wean anyone with that bloodgas.
I tried explaining to him multiple times that the bloodgas was taken after she had been off bipap for several hours and was getting tired. He was not listening.
He said weaning her would not be his plan.
I said, "so are we still going to the floor?"
He said he didn't know, he would talk with the PICU Dr's.
The PICU fellow came by later and said we would stay in PICU at least overnight.
That was fine. Anything to avoid that pulmonologist.
I told the PICU Dr, " why don't we just go back to the plan of phone consults with her regular pulmonologist?"
They said there were hospital politics involved.
It sounds like we can potentially do that, but she can't come physically until Fri. And for some reason this is playing into the politics that I don't understand.
She did nor gave a great day yesterday. She was tired, I think we pushed her too hard. And she sounded junky, because she missed a breathing treatment.
It was just all around a bad day. Today will be better.
She slept through the night. No desats.
Wed 4/12/17... Day 9 (Today)
This morning, the nurse, Rt ( Respiratory Therapist) and Attending Dr. have all said she sounds good. ( her lungs sound good).
The attending PICU Dr asked me when I felt comfortable going home. In other words, how many hours off of bipap is my goal before going home. I said I wasn't sure. She was only using it an hour a day before coming in. But we are a long way from that. We don't have to be back to baseline ( an hour a day) but I'm not ready to take her yet.
She is still really sick if breathing on her own for 3 hours completely wears her out.
The attending today thinks the plan of 2 hours on and 2 hours off sounds like too much. He wants to do 3 trials of 2 hours each today. It is basically adding in a 3rd trial. She has been doing 2 and making it about 2 to 2.5 hours.
That sounds good.
The attending wants to try and get us to the floor today. I told him flat out that I did not want to work with the on-call pulmonologist. He said they are trying to work some things out.
I know people like pics, but I feel kind of silly posting them because I feel like every pic is exactly the same.
The pink stuff on her face is foam to protect her skin from the mask. We have been switching back and forth between 2 masks to change the pressure points. ( That is why there is pink foam on her gore head also, the other mask hits there).
Tuesday, April 11, 2017
A kinship
I belong to a club that comes with immediate love and compassion. It is a kinship that exists when words have not even been spoken.
I have learned what the gang symbols for this club are..a pink bracelet and yellow name tag and lanyard if your child is inpatient. And a white sticker with a name written in marker for surgery.
I feel comforted walking down the halls of my local children's hospital pushing a wheelchair and I see another family pushing a wheelchair. We smile at each other and we understand. We know we belong to the same club.
I see it when I glance in another patients room and I see a Mom or Dad looking tired and worried.
I hear it when I am in the cafeteria late at night and the only people there are parents. A loud beep comes over the intercom and the room goes absolutely silent. We know they will announce a "Code Blue". That someone's child has stopped breathing or heart has stopped. That Dr.s are running as we silently sit. Our own hearts have stopped beating and we don't dare breathe. We pray they won't say our child's room number. As someone else's room number is called you breathe a sigh of relief for yourself and inwardly mourn for the other family.
This is not a club that you want to join. But you would if you had to. So stop saying you couldn't do it, because guess what? You would.
Changing trials
The blood gas (checking to see if retaining CO2) from Mon night showed that yes she was retaining CO2. This is a plausible explanation for the sleepiness and probably means tge breathing was making her tired.
Tues morn she made it 2.5 hours on her trial off bipap, but then got sleepy.
So we made a new plan of 2 hours on bipap and 2 hours off bipap. To see how she does. This would be more like doing sprints, rather than a marathon.
We will be going to the floor sometime today. Probably not until tonight.
Going to the floor is good because it means closer to discharge, but it carries with it other challenges.
#1) nurse to patient ratio is higher...they are overworked and Ellie gets less attention
#2) in ICU the residents and Attending Dr. are about 50 steps away. They can be there within a few minutes. On the floor the Dr.s and residents can literally take hours to come answer a question. I'm really not exaggerating.
#3) in ICU the RT's are about 200 steps away. They can be there within a few minutes. They come for your treatments, but it takes them much longer ( like 20-30 minutes) to come if you need them for something else.
#4) in ICU the Dr.'s are allowed to make changes to bipap. On the floor the Dr.'s cannot make changes. Bipap changes must be ordered by her pulmonologist. I love her pulmonologist, but she does not work at PCH. So we will have to coordinate plans by phone. It will be a pain and will really slow down the recovery process.
#5) there are free slushies in ICU
In reality, I would rather stay in PICU.
Oh well. It will be fine. I just have to be more proactive on the floor and make sure I am on top of the nurses and Drs. And make sure I get all of my questions written down and answered while I have the appropriate people at hand.
Day 8
Tues Apr 11...Day 8
Yesterday during the day several people commented that her lungs sound better.
I do not listen to her lungs at home. It stresses me out. If I hear any crackles or wheezing I freak out and think she is getting really sick. Then I can't sleep and am stressed and snap at everyone. It is not pretty. So it is better for me to go by heartrate, sats and physical symptoms rather than listening to her all of the time. I have her school nurses report to me how her lungs sound. This is the balance that I have reached.
During both of her 4 hour trials yesterday she got tired. She maintained her sats, but I think she was worn out. When she got tired on the 2nd trial we did a blood gas to see if she was retaining CO2 (the stuff you are supposed to breathe out). If you retain CO2 it can make you sleepy. I have not gotten a clear answer on wheat that poke revealed. I will pin down the team today when they round.
Also after her 2nd trial the RT (Respiratory Therapist) said that her breathe sounds diminished. And he had previously taken care of her.
So I'm thinking we were just pushing her too hard, too fast.
She is still doing well, I just don't think she was ready for 4 hours straight.
I'm sure they will try again today.
We have a new resident in charge of us today...it is hard when someone hasn't seen how far she has improved. Hopefully the attending Dr. is the same. I will have to see. I don't like change. \
Sometimes it can be good to get a 2nd opinion and new ideas, but usually it involves a lot of repeating the same information you have just been telling the previous team for the last week. Grrrrrr...
For example, she comes in and says so I hear her trial went well yesterday. No, she got sleepy and had diminished breath sounds. Then she says OK, I think I'll call your Pulmonologist.
Seriously, leave the lady (her pulmonologist) alone. Ellie is fine. She just wasn't quite ready for 4 hours. It takes time to heal.
Happy thoughts...Happy Thoughts...Happy thoughts... trying not to be frustrated today. I'm sure it's me. Feeling frustrated with nurse, RT and resident. So obviously it is a personal problem (officially known as Grumpy Mom Syndrome). Probably just not enough fresh air and sunshine. And maybe not enough chocolate! Ha ha!
Ellie is improving a little each day.
I think I am just going a little stir crazy.
Today (and every Tuesday) they have a luncheon for inpatient parents of kids who belong to Rainbow Kids (in simple terms it means kids who will have a shortened lifespan). So hopefully that will help to talk with other parents and vent.
Last night Ellie had a really great night. No alarms, no desats. Go Ellie!
For anyone who I ramble on about my low carb diet (I mean WAY OF LIVING...not DIET...right?!?!?!?) to...I have been doing good while inpatient. I have had a few cheats. But my stomach is doing really well. Usually I am downing pepto and prevacid by the bottle because of stress and bad eating while inpatient. But my stomach has been the picture of perfection. So that is good.
Yesterday during the day several people commented that her lungs sound better.
I do not listen to her lungs at home. It stresses me out. If I hear any crackles or wheezing I freak out and think she is getting really sick. Then I can't sleep and am stressed and snap at everyone. It is not pretty. So it is better for me to go by heartrate, sats and physical symptoms rather than listening to her all of the time. I have her school nurses report to me how her lungs sound. This is the balance that I have reached.
During both of her 4 hour trials yesterday she got tired. She maintained her sats, but I think she was worn out. When she got tired on the 2nd trial we did a blood gas to see if she was retaining CO2 (the stuff you are supposed to breathe out). If you retain CO2 it can make you sleepy. I have not gotten a clear answer on wheat that poke revealed. I will pin down the team today when they round.
Also after her 2nd trial the RT (Respiratory Therapist) said that her breathe sounds diminished. And he had previously taken care of her.
So I'm thinking we were just pushing her too hard, too fast.
She is still doing well, I just don't think she was ready for 4 hours straight.
I'm sure they will try again today.
We have a new resident in charge of us today...it is hard when someone hasn't seen how far she has improved. Hopefully the attending Dr. is the same. I will have to see. I don't like change. \
Sometimes it can be good to get a 2nd opinion and new ideas, but usually it involves a lot of repeating the same information you have just been telling the previous team for the last week. Grrrrrr...
For example, she comes in and says so I hear her trial went well yesterday. No, she got sleepy and had diminished breath sounds. Then she says OK, I think I'll call your Pulmonologist.
Seriously, leave the lady (her pulmonologist) alone. Ellie is fine. She just wasn't quite ready for 4 hours. It takes time to heal.
Happy thoughts...Happy Thoughts...Happy thoughts... trying not to be frustrated today. I'm sure it's me. Feeling frustrated with nurse, RT and resident. So obviously it is a personal problem (officially known as Grumpy Mom Syndrome). Probably just not enough fresh air and sunshine. And maybe not enough chocolate! Ha ha!
Ellie is improving a little each day.
I think I am just going a little stir crazy.
Today (and every Tuesday) they have a luncheon for inpatient parents of kids who belong to Rainbow Kids (in simple terms it means kids who will have a shortened lifespan). So hopefully that will help to talk with other parents and vent.
Last night Ellie had a really great night. No alarms, no desats. Go Ellie!
For anyone who I ramble on about my low carb diet (I mean WAY OF LIVING...not DIET...right?!?!?!?) to...I have been doing good while inpatient. I have had a few cheats. But my stomach is doing really well. Usually I am downing pepto and prevacid by the bottle because of stress and bad eating while inpatient. But my stomach has been the picture of perfection. So that is good.
Monday, April 10, 2017
Conglomerate post
Sorry this post will be covering so many days at once. It has been hard to maintain her blog without a computer.
When I say desat or desatted (in this case) it means she obstructed her airway. Something physically got in the way of her being able to breathe (tongue, airway collapse, secretions/mucus plugs). When this is happening (and happens at home also) her sats (amount of oxygen in her blood) lately drop to anywhere from 60- 85%. 85% is not terribly bad (you wouldn't want to stay there for a long time)...but 60% is start freaking out bad. So some desats are worse than others.
Our cure lately has been tilt her head back, turn the o2 up and do a jaw thrust (pull her jaw forward).
Fri 4/7/17 Day 4
Her sodium was low so they did a renal panel (blood work to check kidneys). It came back fine and her sodium corrected itself so it is no longer a concern.
They gave her extra free water (meaning increased fluids by giving her some water) through her gtube on Fri and Sat. To help with a low fluid output.
Awake all day Fri.
She was up to full feeds on last Wed or Thur (Day 2 or 3) and has continued to do well with her regular nutrition that she gets at home (both quantity and recipe).
The tops of her arms were red and hot to the touch and she was uncomfortable. I remembered that they had used 2 warming lamps for several hours straight in the ED on Tues. So I drew the conclusion that she had gotten sunburned. I know this would be unusual because it was a few days later instead of that day or the next day. But we couldn't come up with another explanation. However the redness disappeared on it's own by that night (several hours later). So it was not a sunburn. It has not returned. We do not know what it was.
She maintained the same settings on bipap 16/8 (she started at 18/10 originally).
We were able to lower her oxygen to 30% and maintain her sats (oxygen in her blood).
Desatted twice during the night.
Sat 4/8/17 Day 5
Able to lower bipap settings to 14/7 which are her normal home settings. She was just using it non-stop which she normally does not do.
Oxygen remained at 30%.
Jason came and stayed the rest of this day and overnight. So I could attend my other daughters dance competition in Park City and teach Relief Society the next day.
She was awake the remainder of the day.
Desatted twice during the night.
Sun 4/9/17 Day 6
Awake all day.
This morning did a 1 hour trial off of bipap and only on nasal canula. She did great. No problems.
This evening she was supposed to do a 2 hour trial off bipap...but it ended up being 3 hours. She did great. No problems. She was smiling and talking and moving her arms (meaning she was happy and wanted more).
Sunday night was rough...5 desats. When I say rough, I mean for both Ellie and myself. Because I get up each time she desats to help bring her sats up. I am more familiar with exactly the best way to position her head to have the best airway etc.
Monday (TODAY) 4/10/17 Day 7
Awake this morning.
Started a 4 hour trial off bipap. And sat her up in her wheelchair (for 1.5 hours) for the first time since we came in last Tues.
She was EXTREMELY smiley off the bipap and sitting up in the wheelchair.
But she only made it 2 and a half hours on the trial. She started getting sleepy. It told me that she was worn out. Working too hard to breathe. Her sats were still good. But I didn't want to wear her out any more.
I asked for her Ritalin to be given a little early. This is a daily med that she gets at home also. She gets Ritalin (a stimulant) to wake her up in the morning and afternoon. They were able to give the Ritalin, but she still didn't wake up. So we put her back on bipap.
We will try another 4 hour trial tonight.
We have been doing breathing treatments q4 (every 4 hours around the clock). Vibrating vest and nebulized meds. At home she does duoneb (albuterol and iprotropium bromide) and 7% hypertonic (extra salty) saline twice a day. A few days in they swapped out the duoneb for straight albuterol followed by the saline because the duoneb can dry out secretions and they wanted them wet and loose to cough them up. She has been doing the albuterol q4 but the hypertonic saline cannot be given more than twice a day. Today we are switching back to duoneb which they will do q4.
If we get to 4 hours off the bipap, they will consider moving us to the floor.
It is more work for me on the floor because the nurse to patient ratio is higher. In PICU each nurse has 1 or 2 patients. On the floor each nurse has maybe 4 patients?!?!?!?
I discussed with the resident and the respiratory therapist if we want to stop the trial when she gets sleepy or push her farther as long as maintaining sats. We probably want to stop and then get a blood gas. To make sure she is not retaining Co2 (which can make you sleepy).
The resident also called her regular pulmonologist. They chatted and think things are improving. And we should follow up after discharged. I could have told you all of that. Ha ha! Oh well. It's fine!
The resident wanted to flush out a "sick" plan that maybe we could ramp things up at home before coming into the hospital. I already imcrease breathing treatments, increase suctioning, increase meds, increase oxygen, increase monitoring.
I do not think an additional plan is necessary. I wouldn't feel comfortable doing anything more than I do at home. I think the pulmonologist agreed because no plan was made. Just the plan to follow up with her after discharge.
I'm not sure what more they think I could do. Change her bipap settings higher?!?!?!? Use high flow o2?!?!?!? But I wouldn't have an xray or blood gases. I keep her at home until I am no longer comfortable and then bring her in. And typically she is sick enough to be admitted. Such as this time. She was admitted to ICU...they want a plan for me to take care of someone sick enough to be admitted to ICU? It doesn't make any sense. Good thing her pulmonologist knows our situation.
When I say desat or desatted (in this case) it means she obstructed her airway. Something physically got in the way of her being able to breathe (tongue, airway collapse, secretions/mucus plugs). When this is happening (and happens at home also) her sats (amount of oxygen in her blood) lately drop to anywhere from 60- 85%. 85% is not terribly bad (you wouldn't want to stay there for a long time)...but 60% is start freaking out bad. So some desats are worse than others.
Our cure lately has been tilt her head back, turn the o2 up and do a jaw thrust (pull her jaw forward).
Fri 4/7/17 Day 4
Her sodium was low so they did a renal panel (blood work to check kidneys). It came back fine and her sodium corrected itself so it is no longer a concern.
They gave her extra free water (meaning increased fluids by giving her some water) through her gtube on Fri and Sat. To help with a low fluid output.
Awake all day Fri.
She was up to full feeds on last Wed or Thur (Day 2 or 3) and has continued to do well with her regular nutrition that she gets at home (both quantity and recipe).
The tops of her arms were red and hot to the touch and she was uncomfortable. I remembered that they had used 2 warming lamps for several hours straight in the ED on Tues. So I drew the conclusion that she had gotten sunburned. I know this would be unusual because it was a few days later instead of that day or the next day. But we couldn't come up with another explanation. However the redness disappeared on it's own by that night (several hours later). So it was not a sunburn. It has not returned. We do not know what it was.
She maintained the same settings on bipap 16/8 (she started at 18/10 originally).
We were able to lower her oxygen to 30% and maintain her sats (oxygen in her blood).
Desatted twice during the night.
Sat 4/8/17 Day 5
Able to lower bipap settings to 14/7 which are her normal home settings. She was just using it non-stop which she normally does not do.
Oxygen remained at 30%.
Jason came and stayed the rest of this day and overnight. So I could attend my other daughters dance competition in Park City and teach Relief Society the next day.
She was awake the remainder of the day.
Desatted twice during the night.
Sun 4/9/17 Day 6
Awake all day.
This morning did a 1 hour trial off of bipap and only on nasal canula. She did great. No problems.
This evening she was supposed to do a 2 hour trial off bipap...but it ended up being 3 hours. She did great. No problems. She was smiling and talking and moving her arms (meaning she was happy and wanted more).
Sunday night was rough...5 desats. When I say rough, I mean for both Ellie and myself. Because I get up each time she desats to help bring her sats up. I am more familiar with exactly the best way to position her head to have the best airway etc.
Monday (TODAY) 4/10/17 Day 7
Awake this morning.
Started a 4 hour trial off bipap. And sat her up in her wheelchair (for 1.5 hours) for the first time since we came in last Tues.
She was EXTREMELY smiley off the bipap and sitting up in the wheelchair.
But she only made it 2 and a half hours on the trial. She started getting sleepy. It told me that she was worn out. Working too hard to breathe. Her sats were still good. But I didn't want to wear her out any more.
I asked for her Ritalin to be given a little early. This is a daily med that she gets at home also. She gets Ritalin (a stimulant) to wake her up in the morning and afternoon. They were able to give the Ritalin, but she still didn't wake up. So we put her back on bipap.
We will try another 4 hour trial tonight.
We have been doing breathing treatments q4 (every 4 hours around the clock). Vibrating vest and nebulized meds. At home she does duoneb (albuterol and iprotropium bromide) and 7% hypertonic (extra salty) saline twice a day. A few days in they swapped out the duoneb for straight albuterol followed by the saline because the duoneb can dry out secretions and they wanted them wet and loose to cough them up. She has been doing the albuterol q4 but the hypertonic saline cannot be given more than twice a day. Today we are switching back to duoneb which they will do q4.
If we get to 4 hours off the bipap, they will consider moving us to the floor.
It is more work for me on the floor because the nurse to patient ratio is higher. In PICU each nurse has 1 or 2 patients. On the floor each nurse has maybe 4 patients?!?!?!?
I discussed with the resident and the respiratory therapist if we want to stop the trial when she gets sleepy or push her farther as long as maintaining sats. We probably want to stop and then get a blood gas. To make sure she is not retaining Co2 (which can make you sleepy).
The resident also called her regular pulmonologist. They chatted and think things are improving. And we should follow up after discharged. I could have told you all of that. Ha ha! Oh well. It's fine!
The resident wanted to flush out a "sick" plan that maybe we could ramp things up at home before coming into the hospital. I already imcrease breathing treatments, increase suctioning, increase meds, increase oxygen, increase monitoring.
I do not think an additional plan is necessary. I wouldn't feel comfortable doing anything more than I do at home. I think the pulmonologist agreed because no plan was made. Just the plan to follow up with her after discharge.
I'm not sure what more they think I could do. Change her bipap settings higher?!?!?!? Use high flow o2?!?!?!? But I wouldn't have an xray or blood gases. I keep her at home until I am no longer comfortable and then bring her in. And typically she is sick enough to be admitted. Such as this time. She was admitted to ICU...they want a plan for me to take care of someone sick enough to be admitted to ICU? It doesn't make any sense. Good thing her pulmonologist knows our situation.
Friday, April 7, 2017
How to help
We have had several people offer help. We truly appreciate the offers.
Over the years Jason and I have come up with a system to deal with life while Ellie is inpatient.
We have to split responsibilities. Here is how it works...
I go with Ellie to the hospital and stay with her basically 24/7. I leave to eat/shower/go to the bathroom/maybe exercise. There have been times I have left and frankly things have happened while I am gone and/or I worry the whole time. It is hard leaving my non-verbal child that I can communicate with, but it is difficult/impossible to train a nurse in 5 minutes how to communicate with her.
Jason stays home. He tries to go to work as much as possible. Which he is able to do mostly as long as we have childcare.
I am in charge of all things at the hospital and Jason is in charge of all things at home.
So Jason takes care of the kids, arranging childcare, the house, meals, homework, lessons, extracurricular activities, etc...
I think I have the easier job...don't you? He is amazing!
Once Ellie is discharged from the hospital is when the real work begins (for me). If you think about people who have been in the hospital you may realize that they get sent home before they are completely better. There are still treatments/therapies that need to be done as well as additional monitoring.
We are never back to baseline when we go home. I usually have to watch her/monitor vitals more vigilantly. More suction. More breathing treatments. More wound care. More of everything on top of all that I regularly do for Ellie. This usually takes a week or 2 until we can get back to normal.
This is all in addition to now having the responsibilities of the house and kids back on my plate. I am not trying to get sympathy, just let you know how it is.
While she is inpatient...contact Jason and tell him which days you are available to watch the kids. Especially Sabrina while the kids are at school. We have had both sets of grandparents available to help this week (THANK YOU GRANDPARENTS!!!!) because of spring break. But next week everyone goes back to school and we will still need help.
Ask Jason if you can come in and clean the house. Yes, I will probably be embarrassed (I am not the greatest housekeeper)...but I will not look a gift horse in the mouth. It would be appreciated.
Ask Jason if you can come pick up the laundry and take it home and wash, dry and fold it for him and the kids.
If you wanted to go above and beyond, I really wanted to get my garden rototilled this week during spring break and my front flower bed weeded. (Water the day before to make it easier and more effective...advice for both situations.). But that hasn't happened. So if you are looking for something to do to help. This is an idea for you.
As far as dinners go... A lot of the time Jason and the kids either eat with his parents or my parents if the kids have been staying there. Or they are busy at night coming down to the hospital to visit.
Dinners are MUCH MORE HELPFUL once she gets home. Remember that 1 or 2 week recovery period at home where Ellie needs a lot more help. This is where dinners are really really really really really appreciated. I think people often feel like once you are home then you are good to go. This is not the case. This time period is just as hard if not harder than being in the hospital.
Please offer specific help...do not say "call me if you need anything". We have no idea what that means and will never call you. It feels like an empty offer.
Call/text or FB msg what you are specifically able to do. Such as...I can watch Sabrina Mon or Thursday this week. I can bring dinner Fri or Saturday this week. I only work Wed and Thurs and can watch Sabrina any other day. Can I come clean your house on Wed between 10 and 11 AM? Can I come get your laundry on Thurs night and bring it back Fri Morning. Things like that. Those are the type of offers that are helpful.
Over the years Jason and I have come up with a system to deal with life while Ellie is inpatient.
We have to split responsibilities. Here is how it works...
I go with Ellie to the hospital and stay with her basically 24/7. I leave to eat/shower/go to the bathroom/maybe exercise. There have been times I have left and frankly things have happened while I am gone and/or I worry the whole time. It is hard leaving my non-verbal child that I can communicate with, but it is difficult/impossible to train a nurse in 5 minutes how to communicate with her.
Jason stays home. He tries to go to work as much as possible. Which he is able to do mostly as long as we have childcare.
I am in charge of all things at the hospital and Jason is in charge of all things at home.
So Jason takes care of the kids, arranging childcare, the house, meals, homework, lessons, extracurricular activities, etc...
I think I have the easier job...don't you? He is amazing!
Once Ellie is discharged from the hospital is when the real work begins (for me). If you think about people who have been in the hospital you may realize that they get sent home before they are completely better. There are still treatments/therapies that need to be done as well as additional monitoring.
We are never back to baseline when we go home. I usually have to watch her/monitor vitals more vigilantly. More suction. More breathing treatments. More wound care. More of everything on top of all that I regularly do for Ellie. This usually takes a week or 2 until we can get back to normal.
This is all in addition to now having the responsibilities of the house and kids back on my plate. I am not trying to get sympathy, just let you know how it is.
So that brings us to...how can you help?
While she is inpatient...contact Jason and tell him which days you are available to watch the kids. Especially Sabrina while the kids are at school. We have had both sets of grandparents available to help this week (THANK YOU GRANDPARENTS!!!!) because of spring break. But next week everyone goes back to school and we will still need help.
Ask Jason if you can come in and clean the house. Yes, I will probably be embarrassed (I am not the greatest housekeeper)...but I will not look a gift horse in the mouth. It would be appreciated.
Ask Jason if you can come pick up the laundry and take it home and wash, dry and fold it for him and the kids.
If you wanted to go above and beyond, I really wanted to get my garden rototilled this week during spring break and my front flower bed weeded. (Water the day before to make it easier and more effective...advice for both situations.). But that hasn't happened. So if you are looking for something to do to help. This is an idea for you.
As far as dinners go... A lot of the time Jason and the kids either eat with his parents or my parents if the kids have been staying there. Or they are busy at night coming down to the hospital to visit.
Dinners are MUCH MORE HELPFUL once she gets home. Remember that 1 or 2 week recovery period at home where Ellie needs a lot more help. This is where dinners are really really really really really appreciated. I think people often feel like once you are home then you are good to go. This is not the case. This time period is just as hard if not harder than being in the hospital.
Advice for helping in general
If we tell you no, please check back in a day or 2.Please offer specific help...do not say "call me if you need anything". We have no idea what that means and will never call you. It feels like an empty offer.
Call/text or FB msg what you are specifically able to do. Such as...I can watch Sabrina Mon or Thursday this week. I can bring dinner Fri or Saturday this week. I only work Wed and Thurs and can watch Sabrina any other day. Can I come clean your house on Wed between 10 and 11 AM? Can I come get your laundry on Thurs night and bring it back Fri Morning. Things like that. Those are the type of offers that are helpful.
Day 3 and Day 4
Sorry I didn't update yesterday. My laptop has been freezing every 10 seconds and I haven't been able to figure out how to update on my phone. It has been frustrating, so I didn't want to deal with it. So this morning I left Ellie for a few minutes to go to the Ronald McDonald Family room.
This is such a wonderful service for families. It is different from the Ronald McDonald House. (Same Organization). The Ronald McDonald House is a LARGE house not at the hospital. They provide bedrooms for families to stay at while their child is at the hospital. They have a large stocked kitchen that families can prepare meals for themselves. They have a shuttle that goes back and forth to the hospital several times per day.
The Ronald McDonald Family Room is in the hospital. It provides several bedrooms that a parent could reserve to stay at overnight while their child is inpatient. For example...you are sick of sleeping in the recliner in your child's room and would like one night of sleep in a real bed. You may also reserve a room during the day for a nap.
There is a really nice large kitchen stocked with pot/pans/stove/oven/dishes/microwave/fridge/freezer/utencils etc. The fridge, freezer and pantry are stocked with food that is free for parent to eat and or prepare them selves a meal.
There is a TV area with couches. A library with books you may borrow. A craft area. Laundry facilities to do some wash. Nice private shower facilities (much nicer than the ones in the hospital). And computers for parents to use (which is where I am at now).
There is also a parent resource hospital employee here. She helps parents with whatever they need. Recreation, hotels, restaurants, support groups, etc... If she doesn't know, she will find it for you. Shout out to Cindy!
The very best thing about the Ronald McDonald Family Room are the meals that people/businesses/organizations provide. People who want to help call in and sign up for a day that they agree to come cook and serve a meal to the families staying in the hospital. You prepare the meal for 60 people. It is usually at 6 PM. You supply all the food and labor. It is soooooo nice. Please consider signing up. Once in a while there are breakfasts or lunches...but it is typically dinner. If you want to volunteer call PCH 1-801-662-1000 and ask to be transferred to the Ronald McDonald Family Room. (I'm sure they have a direct phone number...but it is easier for me to use one phone number for everything). They are usually booked out a few months.
Wed night she desatted once or twice. This is where she obstructs her airway. We have recently found that if you do a jaw thrust (push her jaw forward) like they do when doing mouth to mouth it helps almost immediately. This desatting and obstructing is something we have struggled with multiple times per week and sometimes multiple times per night for years now. This new jaw thrusting has been great. It has been really effective.
So Wed night she desatted to the high 70's and we brought her sats up with jaw thrusting and cranking oxygen up to 100%. Previous to the desat she had been at 45% O2. The resident was there when the desat happened and he wanted to bump her o2 back up to 60% after. I tried explaining that she was just obstructing and that we didn't need to bump it up after the fact. Bump it up during the desat for sure, but not after. We had words. ALMOST nice words. I was trying to be nice...but just couldn't quite get there. He wanted to take it conservatively. I consented although I disagreed. It's fine. It is now slightly awkward when I see him.
It is hard because they tell you to "speak up"...literally those are the words they use. And yet when you do, it becomes awkward.
So we spent yesterday (Thurs...day 3) slowly lowering her o2 back to where it had been on day 2. When the attending came around without the resident I spoke with her about my concerns and she was fine with it and said she would pass the info on to the resident.
The rest of Wed was uneventful. She was awake all day. We watched a bunch of movies. She did not care for the new Tarzan movie. She was doing fairly well. She is not in pain. She is still needing bipap to help her breathe. But thankfully no intubation or sedation.
Thurs afternoon they moved us to a different room. I am bummed about it. We were in a HUGE room with a private bathroom. AWESOME!!!! They closed down that wing because they had less patients.
The room we got moved to is in the new part of the ICU which is nice and we now have windows (which the HUGE room had no windows) so that is nice too. But now we have neighbors and no private bathroom. Boo! It is still a pretty big room. (they all are in the new section). It' is fine. We are in lucky bed 13!
The family came and visited yesterday (Thurs). The kids were happy to see Mom and Ellie. They all got a slushie (one benefit is PICU is free slushies)!
Thurs day we got down to 30% o2 for a few hours but then she couldn't quite maintain it. So we had to go back to 40% o2. That's OK. She's just not quite strong enough yet. She will get there.
After going back to the 40% o2 we bumped down her bipap settings (this is her first bump down since being admitted). So this is huge. It was a tiny step down...but tiny steps are what are going to get us home.
Thurs at midnight she had another desat. More jaw thrusting. But they did not bump up o2 after. So yea! Desats are normal for her it does not mean her virus is progressing.
She slept through the night.
She has been coughing up a bunch of junk (this is good). We changed up her nebulized treatments a bit to try and help her thin out and cough stuff up.
Fri (day 4) she has been awake and doing well. She has been able to tolerate that small step down in the bipap settings and the 40% o2. I am assuming they will try to step down again today. We'll see if she's ready for it.
It is mostly a waiting game (with lots of movie watching). Her sister (Millie) is jealous she gets to watch movies all day.
She is headed in the right direction. Hopefully we can avoid catching something else while here.
Thank you all for your love, prayers and concern. Keep it up!
(Sorry for the lack of pics...technology difficulties)
This is such a wonderful service for families. It is different from the Ronald McDonald House. (Same Organization). The Ronald McDonald House is a LARGE house not at the hospital. They provide bedrooms for families to stay at while their child is at the hospital. They have a large stocked kitchen that families can prepare meals for themselves. They have a shuttle that goes back and forth to the hospital several times per day.
The Ronald McDonald Family Room is in the hospital. It provides several bedrooms that a parent could reserve to stay at overnight while their child is inpatient. For example...you are sick of sleeping in the recliner in your child's room and would like one night of sleep in a real bed. You may also reserve a room during the day for a nap.
There is a really nice large kitchen stocked with pot/pans/stove/oven/dishes/microwave/fridge/freezer/utencils etc. The fridge, freezer and pantry are stocked with food that is free for parent to eat and or prepare them selves a meal.
There is a TV area with couches. A library with books you may borrow. A craft area. Laundry facilities to do some wash. Nice private shower facilities (much nicer than the ones in the hospital). And computers for parents to use (which is where I am at now).
There is also a parent resource hospital employee here. She helps parents with whatever they need. Recreation, hotels, restaurants, support groups, etc... If she doesn't know, she will find it for you. Shout out to Cindy!
The very best thing about the Ronald McDonald Family Room are the meals that people/businesses/organizations provide. People who want to help call in and sign up for a day that they agree to come cook and serve a meal to the families staying in the hospital. You prepare the meal for 60 people. It is usually at 6 PM. You supply all the food and labor. It is soooooo nice. Please consider signing up. Once in a while there are breakfasts or lunches...but it is typically dinner. If you want to volunteer call PCH 1-801-662-1000 and ask to be transferred to the Ronald McDonald Family Room. (I'm sure they have a direct phone number...but it is easier for me to use one phone number for everything). They are usually booked out a few months.
Wed night she desatted once or twice. This is where she obstructs her airway. We have recently found that if you do a jaw thrust (push her jaw forward) like they do when doing mouth to mouth it helps almost immediately. This desatting and obstructing is something we have struggled with multiple times per week and sometimes multiple times per night for years now. This new jaw thrusting has been great. It has been really effective.
So Wed night she desatted to the high 70's and we brought her sats up with jaw thrusting and cranking oxygen up to 100%. Previous to the desat she had been at 45% O2. The resident was there when the desat happened and he wanted to bump her o2 back up to 60% after. I tried explaining that she was just obstructing and that we didn't need to bump it up after the fact. Bump it up during the desat for sure, but not after. We had words. ALMOST nice words. I was trying to be nice...but just couldn't quite get there. He wanted to take it conservatively. I consented although I disagreed. It's fine. It is now slightly awkward when I see him.
It is hard because they tell you to "speak up"...literally those are the words they use. And yet when you do, it becomes awkward.
So we spent yesterday (Thurs...day 3) slowly lowering her o2 back to where it had been on day 2. When the attending came around without the resident I spoke with her about my concerns and she was fine with it and said she would pass the info on to the resident.
The rest of Wed was uneventful. She was awake all day. We watched a bunch of movies. She did not care for the new Tarzan movie. She was doing fairly well. She is not in pain. She is still needing bipap to help her breathe. But thankfully no intubation or sedation.
Thurs afternoon they moved us to a different room. I am bummed about it. We were in a HUGE room with a private bathroom. AWESOME!!!! They closed down that wing because they had less patients.
The room we got moved to is in the new part of the ICU which is nice and we now have windows (which the HUGE room had no windows) so that is nice too. But now we have neighbors and no private bathroom. Boo! It is still a pretty big room. (they all are in the new section). It' is fine. We are in lucky bed 13!
The family came and visited yesterday (Thurs). The kids were happy to see Mom and Ellie. They all got a slushie (one benefit is PICU is free slushies)!
Thurs day we got down to 30% o2 for a few hours but then she couldn't quite maintain it. So we had to go back to 40% o2. That's OK. She's just not quite strong enough yet. She will get there.
After going back to the 40% o2 we bumped down her bipap settings (this is her first bump down since being admitted). So this is huge. It was a tiny step down...but tiny steps are what are going to get us home.
Thurs at midnight she had another desat. More jaw thrusting. But they did not bump up o2 after. So yea! Desats are normal for her it does not mean her virus is progressing.
She slept through the night.
She has been coughing up a bunch of junk (this is good). We changed up her nebulized treatments a bit to try and help her thin out and cough stuff up.
Fri (day 4) she has been awake and doing well. She has been able to tolerate that small step down in the bipap settings and the 40% o2. I am assuming they will try to step down again today. We'll see if she's ready for it.
It is mostly a waiting game (with lots of movie watching). Her sister (Millie) is jealous she gets to watch movies all day.
She is headed in the right direction. Hopefully we can avoid catching something else while here.
Thank you all for your love, prayers and concern. Keep it up!
(Sorry for the lack of pics...technology difficulties)
Wednesday, April 5, 2017
Clarification
To summarize the day so far ...it is Wed 4/5/2017 at 1 PM...Day 2
She had a good night. Still needing bipap. Left lung still collapsed. We were able to lower o2 a bit. But mostly this is just going to take some time to get healthy again.
Additional Details
We had an uneventful night...always good!
Events are usually bad.
She is hanging in there. We have not seen her needs increase. Meaning she is either the same or improved. They have not been able to lower her bipap settings. They haven't tried. She is not ready. She is pretty sick. She is at 18/10 on the bipap. With a backup rate of 22 Breaths per minute. She is breathing over the bipap (so she is still breathing on her own...she has not given up and allowed the bipap to take over). Her normal settings are 14/7. So her current settings are higher than her home settings.
She still has some room that the bipap could go higher before we would need to intubate and go to a ventilator. But so far we have not needed to increase. It has been the same settings for 24 hours.
Her oxygen was at 100% bleed in yesterday and has been lowered to 45% today. And she is maintaining oxygen sats (oxygen in her blood) at about 93%. This is good that we have been able to lower it.
When they run oxygen through a bipap or ventilator they measure it by % instead of liters. Room air (the air around us that we breathe) is 21% oxygen. When they say 100% they are giving pure 100% oxygen. So 45% is a mixture that includes only 45% oxygen...but that is not down to the 21% which is what you and I breathe.
Her electrolytes are low. This is to be expected when sick. They are giving a little extra IV fluids. But I told them she gets puffy really easily, so they are keeping it low. The puffy means that her cells would be holding onto the fluids instead of using them right away.
She has been awake yesterday and today. Good signs. She is not completely wiped out and they have not had to sedate her for any reason.
She seemed to sleep well through the night.
We are really playing the hospital waiting game. It is not a fun game. It is a game all about supporting medical needs as needed, monitoring for changes, allowing the body time to heal, allowing the medicine time to work, allowing the virus to run it's course.
They have this new kind of recliner that lays pretty flat into a "bed" in her ICU room. I was a little worried because I haven't slept on this kind before. Either I was really tired or the design was not too bad. Maybe both.
In other news this hospital stay is going to be a struggle for me. I recently started eating low-carb. I thought...that will be fine at the hospital....they have lots of healthy choices. Well last night for dinner the main dish was a chicken or fish (which would be fine) but it had a sugary glaze all over it. So I thought I'll get a grilled chicken from the grill without the bun. But no, their grilled chicken is breaded. So I ended up getting a chef salad (perfect) with an extra egg on top. That is a good choice...but I hopefully won't have to eat it for every meal while I'm here. Breakfast was good I had eggs and sausage and bacon. I am committed to stick with it and not stress it. So far so good.
The funny thing is...IHC facilities recently made a rule that they weren't going to carry candy bars or soda in their cafeterias or vending machines in an effort to be more healthy. It is a joke though. Their vending machines still have just as much sugar and empty calories as before (such as a rice crispie treat). It is one thing to start carrying healthy food in your vending machines as an alternative option. It is another matter entirely to replace it with food that is just as bad for you, but not as yummy. If people want to eat healthy they will. If they want a snickers when their child is in the hospital...give the parent a snickers for heaven sakes. Anyway, rant over.
Several points of clarification:
I said she met shock protocol when she arrived at the Emergency Department. This means she met their definition of being in Septic Shock. You meet this protocol if multiple vitals are outside of normal. So her heartrate was high, breathing low, oxygen needs high, temperature low, heartrate high, blood pressure low.
As they balanced out these various vitals she is no longer considered in septic shock.
On chest xray white is bad. Air shows up black. So you want your lungs to be black on xray because that is air. Her left lung is almost completely white. The small airways are collapsed. This is called adelectesis.
They repeated the chest xray this morning and her left lung is still black. This could either be an effect of the virus, or it could be mucus plugs blocking the air from getting in. They are worried that if it is plugs that we are pumping a bunch of air into her but it is all going into the right lung with none going into the left. They may add another nebulized med to try and break up lung secretions (mucus plugs). But it might just take time for that lung to open back up.
In the meantime the bipap is starting to make her face red from where it pushes on her skin. Boo! I am going to ask for a different brand of mask (a 2nd mask) to swap out, so we are pushing on different areas of her face to prevent blisters and sores.
I am hoping that because they are NOT seeing pockets of fluid in her lungs (which is what you would probably see if it was the home bipap pushing secretions down into lungs) that perhaps this illness is just a coincidence and not a result of restarting bipap recently.
This is what you have to do when going through a trial...find hope.
So I hope that this will turn out to be true. But more importantly I know that all things will turn out according to God's will. Whether or not we end up with a trach, or when it comes time for Ellie to graduate from this life (neither one is on the table right now) (Sorry if I freaked you out) I know that I can find peace, comfort, guidance and love from my Heavenly Father who loves me.
I also recently gave a lesson at church on trials. The main point that I wanted to get across was you only have 1 choice that you need to make in a trial. It is during times of trial that we choose to turn to God or away from God. This is the only long-lasting choice that you must make. Which will it be?
She had a good night. Still needing bipap. Left lung still collapsed. We were able to lower o2 a bit. But mostly this is just going to take some time to get healthy again.
Additional Details
We had an uneventful night...always good!
Events are usually bad.
She is hanging in there. We have not seen her needs increase. Meaning she is either the same or improved. They have not been able to lower her bipap settings. They haven't tried. She is not ready. She is pretty sick. She is at 18/10 on the bipap. With a backup rate of 22 Breaths per minute. She is breathing over the bipap (so she is still breathing on her own...she has not given up and allowed the bipap to take over). Her normal settings are 14/7. So her current settings are higher than her home settings.
She still has some room that the bipap could go higher before we would need to intubate and go to a ventilator. But so far we have not needed to increase. It has been the same settings for 24 hours.
Her oxygen was at 100% bleed in yesterday and has been lowered to 45% today. And she is maintaining oxygen sats (oxygen in her blood) at about 93%. This is good that we have been able to lower it.
When they run oxygen through a bipap or ventilator they measure it by % instead of liters. Room air (the air around us that we breathe) is 21% oxygen. When they say 100% they are giving pure 100% oxygen. So 45% is a mixture that includes only 45% oxygen...but that is not down to the 21% which is what you and I breathe.
Her electrolytes are low. This is to be expected when sick. They are giving a little extra IV fluids. But I told them she gets puffy really easily, so they are keeping it low. The puffy means that her cells would be holding onto the fluids instead of using them right away.
She has been awake yesterday and today. Good signs. She is not completely wiped out and they have not had to sedate her for any reason.
She seemed to sleep well through the night.
We are really playing the hospital waiting game. It is not a fun game. It is a game all about supporting medical needs as needed, monitoring for changes, allowing the body time to heal, allowing the medicine time to work, allowing the virus to run it's course.
They have this new kind of recliner that lays pretty flat into a "bed" in her ICU room. I was a little worried because I haven't slept on this kind before. Either I was really tired or the design was not too bad. Maybe both.
In other news this hospital stay is going to be a struggle for me. I recently started eating low-carb. I thought...that will be fine at the hospital....they have lots of healthy choices. Well last night for dinner the main dish was a chicken or fish (which would be fine) but it had a sugary glaze all over it. So I thought I'll get a grilled chicken from the grill without the bun. But no, their grilled chicken is breaded. So I ended up getting a chef salad (perfect) with an extra egg on top. That is a good choice...but I hopefully won't have to eat it for every meal while I'm here. Breakfast was good I had eggs and sausage and bacon. I am committed to stick with it and not stress it. So far so good.
The funny thing is...IHC facilities recently made a rule that they weren't going to carry candy bars or soda in their cafeterias or vending machines in an effort to be more healthy. It is a joke though. Their vending machines still have just as much sugar and empty calories as before (such as a rice crispie treat). It is one thing to start carrying healthy food in your vending machines as an alternative option. It is another matter entirely to replace it with food that is just as bad for you, but not as yummy. If people want to eat healthy they will. If they want a snickers when their child is in the hospital...give the parent a snickers for heaven sakes. Anyway, rant over.
Several points of clarification:
I said she met shock protocol when she arrived at the Emergency Department. This means she met their definition of being in Septic Shock. You meet this protocol if multiple vitals are outside of normal. So her heartrate was high, breathing low, oxygen needs high, temperature low, heartrate high, blood pressure low.
As they balanced out these various vitals she is no longer considered in septic shock.
On chest xray white is bad. Air shows up black. So you want your lungs to be black on xray because that is air. Her left lung is almost completely white. The small airways are collapsed. This is called adelectesis.
They repeated the chest xray this morning and her left lung is still black. This could either be an effect of the virus, or it could be mucus plugs blocking the air from getting in. They are worried that if it is plugs that we are pumping a bunch of air into her but it is all going into the right lung with none going into the left. They may add another nebulized med to try and break up lung secretions (mucus plugs). But it might just take time for that lung to open back up.
In the meantime the bipap is starting to make her face red from where it pushes on her skin. Boo! I am going to ask for a different brand of mask (a 2nd mask) to swap out, so we are pushing on different areas of her face to prevent blisters and sores.
I am hoping that because they are NOT seeing pockets of fluid in her lungs (which is what you would probably see if it was the home bipap pushing secretions down into lungs) that perhaps this illness is just a coincidence and not a result of restarting bipap recently.
This is what you have to do when going through a trial...find hope.
So I hope that this will turn out to be true. But more importantly I know that all things will turn out according to God's will. Whether or not we end up with a trach, or when it comes time for Ellie to graduate from this life (neither one is on the table right now) (Sorry if I freaked you out) I know that I can find peace, comfort, guidance and love from my Heavenly Father who loves me.
I also recently gave a lesson at church on trials. The main point that I wanted to get across was you only have 1 choice that you need to make in a trial. It is during times of trial that we choose to turn to God or away from God. This is the only long-lasting choice that you must make. Which will it be?
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