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".
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