Having a child with a trach and on a ventilator/vent is SOOOOOOOOO hard. It has been the hardest thing we have had to go through with Ellie.
I am SOOOOOO grateful that that stage of our life is over. I have so much compassion for those parents who will always have a trach and a vent.
A trach is hard also. But a vent is all-consuming.
Getting Ellie off of the vent was fantastic. I remember when I called them to come pick up the machine I was really scared. What if Ellie stopped breathing? But it felt SO good at the same time. I felt 100 pounds lighter at least.
Getting rid of the trach was also scary. Once again, what if she stopped breathing? It was such a big step. But it is so nice having it gone.
You have to remember that with a trach or a vent it requires 24 hour supervision. If the trach gets plugged or comes out that person has no airway.
You can't drop your child off at any old babysitter, it has to be someone who knows how to suction, replace a trach and knows CPR. If you have a vent, then you have to know all about the the vent how to troubleshoot, operate, who to call if it malfunctions, what to do if the power goes out, etc...
The entire time that we had the trach we had to have night nurses come in from 10 PM-7 AM so that J and I could get some sleep. If the nurse didn't show up, we had to take turns sitting by Ellie watching her.
The nurses feel like a complete invasion of your home. You feel like you have to always have it clean. You can't get up in your underwear in the middle of the night. You can't have a late night argument and not be overheard, etc...
However, you HAVE to have them. They were so good and kind. And we could not possibly have survived without them.
Sunday, March 22, 2009
Trach update
Remember she was on a ventilator (breathing machine) and had a tracheostomy/trach (hole in neck into windpipe) since Jan of 2003 due to airborne infant botulism.
It was a lot of work to wean her off of the ventilator. You have to do it slowly to allow your lungs to get strong enough again. We could take her off for a couple of minutes a few times a day. And we slowly increased the time she would be off of it. I don't really remember when she was completely off of the ventilator, I would guess about Oct or Nov 2003.
But she still had the trach. Then the next step was to re-train her to breathe through her nose and mouth. So they have a speaking valve. This is a one way valve that you place over the trach. It allows air to go out, but not in. So she would have to breathe in through her nose/mouth but she could breathe out through the trach. That takes some major coordination. Not to mention that you have this tube in your throat that you have to breathe around. We had to do the same thing as weaning her off of the vent. A few minutes of the speaking valve a few times a day and greadually increasing the amount of time.
Next came capping the trach. The cap would force her to breathe in AND out through her nose/mouth. Once again with the weaning process.
So, the next surgeries were Mar and Aug of 2004.
In March they went in and cut out some granulation tissue from her trach stoma (hole). Granulation tissue is just excess tissue from your body trying to heal itself.
Then in August they pulled out her trach. They do it in the hospital so that if she had problems breathing that they could help her. It was an overnight stay in intensive care. SHe did fine, so she came home.
Now you know of people who didn't wear earrings for a long time and their holes close up. Well it is the same for trachs. Except that the vast majority close up on their own.
So they didn't put in stitches in or anything, they just plan on it closing up by itself.
It was a lot of work to wean her off of the ventilator. You have to do it slowly to allow your lungs to get strong enough again. We could take her off for a couple of minutes a few times a day. And we slowly increased the time she would be off of it. I don't really remember when she was completely off of the ventilator, I would guess about Oct or Nov 2003.
But she still had the trach. Then the next step was to re-train her to breathe through her nose and mouth. So they have a speaking valve. This is a one way valve that you place over the trach. It allows air to go out, but not in. So she would have to breathe in through her nose/mouth but she could breathe out through the trach. That takes some major coordination. Not to mention that you have this tube in your throat that you have to breathe around. We had to do the same thing as weaning her off of the vent. A few minutes of the speaking valve a few times a day and greadually increasing the amount of time.
Next came capping the trach. The cap would force her to breathe in AND out through her nose/mouth. Once again with the weaning process.
So, the next surgeries were Mar and Aug of 2004.
In March they went in and cut out some granulation tissue from her trach stoma (hole). Granulation tissue is just excess tissue from your body trying to heal itself.
Then in August they pulled out her trach. They do it in the hospital so that if she had problems breathing that they could help her. It was an overnight stay in intensive care. SHe did fine, so she came home.
Now you know of people who didn't wear earrings for a long time and their holes close up. Well it is the same for trachs. Except that the vast majority close up on their own.
So they didn't put in stitches in or anything, they just plan on it closing up by itself.
What is hydrocephalus?
I thought I had explained this in an earlier post, but as I scanned back through I couldn't see it.
Everyone has pockets of fluid in their brain, if you didn't you would knock yourself out with the slightest bump on your noggin'.
If you have excess fluid, then you have a condition called hydrocephalus. It used to be called "water on the brain".
The reason's for hydrocephalus can be either that your brain produces too much fluid or that it can't drain it fast enough. Think of a sink with the faucet on. The tap can be up too high and the drain can't drain it, or the drain might be small or plugged and can't drain it. Either way, you get a build-up of fluid.
Now, sometimes when a child has hydrocephalus the brain and skull just expand, allowing for the pockets of fluid to expand also. In this case their is usually no brain damage or pressure to the brain. If the brain and skull don't expand, then the fluid has a limited area. It is like a water balloon. when you just have a little water in the balloon, the edges are floppy. But once you fill the balloon up and it is ready to pop, the edges are very smooth. So on the brain scans, if the edges of the fluid pockets are smooth, then there is a lot of pressure.
When there is a lot of pressure, then they place a shunt. (which I described a few posts ago).
Some of the signs of pressure are irritability, headaches, blurred vision, sleepiness.
Everyone has pockets of fluid in their brain, if you didn't you would knock yourself out with the slightest bump on your noggin'.
If you have excess fluid, then you have a condition called hydrocephalus. It used to be called "water on the brain".
The reason's for hydrocephalus can be either that your brain produces too much fluid or that it can't drain it fast enough. Think of a sink with the faucet on. The tap can be up too high and the drain can't drain it, or the drain might be small or plugged and can't drain it. Either way, you get a build-up of fluid.
Now, sometimes when a child has hydrocephalus the brain and skull just expand, allowing for the pockets of fluid to expand also. In this case their is usually no brain damage or pressure to the brain. If the brain and skull don't expand, then the fluid has a limited area. It is like a water balloon. when you just have a little water in the balloon, the edges are floppy. But once you fill the balloon up and it is ready to pop, the edges are very smooth. So on the brain scans, if the edges of the fluid pockets are smooth, then there is a lot of pressure.
When there is a lot of pressure, then they place a shunt. (which I described a few posts ago).
Some of the signs of pressure are irritability, headaches, blurred vision, sleepiness.
Thursday, March 12, 2009
Shunts are touchy
Shunts are very touchy things. There are people with shunts who have 30 or more revisions in a year. The Dr.'s say that if you can make it past the 1st year with no revisions, then you will probably make it several years.
Her first "real" surgery
In April 2003, when she was 10 months old, Ellie had her first real surgery. Her regular neurosurgery check-up brain scans showed that she now had pressure from the hydrocephalus. The Dr. we were seeing was Dr. Kestle, I asked for a second opinion and saw Dr. Brockmeyer. They both agreed that she needed the surgery. So we went ahead. They had to shave a small portion of her hair.
They suggested that we do a programmable shunt. (You can program with radio waves how much fluid the shunt will drain). We chose to do a traditional shunt (not programmable) sheerly for cosmetic reasons. The programmable shunts have a lot higher profile. It really was not that noticable.
They drill through the skull and brain into the fluid cavity. They put a one-way valve in (so fluid can only come out, not in). It releases fluid as pressure increases. So it doesn't continually drain, it is based on how much pressure there is. Then connected to the valve is tubing that runs under her skin, down her neck and chest and drains into the abdominal cavity. It does not go into the stomach, just into the area around her stomach. Then your body just absorbs the extra fluid.
After the surgery she just slept ans slept. The hospital was a little worried because that can be a sign of pressure in the brain. But they decided to discharge her anyway. As soon as we sent outside and got in the car she woke up and smiled.
She is so much more aware and a lot smarter than we think she is. She just didn't want to be in the hospital and "sleeping" was her way of communicating "I don't want to be here".
They suggested that we do a programmable shunt. (You can program with radio waves how much fluid the shunt will drain). We chose to do a traditional shunt (not programmable) sheerly for cosmetic reasons. The programmable shunts have a lot higher profile. It really was not that noticable.
They drill through the skull and brain into the fluid cavity. They put a one-way valve in (so fluid can only come out, not in). It releases fluid as pressure increases. So it doesn't continually drain, it is based on how much pressure there is. Then connected to the valve is tubing that runs under her skin, down her neck and chest and drains into the abdominal cavity. It does not go into the stomach, just into the area around her stomach. Then your body just absorbs the extra fluid.
After the surgery she just slept ans slept. The hospital was a little worried because that can be a sign of pressure in the brain. But they decided to discharge her anyway. As soon as we sent outside and got in the car she woke up and smiled.
She is so much more aware and a lot smarter than we think she is. She just didn't want to be in the hospital and "sleeping" was her way of communicating "I don't want to be here".
Wednesday, November 5, 2008
Jan 1st and Our Yearly Medical Money is Gone
The next really eventful thing that happened was on Jan 1st 2003. Ellie was 6 months old. We were at Grandma G's for New Years Day. Ellie just slept and slept and slept all day long. She wouldn't wake up to eat, we even gave her a bath and she slept right through it. She also wasn't urinating or pooping at all the whole day.
Finally in the late afternoon I decided to drive her to Primary Children's Hospital because something was definitely not right. My Mom came with me.
Well they ran a bizillion tests and one Dr. mentioned Botulism. We spent hours and hours in the ER. I think this was our first ER visit. They decided to admit her to the hospital.
They kept running tests and on her 3rd night in the hospital she went into full respiratory arrest. They called "Code Blue" over the loudspeaker and you have never seen so many Dr.'s, nurses and equipment get to one place so fast. There were over 60 people there within 30 seconds. It was amazing, but very frightening.
They quickly intibated her (put a breathing tube down her throat and pumped the ambu bag to push breaths of air into her. As soon as they had her stable enough, they took her down to ICU.
They had neurosurgery come talk to us in a little conference room. They said they thought she stopped breathing because she had too much pressure on her brain from the hydrocephalus. He said they neede to drain the fluid in her head. They were going to do it right there in the ICU, not even in an operating room. I asked if I could watch and they said no.
I gave consent and they left. They let me see her and she was still intibated and was now hooked up to a ventilator. I was very scared. I think I gave her a kiss and then left her to have her first operation. The name of the procedure is an EVD (External Venticular Drain). So it is a tube that goes into the fluid in her brain(the ventricles), then drains into a bag (externally).
When they were done we got to go see her. She had the breathing tube and ventilator, a tube coming out of her head and I think she might have even had an IV in her head. (She used to be really hard to find good veins for an IV.) She looked really bad.
One of the residents or fellows or someone had saved the hair that they had to shave off. He told me he picked it up off the floor for me. He put it in a baggie labeled "biohazard". It was her first haircut. It was very touching and thoughtful for him to do that.
They said that the fluid looked clear and that was a good sign. Over the next few days they didn't see a lot of pressure or fluid draining. So they removed the EVD.
The head of the ICU department was Dr. Chris Maloney. He suggested that her body was growing bigger and that her brain just couldn't keep up any more. I could not accept this. He showed me scans of her brain. I had no idea how little brain matter she actually had.
Everyone has ventricles and fluid in their brain. Pretend like the following is a normal brain.
This is what I thought her brain was like. Enlarged ventricles, but she had a bigger head, so I just thought that all of her brain matter was there.
This is what her brain is actually like.
They still didn't seem to have any answers as to why she was not waking up, pooping or urinating. There was always a looming "botulism" diagnosis. THe only way to diagnose botulism is to obtain a poop sample, inject a mouse the poop and see if the mouse dies. Well first they couldn't get any poop for a long time. Once they got some, the mouse didn't die for a long time.
But they never came up with any other explanations, so the best explanation was airborne infant botulism. Only infants under 6 months fo age contract this. Botulism spores live everywhere on the earth in dirt. Infants contract it when they are transitioning from bottle or breastfeeding to eating from a spoon. We had just fed her one time, right before she got sick. There are only 100 cases in the US per year and 25 of those are treated at Primary Children's because of our dry dusty environment. You breathe in the Botulism spores. THey go to your intestines where they grow and mutiply. They then travel through your bloodstream throughout your whole body. They attach to every muscle and paralyze them. They do not let the nerves send electrical signals to each other. It does not leave your body, you just have to wait for your body to grow new electrical senders and receptors. So you become completely paralyzed.
Maybe it was because we were refinishing our hardwood floors. Maybe it was because they were tearing down the old McKay Dee Hospital (that we live right by). Who knows.
She did not contract Airborne Infant Botulism because she has special needs. She was just "lucky".
The results of Airborne Infant Botulism last anywhere from 10 days to 1 year. Ellie's lasted longer than that.
At about 3 weeks they told me that they needed to give her a tracheostomy (or Trach). This is a tube that goes through your throat and into your windpipe. Then you can hook the ventilator up to that. She wouldn't need to be intubated any more. I just kept hoping that she was going to get better. The other reasons they gave me for traching her was that being intubated can cause permanent damage to your vocal cords. And being trached is much more comfortable. People who are intubated have to be on sedatives to make them sleep all of the time, or they just gag. I fought it for a few days, but finally agreed. At the same time the ENT put tubes in her ears.
About 3-4 weeks later she went in for surgery again, this time for a Nissen Fundoplication (Nissen) and a Gastrostomy Tube (G-tube). I fought this one again. I still kept hoping she was just going to wake up and everything was going to be fine. But they just keep sending in Dr. after nurse after specialist after therapist to talk you into it. So finally I consented. A nissen is where they surgically tie part of your stomach around itself so that you can't reflux. Because she was paralyzed food would just come right back up, there were no muscles to hold food down. A G-tube is a tube inserted directly into the stomach and food goes right into the stomach. Up to this point she had a tube down one nostril feeding her and a tube down the other nostril draining.
Right before she left they tried talking me into a PIC line (A more permanent IV Line). I absolutely put my foot down. They had talked me into all of these other surgeries and I felt like everthing was out of my control. I wanted to be in control of one thing. So I absolutely refused.
Looking back, of course she needed all of the surgeries that she got. But at the time I felt like I had no choice in the matter and I hated that.
Ellie was in ICU until March 1 (2 full months) then South Davis Rehab for 3 weeks waiting for home health nurses to become available. (When you are on a ventilator it requires 24 hour care/surveilance).
Finally in the late afternoon I decided to drive her to Primary Children's Hospital because something was definitely not right. My Mom came with me.
Well they ran a bizillion tests and one Dr. mentioned Botulism. We spent hours and hours in the ER. I think this was our first ER visit. They decided to admit her to the hospital.
They kept running tests and on her 3rd night in the hospital she went into full respiratory arrest. They called "Code Blue" over the loudspeaker and you have never seen so many Dr.'s, nurses and equipment get to one place so fast. There were over 60 people there within 30 seconds. It was amazing, but very frightening.
They quickly intibated her (put a breathing tube down her throat and pumped the ambu bag to push breaths of air into her. As soon as they had her stable enough, they took her down to ICU.
They had neurosurgery come talk to us in a little conference room. They said they thought she stopped breathing because she had too much pressure on her brain from the hydrocephalus. He said they neede to drain the fluid in her head. They were going to do it right there in the ICU, not even in an operating room. I asked if I could watch and they said no.
I gave consent and they left. They let me see her and she was still intibated and was now hooked up to a ventilator. I was very scared. I think I gave her a kiss and then left her to have her first operation. The name of the procedure is an EVD (External Venticular Drain). So it is a tube that goes into the fluid in her brain(the ventricles), then drains into a bag (externally).
When they were done we got to go see her. She had the breathing tube and ventilator, a tube coming out of her head and I think she might have even had an IV in her head. (She used to be really hard to find good veins for an IV.) She looked really bad.
One of the residents or fellows or someone had saved the hair that they had to shave off. He told me he picked it up off the floor for me. He put it in a baggie labeled "biohazard". It was her first haircut. It was very touching and thoughtful for him to do that.
They said that the fluid looked clear and that was a good sign. Over the next few days they didn't see a lot of pressure or fluid draining. So they removed the EVD.
The head of the ICU department was Dr. Chris Maloney. He suggested that her body was growing bigger and that her brain just couldn't keep up any more. I could not accept this. He showed me scans of her brain. I had no idea how little brain matter she actually had.
Everyone has ventricles and fluid in their brain. Pretend like the following is a normal brain.
This is what I thought her brain was like. Enlarged ventricles, but she had a bigger head, so I just thought that all of her brain matter was there.
This is what her brain is actually like.
They still didn't seem to have any answers as to why she was not waking up, pooping or urinating. There was always a looming "botulism" diagnosis. THe only way to diagnose botulism is to obtain a poop sample, inject a mouse the poop and see if the mouse dies. Well first they couldn't get any poop for a long time. Once they got some, the mouse didn't die for a long time.
But they never came up with any other explanations, so the best explanation was airborne infant botulism. Only infants under 6 months fo age contract this. Botulism spores live everywhere on the earth in dirt. Infants contract it when they are transitioning from bottle or breastfeeding to eating from a spoon. We had just fed her one time, right before she got sick. There are only 100 cases in the US per year and 25 of those are treated at Primary Children's because of our dry dusty environment. You breathe in the Botulism spores. THey go to your intestines where they grow and mutiply. They then travel through your bloodstream throughout your whole body. They attach to every muscle and paralyze them. They do not let the nerves send electrical signals to each other. It does not leave your body, you just have to wait for your body to grow new electrical senders and receptors. So you become completely paralyzed.
Maybe it was because we were refinishing our hardwood floors. Maybe it was because they were tearing down the old McKay Dee Hospital (that we live right by). Who knows.
She did not contract Airborne Infant Botulism because she has special needs. She was just "lucky".
The results of Airborne Infant Botulism last anywhere from 10 days to 1 year. Ellie's lasted longer than that.
At about 3 weeks they told me that they needed to give her a tracheostomy (or Trach). This is a tube that goes through your throat and into your windpipe. Then you can hook the ventilator up to that. She wouldn't need to be intubated any more. I just kept hoping that she was going to get better. The other reasons they gave me for traching her was that being intubated can cause permanent damage to your vocal cords. And being trached is much more comfortable. People who are intubated have to be on sedatives to make them sleep all of the time, or they just gag. I fought it for a few days, but finally agreed. At the same time the ENT put tubes in her ears.
About 3-4 weeks later she went in for surgery again, this time for a Nissen Fundoplication (Nissen) and a Gastrostomy Tube (G-tube). I fought this one again. I still kept hoping she was just going to wake up and everything was going to be fine. But they just keep sending in Dr. after nurse after specialist after therapist to talk you into it. So finally I consented. A nissen is where they surgically tie part of your stomach around itself so that you can't reflux. Because she was paralyzed food would just come right back up, there were no muscles to hold food down. A G-tube is a tube inserted directly into the stomach and food goes right into the stomach. Up to this point she had a tube down one nostril feeding her and a tube down the other nostril draining.
Right before she left they tried talking me into a PIC line (A more permanent IV Line). I absolutely put my foot down. They had talked me into all of these other surgeries and I felt like everthing was out of my control. I wanted to be in control of one thing. So I absolutely refused.
Looking back, of course she needed all of the surgeries that she got. But at the time I felt like I had no choice in the matter and I hated that.
Ellie was in ICU until March 1 (2 full months) then South Davis Rehab for 3 weeks waiting for home health nurses to become available. (When you are on a ventilator it requires 24 hour care/surveilance).
Friday, August 1, 2008
A perfect baby
Ellie was absolutely a perfect baby. She never cried. She was just content with whatever. She was absolutely beautiful. To look at her at this age you can't tell that there is anything wrong with her at all.
I was able to nurse her, which I felt was quite an accomplishment on both of our parts.
Although she never cried, she also never smiled.
I was very happy at this point. I was content and optimistic about the future.
When she was about 3 months old her pediatrician referred us to Early Intervention. We got Speech, Occupational Threapy and Physical Therapy, also a Vision Therapist from the School for the Deaf and Blind. With each of them visiting our home once a week, we were very busy. I loved all of her therapists.
She never needed the oxygen we were sent home with. We did use the apnea monitor at night, in case she stopped breathing it would wake us up.
"A" loved his little sister from the very beginning.
I was able to nurse her, which I felt was quite an accomplishment on both of our parts.
Although she never cried, she also never smiled.
I was very happy at this point. I was content and optimistic about the future.
When she was about 3 months old her pediatrician referred us to Early Intervention. We got Speech, Occupational Threapy and Physical Therapy, also a Vision Therapist from the School for the Deaf and Blind. With each of them visiting our home once a week, we were very busy. I loved all of her therapists.
She never needed the oxygen we were sent home with. We did use the apnea monitor at night, in case she stopped breathing it would wake us up.
"A" loved his little sister from the very beginning.
Subscribe to:
Posts (Atom)
