When Hannah was 4 years old her teacher was asked the class the question "Does a horse ride you?" (I happened to be in the room because I was the teacher's aide three times a week). Hannah raised her hand and simply said "yes". Her teacher then proceeded to tell her that she was not correct and that horses do not ride people. Hannah, not being one to argue with her teacher, proceeded to argue and say that horses did ride people. I, of course, was surprised and had to bite my tongue and refrain from interrupting the teacher and reprimand her. Even when her teacher got somewhat cross with her, Hannah stood her ground and insisted that she was correct. She tried her best to explain why she believed that horses ride people and informed the class that when one gets on a horses back, the horse rides them around. Finally I understood what she was trying to say. In her mind, horses do ride people around because people sit on their backs and ride them so, therefore, horses ride people. Once we understood her, we apologized and informed her that she was correct. Her perspective was different from our own.
The same can be said for special needs children and their families. Everyone views the world differently. Some people look at Noah and see his limitations. We look at him and see how far he has progressed. For instance, people pity him because we had to thicken all of his liquids. We celebrate the fact that he no longer has a g-tube and can eat on his own. People are amazed at how much equipment we have to carry everywhere. We celebrate the fact that he is able to be out of the house doing fun things. People look at him in stores when he is being loud. We take joy in every sound he makes because for the longest time he made no sounds and we do not care in the least how loud he talks. People see the ventilator as something scary and intimidating. Our perspective is that it is a vital piece of lifesaving equipment and we are so grateful we have one because the alternative is unthinkable.
So, the next time you encounter one with special needs, please do not perceive them as weak or sad. Do not feel pity for them. Sure, they have limitations but so does everyone. Their life is no less important or happy.
Wednesday, May 9, 2012
Saturday, May 5, 2012
Nursing
I was originally going to write about something else but read something on Facebook that inspired me to write about nursing. I even got into a small facebook fight with some other trach moms. So, if you read this and get offended, I am sorry.
Before being discharged, we found that our insurance did not cover private duty nursing. Many people have stated that they were not allowed to be released from the hospital without having a nursing plan in place. Thankfully, the staff at Children's did not insist this for us, otherwise we would still be there over 2 years later. Noah is on the waiver program but the problem with that is they cannot find ANY nurses who work in the program who have trach and/or ventilator experience. Apparently all of the good nurses work at UAB, Children's and the Veterans Hospital. So, even if we wanted nursing there are none available.
We did find one nurse who had no trach/vent experience who said she was willing to learn. She was a friend of a friend who volunteered to help. I called her and explained the situation and she was willing to do the Medicaid interview. She did the interview, did the drug test, etc. The next thing I knew, my caseworker called me and asked me why she backed out. I had no idea she had changed her mind. Instead of calling me, she just called the agency, which made the agency drop us and refuse to work with us again. I never heard from her again.
Nursing is a touchy subject for many. I can't tell you how many times I read about how incompetent home nursing is and all of the crazy things they do while supposedly taking care of trached/vented children. Mostly the complaints are about the nurses falling asleep. I honestly do not see the big deal with this complaint. If the nurse does fall asleep, they are in the same room with the child and the alarms are so loud they can wake the dead. Beth and Hannah hear Noah's alarms and they are upstairs with their doors closed. Anyone who could sleep through those alarms is either hard of hearing or has taken some kind of sedative. I do understand that they are being paid and as with any job, if you fall asleep you are basically getting paid to do nothing. In that respect, it would annoy me. But only for that reason.
I had at least 2 trach mommies say that trach children are never stable and if they were stable they would not need machines to help them breathe and to check their oxygen levels so that is why they need nursing constantly and someone to sit by their bed at night. I strongly disagree with this. Noah is extremely stable. If he was not, he would be in the hospital. Yes he needs a ventilator to sleep and we hook him to a pulse ox as a backup alarm but this does not make him unstable. I know things can happen but we have multiple machines that alarm. We even had to turn of one of his vent alarms because he has a trach leak and the vent would beep constantly. I neglected to tell those ladies that tidbit because I figured I would be named the worst mother ever. We use his pulse ox as a back up alarm. If his oxygen falls below the required setting then it will alarm and let me know he is not getting enough oxygen. 99% of his alarms are false (disconnections, water in the line, high pressure from him coughing, sensor off, etc). In my opinion, he is very stable. I would never put him in any danger and if I felt that we needed a nurse, I would fight to get him one. I do not feel that he has to have someone to hover over him 24/7 just because he has a trach and a ventilator.
People do not understand that Noah is exactly like them. He is extremely healthy. The only reason he has a trach is because he needs a vent to help him breathe. I am a little more careful with germs and if someone is sick, I do not knowingly expose him. However, I refuse to live in a bubble just because he has a trach. Many of these moms never take their kids anywhere and let the nurse just stay at home with them while they go out to run errands or get away for awhile. I understand how hard it is to pack everything up and load the car. But, I quickly decided that I did not want Noah to be punished because he has a trach. I want him to experience all of the things that the girls were exposed to (the zoo, the park, grocery stores, etc). In my opinion, it is vital for him to be out in the environment so that he can learn. Being on a vent 24/7 would make things a lot harder as far as driving in the car (if they disconnect you would have to pull over immediately and put the circuit back), carrying them on the vent to the car would be tough and loading and unloading the equipment (and him) in a stroller would be a pain. But, I would do it for him and for my mental health. This is where nursing would have been helpful. However, many agencies tell their clients that nurses cannot travel with the patient, which doesnt help whatsoever.
I constantly hear people complain about scheduling nurses. They call in and have no replacements. They show up sick and expose the trached child to their germs. I can't imagine how frustrating this would be. Many times I hear parents say how they will have to stay up for the next several nights because they have no nurses for whatever reason. I really do not understand why they cannot sleep too. I truly feel that if one is totally responsible for the care of their trached/vented child every night that they would be more alert and able to respond to the alarms.
Back when Noah was in the hospital, we could not stay with him and had to visit when we could. I remember one of the nurses asking me if Noah liked something and realized that I had no idea. This was my child and I had not spent enough time with him to know his preferences. That really upset me and I vowed that it would never happen again. I know that this was nothing I could control. I did the best I could under the circumstances but it was very upsetting. I promised myself right then that the nurses would not know more about my son than I.
Please do not think that I feel nurses are incompetent. That is not the case. I truly love those NICU nurses who bought Noah clothes and made him his own trach box. There was one favorite nurse that Noah had for several months while in the hospital. She was wonderful with him and truly seemed to care about him and us. She even stocked us up on supplies before we were discharged. Noah's home vent nurse is like our family. She returns my calls promptly, listens to my concerns, and actually asks my opinion on things. We work as a team to make sure Noah has the best care possible and that is invaluable. If I could hire one of these two ladies to take care of him at night, I would do so without a second thought and know that he would be in good hands.
Regardless, nursing is a luxury with which we were not afforded. I do know firsthand that trach/vent dependent people can live at home and have no nursing help. It is difficult sometimes, especially when Noah is sick or he alarms several times a night. But, we have our privacy. I think that on those nights when Noah alarms a lot, a nurse would have been helpful. However, after reading so many complaints about home nursing, I am glad we do not have to worry with the whole situation.
I respect the moms who say that they cannot live without nursing. Please do the same courtesy for those of us who do not have nursing. We love our children just the same so do not imply that we are bad parents who are putting our children in danger just because we do not have someone sitting by their bed 24/7.
Before being discharged, we found that our insurance did not cover private duty nursing. Many people have stated that they were not allowed to be released from the hospital without having a nursing plan in place. Thankfully, the staff at Children's did not insist this for us, otherwise we would still be there over 2 years later. Noah is on the waiver program but the problem with that is they cannot find ANY nurses who work in the program who have trach and/or ventilator experience. Apparently all of the good nurses work at UAB, Children's and the Veterans Hospital. So, even if we wanted nursing there are none available.
We did find one nurse who had no trach/vent experience who said she was willing to learn. She was a friend of a friend who volunteered to help. I called her and explained the situation and she was willing to do the Medicaid interview. She did the interview, did the drug test, etc. The next thing I knew, my caseworker called me and asked me why she backed out. I had no idea she had changed her mind. Instead of calling me, she just called the agency, which made the agency drop us and refuse to work with us again. I never heard from her again.
Nursing is a touchy subject for many. I can't tell you how many times I read about how incompetent home nursing is and all of the crazy things they do while supposedly taking care of trached/vented children. Mostly the complaints are about the nurses falling asleep. I honestly do not see the big deal with this complaint. If the nurse does fall asleep, they are in the same room with the child and the alarms are so loud they can wake the dead. Beth and Hannah hear Noah's alarms and they are upstairs with their doors closed. Anyone who could sleep through those alarms is either hard of hearing or has taken some kind of sedative. I do understand that they are being paid and as with any job, if you fall asleep you are basically getting paid to do nothing. In that respect, it would annoy me. But only for that reason.
I had at least 2 trach mommies say that trach children are never stable and if they were stable they would not need machines to help them breathe and to check their oxygen levels so that is why they need nursing constantly and someone to sit by their bed at night. I strongly disagree with this. Noah is extremely stable. If he was not, he would be in the hospital. Yes he needs a ventilator to sleep and we hook him to a pulse ox as a backup alarm but this does not make him unstable. I know things can happen but we have multiple machines that alarm. We even had to turn of one of his vent alarms because he has a trach leak and the vent would beep constantly. I neglected to tell those ladies that tidbit because I figured I would be named the worst mother ever. We use his pulse ox as a back up alarm. If his oxygen falls below the required setting then it will alarm and let me know he is not getting enough oxygen. 99% of his alarms are false (disconnections, water in the line, high pressure from him coughing, sensor off, etc). In my opinion, he is very stable. I would never put him in any danger and if I felt that we needed a nurse, I would fight to get him one. I do not feel that he has to have someone to hover over him 24/7 just because he has a trach and a ventilator.
People do not understand that Noah is exactly like them. He is extremely healthy. The only reason he has a trach is because he needs a vent to help him breathe. I am a little more careful with germs and if someone is sick, I do not knowingly expose him. However, I refuse to live in a bubble just because he has a trach. Many of these moms never take their kids anywhere and let the nurse just stay at home with them while they go out to run errands or get away for awhile. I understand how hard it is to pack everything up and load the car. But, I quickly decided that I did not want Noah to be punished because he has a trach. I want him to experience all of the things that the girls were exposed to (the zoo, the park, grocery stores, etc). In my opinion, it is vital for him to be out in the environment so that he can learn. Being on a vent 24/7 would make things a lot harder as far as driving in the car (if they disconnect you would have to pull over immediately and put the circuit back), carrying them on the vent to the car would be tough and loading and unloading the equipment (and him) in a stroller would be a pain. But, I would do it for him and for my mental health. This is where nursing would have been helpful. However, many agencies tell their clients that nurses cannot travel with the patient, which doesnt help whatsoever.
I constantly hear people complain about scheduling nurses. They call in and have no replacements. They show up sick and expose the trached child to their germs. I can't imagine how frustrating this would be. Many times I hear parents say how they will have to stay up for the next several nights because they have no nurses for whatever reason. I really do not understand why they cannot sleep too. I truly feel that if one is totally responsible for the care of their trached/vented child every night that they would be more alert and able to respond to the alarms.
Back when Noah was in the hospital, we could not stay with him and had to visit when we could. I remember one of the nurses asking me if Noah liked something and realized that I had no idea. This was my child and I had not spent enough time with him to know his preferences. That really upset me and I vowed that it would never happen again. I know that this was nothing I could control. I did the best I could under the circumstances but it was very upsetting. I promised myself right then that the nurses would not know more about my son than I.
Please do not think that I feel nurses are incompetent. That is not the case. I truly love those NICU nurses who bought Noah clothes and made him his own trach box. There was one favorite nurse that Noah had for several months while in the hospital. She was wonderful with him and truly seemed to care about him and us. She even stocked us up on supplies before we were discharged. Noah's home vent nurse is like our family. She returns my calls promptly, listens to my concerns, and actually asks my opinion on things. We work as a team to make sure Noah has the best care possible and that is invaluable. If I could hire one of these two ladies to take care of him at night, I would do so without a second thought and know that he would be in good hands.
Regardless, nursing is a luxury with which we were not afforded. I do know firsthand that trach/vent dependent people can live at home and have no nursing help. It is difficult sometimes, especially when Noah is sick or he alarms several times a night. But, we have our privacy. I think that on those nights when Noah alarms a lot, a nurse would have been helpful. However, after reading so many complaints about home nursing, I am glad we do not have to worry with the whole situation.
I respect the moms who say that they cannot live without nursing. Please do the same courtesy for those of us who do not have nursing. We love our children just the same so do not imply that we are bad parents who are putting our children in danger just because we do not have someone sitting by their bed 24/7.
Monday, April 23, 2012
The Equipment
Babies are a lot of work. It's difficult to just get up and walk out of the door without planning because babies need diapers, food, extra clothes, toys, etc. There is a lot of planning and packing for trips. Babies with special needs are even more work. Packing takes forever because you have to check and double check that you didnt forget anything. After all, you can't just run to a local Wal Mart and pick up some vent circuits, trach ties, or pulse ox probes. Even after all of the packing, when you get to your destination you have to unpack everything and figure out how to set up all of the equipment in a strange place. It's a lot of hard work just to go on vacation but the fact is that us SN parents really need a break from the daily grind and it is worth a little extra effort to get away for awhile.
When Noah first came home from the hospital he had a vent, apnea machine, pulse ox, CO2 monitor, suction machine, feeding pump, plus all of the supplies that go to this equipment (leads, circuits, filters, etc.), plus all of the supplies for trach care (extra trachs, trach ties, suction catheters, etc). I remember the first day home was so wonderful and scary. Beth had her first band recital that night and Hannah ended up having a tummy bug. We were so ready to get Noah home that we didn't care about any of that. We rushed from the hospital and the DME (the equipment company) came to our home shortly thereafter. We set everything up and they brought our supplies. We were still so new at getting Noah out that we decided to leave him at home with his grandmother (Hannah stayed also since she was still sick) and we went to the concert. Once we got home and everyone left, we tried to settle in to our new "normal". We hooked Noah up to his vent, pulse ox, CO2 machine, feeding pump and apnea machine. He had so many wires on him that he looked like a science experiment. We were so tired emotionally and physically that we went to bed early. Needless to say, we didn't sleep. We immediately decided to turn off the apnea monitor. It seemed useless anyway because we knew he didn't breathe much while sleeping so the thing was constantly alarming. After a few nights of more beeping, we decided to unhook the CO2 machine and just do spot checks because water was getting in the line and messing up the readings. After about a week or so, we finally were able to relax a little. Then Noah got sick. I called his nurse and they phoned in breathing treatments, antibiotics and oxygen. We did not have any of this in the hospital so there were a few nights there that we had to get use to the new equipment (oxygen concentrator and nebulizer). Eventually, he got better. We were able to wean him off the vent (not because he couldn't tolerate it but because it made us nervous for him to be off of the vent). Eventually we got rid of the feeding pump. Now we have the vent, pulse ox (which we use every night), CO2 machine (which we do spot checks), suction machine, oxygen concentrator (which we use only when he's sick). Depending on how long the trip, sometimes we even leave the vent at home or in the car. We usually leave the suction machine in the car. Noah's "go bag" goes everywhere he goes. This bag contains everything needed for emergency trach changes and has an ambu bag (that blue resucitation bag you see on tv all of the time). Traveling around town is still somewhat of a pain but it is much easier now.
Vacation is another matter. Noah has 4 suitcases. One with all of the normal baby stuff, one with all of the vent supplies (circuits, filters, swivels, water bags, etc), one with all of the trach supplies (trachs, trach ties, extra catheters, gauze, saline bullets, etc), and one for just all of the power cords. Every machine has its own power cord and we always take our own surge protector plus extension cords and a stool to place the ventilator humidifier. Then we have all of our suitcases. Plus, blow up bed or playpen for Noah to sleep. Not to mention the huge stroller that we need to carry the equipment if we go out all day somewhere. Chris bought a roof bag, which helps tremendously.
Over the last two years, we have learned a lot about traveling and packing for trips with all of our extra baggage. If there are any moms (especially SN moms) out there who have questions or want to see pictures of our setup, please feel free to comment or email me.
Traveling with a SN child is difficult but manageable. The equipment is a pain to deal with but it keeps our son alive.
When Noah first came home from the hospital he had a vent, apnea machine, pulse ox, CO2 monitor, suction machine, feeding pump, plus all of the supplies that go to this equipment (leads, circuits, filters, etc.), plus all of the supplies for trach care (extra trachs, trach ties, suction catheters, etc). I remember the first day home was so wonderful and scary. Beth had her first band recital that night and Hannah ended up having a tummy bug. We were so ready to get Noah home that we didn't care about any of that. We rushed from the hospital and the DME (the equipment company) came to our home shortly thereafter. We set everything up and they brought our supplies. We were still so new at getting Noah out that we decided to leave him at home with his grandmother (Hannah stayed also since she was still sick) and we went to the concert. Once we got home and everyone left, we tried to settle in to our new "normal". We hooked Noah up to his vent, pulse ox, CO2 machine, feeding pump and apnea machine. He had so many wires on him that he looked like a science experiment. We were so tired emotionally and physically that we went to bed early. Needless to say, we didn't sleep. We immediately decided to turn off the apnea monitor. It seemed useless anyway because we knew he didn't breathe much while sleeping so the thing was constantly alarming. After a few nights of more beeping, we decided to unhook the CO2 machine and just do spot checks because water was getting in the line and messing up the readings. After about a week or so, we finally were able to relax a little. Then Noah got sick. I called his nurse and they phoned in breathing treatments, antibiotics and oxygen. We did not have any of this in the hospital so there were a few nights there that we had to get use to the new equipment (oxygen concentrator and nebulizer). Eventually, he got better. We were able to wean him off the vent (not because he couldn't tolerate it but because it made us nervous for him to be off of the vent). Eventually we got rid of the feeding pump. Now we have the vent, pulse ox (which we use every night), CO2 machine (which we do spot checks), suction machine, oxygen concentrator (which we use only when he's sick). Depending on how long the trip, sometimes we even leave the vent at home or in the car. We usually leave the suction machine in the car. Noah's "go bag" goes everywhere he goes. This bag contains everything needed for emergency trach changes and has an ambu bag (that blue resucitation bag you see on tv all of the time). Traveling around town is still somewhat of a pain but it is much easier now.
Vacation is another matter. Noah has 4 suitcases. One with all of the normal baby stuff, one with all of the vent supplies (circuits, filters, swivels, water bags, etc), one with all of the trach supplies (trachs, trach ties, extra catheters, gauze, saline bullets, etc), and one for just all of the power cords. Every machine has its own power cord and we always take our own surge protector plus extension cords and a stool to place the ventilator humidifier. Then we have all of our suitcases. Plus, blow up bed or playpen for Noah to sleep. Not to mention the huge stroller that we need to carry the equipment if we go out all day somewhere. Chris bought a roof bag, which helps tremendously.
Over the last two years, we have learned a lot about traveling and packing for trips with all of our extra baggage. If there are any moms (especially SN moms) out there who have questions or want to see pictures of our setup, please feel free to comment or email me.
Traveling with a SN child is difficult but manageable. The equipment is a pain to deal with but it keeps our son alive.
Tuesday, April 10, 2012
Welcome to my nightmare
I love the 80s. I love horror movies. One of my old favorites is Nightmare on Elm Street. For those of you who do not like horror movies or haven't seen it the movie is about a group of teenagers who do their best to stay awake. When they fall asleep, a very scary man named Freddy comes to them in their dream and kills them in real life with his razor sharp knife glove. So they do everything they can to stay awake--drink tons of coffee, set their alarm to wake up every so often, make their friends sit by their bed and keep watch to wake them at any sign of distress, etc. Nothing worked because they always fell asleep. You sleep, you die.
This is how I view CCHS. Everyone has to sleep. There is no possible way to stay awake indefinitely. You may be able to stay awake for a day or even 2 days but eventually your body will give in and you sleep. I think this is what makes CCHS so unique and scary. You can't not sleep. You can do everything in your power to stay awake but you will lose every time. With CCHS, you sleep you die (if you are not hooked to your vent).
I do not do well on little sleep. I have always been a good sleeper (until I had kids). When I was a teenager, my parents had our house remodeled by adding a den. One morning I awoke to find that the back wall of the dining room was gone. I heard nothing and slept right through the demolition. If I did not get my 8 hours, then I was pretty much useless the next day.
After the girls were born, I was still able to get some sleep but I did sleep more lightly. I heard them when they would get up and sometimes even if they coughed it would wake me up. Then comes Noah and there goes my sleep. The irony is that he is a great sleeper. He was sleeping through the night at 4 months. When he was discharged from the hospital, he was on a feeding pump. We would hook him up to it at bedtime and it would run slowly all night enabling me to forgo those nightly feedings. Sounds good doesn't it? Well, it did to me too.
What I didn't expect was all of the alarms. Between the vent and the sat monitor, I was up several times a night. The first month was brutal because I was so worried something would happen to him on my watch. We have never had nursing because BCBS doesn't cover it. Once he qualified for Medicaid, we were supposedly able to get nursing but no nursing agency that Medicaid uses has anyone who knows anything about trachs and vents. So I still did not get a nurse. After awhile, I began to sleep again. In fact, I got so tired that I could sleep anywhere, anytime. I can even sleep sitting up.
The doctors and professionals do not tell you about sleep deprivation. They do not teach you how to deal with little to no sleep. Sleep deprivation invades every part of your life. It affects your ability to do every day tasks (cooking, driving, cleaning, etc), affects your relationships (you are more grumpy with people, can't stay awake at night to socialize with your family), affects your health (weight, blood sugar, etc), affects your memory (you can't remember appointments, go to the store without a list and forget half of what you need, etc), affects your social life (you are too sleepy to go out , go to church, etc), makes you neglect yourself (who cares what you look like? You are doing good just to be dressed). Sleep deprivation is incredibly difficult. Add in the fact that your child's life depends on you being alert for all of the alarms (most of them false) and you realize that you will never sleep well again.
You sleep-- your child dies. How crazy is that? This is the nature of CCHS. Its the worst form of torture.
Eventually, your body will adjust, although it is still so hard. Many mornings I have 4-5 cups of coffee and several diet cokes a day. Not good for my body but necessary to function. I try to grab naps when I can. My house is a wreck because when Noah naps, I usually try to nap. On a good night, I only get up about 2 times. On a bad night, its 5 or more times. Noah, of course, sleeps through it all, although I know he doesnt sleep as well as he should because the alarms are so loud. 99% of the alarms are false. Low min vol--there is a leak somewhere (we actually turned off this alarm because he has a leak around his trach and it caused the vent to alarm constantly), disc sense--that means there is water in the line and the circuit needs to be drained. It can also mean the circuit is upside down and has to be turned over, High peep--usually means water is in the peep and has to be dumped, high pressure--he coughs or fusses a little, low pressure--he has pulled the circuit off, sat monitor beeping usually means the sensor is off (we only get 2 sensors a month and have to use the thing every time he sleeps. This is ridiculous. I will address this in a later post). Then there are the nights when he beeps and you have no idea why. Maybe a connection is loose, maybe there is a small bubble in the line, maybe the equipment is malfunctioning. The other night the sat monitor kept going off and he was at 100%!! I called the next morning and guess what their answer to that was--I DON"T KNOW (see my previous post for my feelings on this answer). They did come change the machine out and the alarms stopped. There are so many things that alarm. In the middle of the night when they are all alarming, it is dark and you are so incredibly tired, you just want to throw it all out the window or run away screaming. Then there are the nights when he alarms, I go in and fix the problem. As soon as I lay back down, he alarms again. There have been a few nights I am in tears because I am so tired.
I am telling you this so you can be aware of how incredibly difficult it is sometimes for parents of special needs children. If we are less patient, more grumpy, not as social, lack of sleep is usually the reason. For you special needs parents out there, hang in there. You will have your good days and bad days. Just realize that eventually your body will make you sleep. Sleep is like a drug. You will crave it and try to plan your life around the next time you can get some sleep. Don't let it get the best of you. Allow yourself to rest when you can, even if things do not get done (cleaning, dinner, etc). Realize that the doctors/specialists are no help because all they do is tell you to get more sleep, which is impossible when your child is on life support. (ex: my doctor said to get more exercise. I asked her which gym takes special needs children. There was a long pause and she said "I DON'T KNOW". They never know because they don't have to live it, besides the fact that there is no gym that takes care of SN kids). Realize that you are doing the best you can under the circumstances and be proud of yourself for surviving.
You sleep-your child dies. Welcome to my nightmare.
This is how I view CCHS. Everyone has to sleep. There is no possible way to stay awake indefinitely. You may be able to stay awake for a day or even 2 days but eventually your body will give in and you sleep. I think this is what makes CCHS so unique and scary. You can't not sleep. You can do everything in your power to stay awake but you will lose every time. With CCHS, you sleep you die (if you are not hooked to your vent).
I do not do well on little sleep. I have always been a good sleeper (until I had kids). When I was a teenager, my parents had our house remodeled by adding a den. One morning I awoke to find that the back wall of the dining room was gone. I heard nothing and slept right through the demolition. If I did not get my 8 hours, then I was pretty much useless the next day.
After the girls were born, I was still able to get some sleep but I did sleep more lightly. I heard them when they would get up and sometimes even if they coughed it would wake me up. Then comes Noah and there goes my sleep. The irony is that he is a great sleeper. He was sleeping through the night at 4 months. When he was discharged from the hospital, he was on a feeding pump. We would hook him up to it at bedtime and it would run slowly all night enabling me to forgo those nightly feedings. Sounds good doesn't it? Well, it did to me too.
What I didn't expect was all of the alarms. Between the vent and the sat monitor, I was up several times a night. The first month was brutal because I was so worried something would happen to him on my watch. We have never had nursing because BCBS doesn't cover it. Once he qualified for Medicaid, we were supposedly able to get nursing but no nursing agency that Medicaid uses has anyone who knows anything about trachs and vents. So I still did not get a nurse. After awhile, I began to sleep again. In fact, I got so tired that I could sleep anywhere, anytime. I can even sleep sitting up.
The doctors and professionals do not tell you about sleep deprivation. They do not teach you how to deal with little to no sleep. Sleep deprivation invades every part of your life. It affects your ability to do every day tasks (cooking, driving, cleaning, etc), affects your relationships (you are more grumpy with people, can't stay awake at night to socialize with your family), affects your health (weight, blood sugar, etc), affects your memory (you can't remember appointments, go to the store without a list and forget half of what you need, etc), affects your social life (you are too sleepy to go out , go to church, etc), makes you neglect yourself (who cares what you look like? You are doing good just to be dressed). Sleep deprivation is incredibly difficult. Add in the fact that your child's life depends on you being alert for all of the alarms (most of them false) and you realize that you will never sleep well again.
You sleep-- your child dies. How crazy is that? This is the nature of CCHS. Its the worst form of torture.
Eventually, your body will adjust, although it is still so hard. Many mornings I have 4-5 cups of coffee and several diet cokes a day. Not good for my body but necessary to function. I try to grab naps when I can. My house is a wreck because when Noah naps, I usually try to nap. On a good night, I only get up about 2 times. On a bad night, its 5 or more times. Noah, of course, sleeps through it all, although I know he doesnt sleep as well as he should because the alarms are so loud. 99% of the alarms are false. Low min vol--there is a leak somewhere (we actually turned off this alarm because he has a leak around his trach and it caused the vent to alarm constantly), disc sense--that means there is water in the line and the circuit needs to be drained. It can also mean the circuit is upside down and has to be turned over, High peep--usually means water is in the peep and has to be dumped, high pressure--he coughs or fusses a little, low pressure--he has pulled the circuit off, sat monitor beeping usually means the sensor is off (we only get 2 sensors a month and have to use the thing every time he sleeps. This is ridiculous. I will address this in a later post). Then there are the nights when he beeps and you have no idea why. Maybe a connection is loose, maybe there is a small bubble in the line, maybe the equipment is malfunctioning. The other night the sat monitor kept going off and he was at 100%!! I called the next morning and guess what their answer to that was--I DON"T KNOW (see my previous post for my feelings on this answer). They did come change the machine out and the alarms stopped. There are so many things that alarm. In the middle of the night when they are all alarming, it is dark and you are so incredibly tired, you just want to throw it all out the window or run away screaming. Then there are the nights when he alarms, I go in and fix the problem. As soon as I lay back down, he alarms again. There have been a few nights I am in tears because I am so tired.
I am telling you this so you can be aware of how incredibly difficult it is sometimes for parents of special needs children. If we are less patient, more grumpy, not as social, lack of sleep is usually the reason. For you special needs parents out there, hang in there. You will have your good days and bad days. Just realize that eventually your body will make you sleep. Sleep is like a drug. You will crave it and try to plan your life around the next time you can get some sleep. Don't let it get the best of you. Allow yourself to rest when you can, even if things do not get done (cleaning, dinner, etc). Realize that the doctors/specialists are no help because all they do is tell you to get more sleep, which is impossible when your child is on life support. (ex: my doctor said to get more exercise. I asked her which gym takes special needs children. There was a long pause and she said "I DON'T KNOW". They never know because they don't have to live it, besides the fact that there is no gym that takes care of SN kids). Realize that you are doing the best you can under the circumstances and be proud of yourself for surviving.
You sleep-your child dies. Welcome to my nightmare.
Monday, April 2, 2012
I Don't Know
I don't know. I always hated those three little words because I always thought there was a reason for everything. When teaching kindergarten: "Why did you hit him? I don't know" (the answer is because he annoyed you), "Why did you just throw your whole juice box away without drinking it? I don't know" (the answer is because you didnt like the flavor your mom sent you). At home: "Why did you leave your math book in your locker when you knew you had a test (this one is for Beth). I don't know", (the answer is you forgot it). For each and every one of these questions, there was an answer and it frustrated me to no end that the person would act clueless.
August 26, 2009 was one of the most exciting and sad days of my life. I went into labor that morning at 2 am. Noah was born around noon. It was an uneventful pregnancy (other than gestational diabetes which I had with both Beth and Hannah). Actually, it was the easiest pregnancy of all three children because I was not sick at all. Even though Noah was a month early, I knew he was big enough to survive with no problems. When he was born, he did not make any noise for awhile, which worried me. In fact, he never cried, just made a small noise. Mother's intuition kicked in and even though they said everything was good, I still felt uneasy. Soon after his birth, Chris left to go check the girls out of school and I was able to cuddle him. I noticed that he had a blue tinge to his lips. The nurse came in and took him to the nurses station to check his sats. She came back in a few minutes later and was holding an oxygen mask over his face. She informed me that his sats were a little low and that she was going to stay in there with us and check him for awhile. She then rolled him out again. The next thing I knew they were asking where Chris was and informed me they were going to take him to the NICU for awhile because his sats were low. They said they could only wait 5 more minutes then they would take him. I called Chris in a panic and he was in the parking deck so they waited. The girls came in and were able to spend about 5 minutes with him. We were able to get one picture of us with him and then they took him away. Of course, I was a basket case and holding it together for the girls was extremely difficult. Little did I know our long journey was just beginning. The girls did not get to see Noah again until he was almost 3 months old. In fact, nobody but Chris or I was allowed to go to the NICU because that was the year of the swine flu and they were overly cautious.
When he got to the NICU, they ran every test known to man. He was pricked and poked so many times that he still has little white scars all over his hands and feet. He hated anyone to mess with his feet and it took him a very long time to get over that. One of the worst days was when we came in the NICU to visit and he had an IV in his head. That was heartbreaking. All of his tests came back normal. They told us he would only be in the NICU for a few days. When we asked when he would come home they said "I dont know". When we asked when tests results would be back they said "I don't know". WHAT IS WRONG WITH MY BABY ??? I DON"T KNOW. I have never been so frustrated in my life. Finally after a week and a half he had a seizure and had to be intubated because his CO2 was so high. "Why is his CO2 so high? I don't know". So because we dont know we are going to pump him with Phenobarbital which makes him sleep (NOT GOOD FOR A CCHS PATIENT but at the time they didn't "know" he had CCHS). We finally had him moved to Children's Hospital because it was clear ST. Vincents had no idea what to do with him. Before we left, the doctor came in and gave us this one sheet of paper and told us they were checking for Congenital Central Hypoventilation Syndrome, which is an extremely rare disease. She then informed us he would more than likely be institutionalized the rest of his life then left so we could "digest the information". I have never felt so helpless in my life.
After being in Children's NICU for several weeks we got the diagnosis and it was in fact CCHS. So now the answer was we DO KNOW whats wrong with your baby and we can manage it.
So that is why I do not like the words I DONT KNOW. There has to be an answer to everything right? I now realize that there may be an answer but you may never know what it is. Why do things like CCHS exist? I don't know. Why can't you use all of this advanced technology to come up with something better than a heavy ventilator? I don't know. Why is there not a drug out there to help him breathe better? I don't know. Why is it such a struggle day to day dealing with this stupid disease? I don't know. How is it going to affect him in his later years when he wants to live on his own? I don't know.
So when you see me, and if I ask you a question please do not respond with "I don't know". I have enough of this answer for a lifetime.
August 26, 2009 was one of the most exciting and sad days of my life. I went into labor that morning at 2 am. Noah was born around noon. It was an uneventful pregnancy (other than gestational diabetes which I had with both Beth and Hannah). Actually, it was the easiest pregnancy of all three children because I was not sick at all. Even though Noah was a month early, I knew he was big enough to survive with no problems. When he was born, he did not make any noise for awhile, which worried me. In fact, he never cried, just made a small noise. Mother's intuition kicked in and even though they said everything was good, I still felt uneasy. Soon after his birth, Chris left to go check the girls out of school and I was able to cuddle him. I noticed that he had a blue tinge to his lips. The nurse came in and took him to the nurses station to check his sats. She came back in a few minutes later and was holding an oxygen mask over his face. She informed me that his sats were a little low and that she was going to stay in there with us and check him for awhile. She then rolled him out again. The next thing I knew they were asking where Chris was and informed me they were going to take him to the NICU for awhile because his sats were low. They said they could only wait 5 more minutes then they would take him. I called Chris in a panic and he was in the parking deck so they waited. The girls came in and were able to spend about 5 minutes with him. We were able to get one picture of us with him and then they took him away. Of course, I was a basket case and holding it together for the girls was extremely difficult. Little did I know our long journey was just beginning. The girls did not get to see Noah again until he was almost 3 months old. In fact, nobody but Chris or I was allowed to go to the NICU because that was the year of the swine flu and they were overly cautious.
When he got to the NICU, they ran every test known to man. He was pricked and poked so many times that he still has little white scars all over his hands and feet. He hated anyone to mess with his feet and it took him a very long time to get over that. One of the worst days was when we came in the NICU to visit and he had an IV in his head. That was heartbreaking. All of his tests came back normal. They told us he would only be in the NICU for a few days. When we asked when he would come home they said "I dont know". When we asked when tests results would be back they said "I don't know". WHAT IS WRONG WITH MY BABY ??? I DON"T KNOW. I have never been so frustrated in my life. Finally after a week and a half he had a seizure and had to be intubated because his CO2 was so high. "Why is his CO2 so high? I don't know". So because we dont know we are going to pump him with Phenobarbital which makes him sleep (NOT GOOD FOR A CCHS PATIENT but at the time they didn't "know" he had CCHS). We finally had him moved to Children's Hospital because it was clear ST. Vincents had no idea what to do with him. Before we left, the doctor came in and gave us this one sheet of paper and told us they were checking for Congenital Central Hypoventilation Syndrome, which is an extremely rare disease. She then informed us he would more than likely be institutionalized the rest of his life then left so we could "digest the information". I have never felt so helpless in my life.
After being in Children's NICU for several weeks we got the diagnosis and it was in fact CCHS. So now the answer was we DO KNOW whats wrong with your baby and we can manage it.
So that is why I do not like the words I DONT KNOW. There has to be an answer to everything right? I now realize that there may be an answer but you may never know what it is. Why do things like CCHS exist? I don't know. Why can't you use all of this advanced technology to come up with something better than a heavy ventilator? I don't know. Why is there not a drug out there to help him breathe better? I don't know. Why is it such a struggle day to day dealing with this stupid disease? I don't know. How is it going to affect him in his later years when he wants to live on his own? I don't know.
So when you see me, and if I ask you a question please do not respond with "I don't know". I have enough of this answer for a lifetime.
Tuesday, March 27, 2012
Ondine's Curse
It took me forever to figure out a name for my blog. I really wanted to use "Trach This" but Chris stole it :). So, I decided to go with Your Curse is My Miracle.
Last year Chris was invited to write a short piece for our church's devotional book. His piece made me cry because it was about Noah. He entitled it Your Curse is My Miracle. So thanks, Chris, for my blog name.
As many of you know, my son has a very rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS). ( Anytime I say CCHS in my blog, it will refer to his disorder and not a local school, Clay Chalkville High School). He is one of 4 people in Alabama to have this and one of around 800 worldwide. (numbers are estimates). This disorder is one that affects the autonomic nervous system (ANS). Noah's brain does not tell his body to breathe, causing his CO2 to rise while sleeping so he must have some form of mechanical ventilation the rest of his life. Currently, he has a trach and a ventilator. His mutation (mutation being the PHOX2B gene mutation) is 20/25. Normal in you and me is 20/20. He is considered mild and only needs his ventilator when sleeping or sick. He has a lot of medical equipment, which I will talk about in a future post. We have to constantly monitor his CO2 and oxygen levels. Some patients with CCHS have abnormalities in heart rate, heart problems such as arrhythmia and bradycardia, blood pressure problems, eye problems, neural crest tumors, bowel problems (Hirsprungs Disease), temperature control problems and I am sure I left some things out. Noah has some of the eye issues, swallowing issues, had bradycardia as a baby and temperature control problems. We go annually to sleep studies to check ventilator settings. Also bronchoscopies are done annually (this is where they sedate him and scope the trach/throat area to check for granulomas, which is scar tissue). We also have home vent clinic several times a year, annual holter monitoring (heart monitor), and endless therapies.
Another name for CCHS, is Ondine's Curse. However, I am not very partial to this one and do not use it often. According to the myth, there was a water nymph who had an unfaithful mortal lover. He swore to her that "every waking breath would be a testimony of his love". When she found out he was cheating on her, she cursed him so that if he should fall asleep he would forget to breathe. Eventually he fell asleep and he stopped breathing. (Taken from Wikipedia).
Now, you may think that having a child with a trach and ventilator is difficult. You are so right. We have to be very careful and take the vent everywhere with us. There is a lot of equipment to maintain and tons of supplies to organize and store. Traveling is very challenging because we have to take our mini ICU with us (we call our van the traveling ambulance). It is a very hard way to live. But, do we see it as a curse? NO!!!!! We have a love/hate relationship with all of the equipment because without it, Noah would die. So we hate having to care for it, lug it around all of the time, worry about it failing, etc but we desperately need it.
We see Noah as our miracle. CCHS is extremely difficult to diagnosis. In fact, the NICU doctors had no idea what was wrong with him at first. They had only seen one case of CCHS the entire time they practiced medicine. Our pediatrition had only heard of it but never knew anyone to have it. It is a miracle to us that he was diagnosed so early so that we could begin the life saving treatment. Because of this, he has no cognitive problems and is extremely healthy.
So you see, Noah is not our curse at all. He is our miracle. He is extremely tough and resiliant because he has been through so much in his short life. He has taught us so much about ourselves and has changed our perspective on life. He is not our curse, he is our blessing. Our own personal little miracle.
Last year Chris was invited to write a short piece for our church's devotional book. His piece made me cry because it was about Noah. He entitled it Your Curse is My Miracle. So thanks, Chris, for my blog name.
As many of you know, my son has a very rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS). ( Anytime I say CCHS in my blog, it will refer to his disorder and not a local school, Clay Chalkville High School). He is one of 4 people in Alabama to have this and one of around 800 worldwide. (numbers are estimates). This disorder is one that affects the autonomic nervous system (ANS). Noah's brain does not tell his body to breathe, causing his CO2 to rise while sleeping so he must have some form of mechanical ventilation the rest of his life. Currently, he has a trach and a ventilator. His mutation (mutation being the PHOX2B gene mutation) is 20/25. Normal in you and me is 20/20. He is considered mild and only needs his ventilator when sleeping or sick. He has a lot of medical equipment, which I will talk about in a future post. We have to constantly monitor his CO2 and oxygen levels. Some patients with CCHS have abnormalities in heart rate, heart problems such as arrhythmia and bradycardia, blood pressure problems, eye problems, neural crest tumors, bowel problems (Hirsprungs Disease), temperature control problems and I am sure I left some things out. Noah has some of the eye issues, swallowing issues, had bradycardia as a baby and temperature control problems. We go annually to sleep studies to check ventilator settings. Also bronchoscopies are done annually (this is where they sedate him and scope the trach/throat area to check for granulomas, which is scar tissue). We also have home vent clinic several times a year, annual holter monitoring (heart monitor), and endless therapies.
Another name for CCHS, is Ondine's Curse. However, I am not very partial to this one and do not use it often. According to the myth, there was a water nymph who had an unfaithful mortal lover. He swore to her that "every waking breath would be a testimony of his love". When she found out he was cheating on her, she cursed him so that if he should fall asleep he would forget to breathe. Eventually he fell asleep and he stopped breathing. (Taken from Wikipedia).
Now, you may think that having a child with a trach and ventilator is difficult. You are so right. We have to be very careful and take the vent everywhere with us. There is a lot of equipment to maintain and tons of supplies to organize and store. Traveling is very challenging because we have to take our mini ICU with us (we call our van the traveling ambulance). It is a very hard way to live. But, do we see it as a curse? NO!!!!! We have a love/hate relationship with all of the equipment because without it, Noah would die. So we hate having to care for it, lug it around all of the time, worry about it failing, etc but we desperately need it.
We see Noah as our miracle. CCHS is extremely difficult to diagnosis. In fact, the NICU doctors had no idea what was wrong with him at first. They had only seen one case of CCHS the entire time they practiced medicine. Our pediatrition had only heard of it but never knew anyone to have it. It is a miracle to us that he was diagnosed so early so that we could begin the life saving treatment. Because of this, he has no cognitive problems and is extremely healthy.
So you see, Noah is not our curse at all. He is our miracle. He is extremely tough and resiliant because he has been through so much in his short life. He has taught us so much about ourselves and has changed our perspective on life. He is not our curse, he is our blessing. Our own personal little miracle.
Sunday, March 25, 2012
Why?
Why? That is a question that I get asked frequently and over half of the time I have no answer. "Why does God have teeth", "Why do butterflies taste with their feet instead of their mouths", "Why are people mean". These are just a few of the "why" questions that I have received for which I have no answers.
The one "why" that I can answer is "why did you start a blog?" For one reason, my husband keeps bugging me so I decided to try writing one. However, my main reason for writing this blog is to try to help other mothers/families who are going through some of the same things that we have and are currently experiencing. If I can help one mother who is in the NICU, one mother who has a child with a rare disease, one mother who is terrified of having a child on a trach and a ventilator, or one mother who is having trouble juggling "normal" life with a "special needs life" then I will be happy. My goal is to help raise awareness for my son's rare disease and to give people an insight into the daily struggles and triumphs of raising a family dealing with a rare diagnosis.
So, welcome to my blog and thanks for reading.
The one "why" that I can answer is "why did you start a blog?" For one reason, my husband keeps bugging me so I decided to try writing one. However, my main reason for writing this blog is to try to help other mothers/families who are going through some of the same things that we have and are currently experiencing. If I can help one mother who is in the NICU, one mother who has a child with a rare disease, one mother who is terrified of having a child on a trach and a ventilator, or one mother who is having trouble juggling "normal" life with a "special needs life" then I will be happy. My goal is to help raise awareness for my son's rare disease and to give people an insight into the daily struggles and triumphs of raising a family dealing with a rare diagnosis.
So, welcome to my blog and thanks for reading.
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