Wednesday, May 9, 2012


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.

Saturday, May 5, 2012


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.