I hate asthma!

I'm woken from a sound sleep by that now familiar cough.  It's that tight, bronchial, asthma cough.  He's made his way downstairs to my room and is standing beside my bed waiting for me to help him.  As I begin to pull on warm clothes, he starts to whimper and the coughs are coming closer together.  I quickly get out the emergency kit that I keep behind the couch for moments like this.  Okay, calm down.  Pull out the nebulizer and plug it in.  Check the air tubing for bends, kinks, or moisture.  He's starting to cry.  Crying is the worse thing he can do right now.  It makes him cough more, produces more mucus, and makes me feel more panicked inside.  Making soothing noises and telling him to breathe slowly and stop crying, I pull out a new pack of Albuterol vials and tear one off.  Attach the breathing chamber, open the Albuterol vial, and squirt in the liquid.  Ready.  Pull him onto my lap.  One last wipe of the eyes and nose.  Turn on the machine and hope it does the job.  He's so panicked at this point that he's actually trying to fight me giving him the treatment.  Stay calm.  Hold his arms out of the way of the steam and medicine.  Make soothing sounds.  Wait for it to start to work. 

Slowly, the coughing begins to decrease.  Gradually, our heart rates begin to slow.  Eventually, as the steam begins to lessen, his head starts to nod against me as he gives into exhaustion.  There's very little coughing now.  It feels like it took an hour but it was actually less than fifteen minutes from beginning to end.  I turn off the machine; pick him up; and carry him back up to bed.  While tucking him in, I coach him on our now familiar mantra.  "Sleep on your side, not your back.  If you start coughing, come get me.  Try to sleep for a little bit."  Exhausted, I head back to bed.  I know we'll be doing this again in three hours.  I HATE asthma.

There is something very isolating about being awake with a sick child in the middle of the night.  We live in a time with phones and Internet, yet being up with a child who can't breathe during those darkest hours makes you feel very alone.  The situation always seems more intense, more foreboding at night.  My husband can be sleeping in the next room as I administer the treatments but it stills feels scary and overwhelmingly lonely.  What if the treatment doesn't work this time?  What if he can't make it the four hours until his next treatment can be administered? 

During one of his prolonged asthma flairs, when we have been doing breathing treatments every four hours for days, I resort to keeping notes in a notebook.  Exhaustion keeps my mind from functioning properly and the days and nights begin to blend into one another.  I have to write down what meds he received; what dosage he received; and what time he received it and can have it again.

I have had to become an expert on my child's condition.  What are his typical symptoms?  What meds and at what dosage works best for his symptoms?  When should the meds or treatments be administered?  At what stage do I break down and call the doctor?  Which doctor do I contact, his primary or his pulmonologist?  I've had to learn to be his advocate and speak up for what I want for him.

When we came home from the hospital with my youngest child, I knew something wasn't right.  Newborns typically have sneezing, wheezing, coughing, and snorting.  They are adjusting from a liquid environment inside mom, to a dry environment outside of mom.  My youngest didn't stop exhibiting those symptoms.  I would lie awake at night and listen to him breathe, knowing something wasn't right.  At two weeks of age, after he stopped nursing, I took him into the doctor.  He was diagnosed with his first ear infection and "reactive airway disease".  Infants cannot be diagnosed with asthma because it can't be confirmed or ruled out at this age.  Instead, they are given the diagnosis of reactive airway disease until they outgrow the phase or until they are old enough to have more formal tests conducted. 

Needless to say, my youngest has not outgrown the phase and has been diagnosed as a chronic asthmatic.  When he was an infant, he was on preventative oral steroids to reduce the inflammation of his airways and reduce the mucus production of his airways.  They caused him to retain fluid and "puff up".  He looked like a BIG Gerber baby.  (I took his picture and put it on the side of food items as presents for people at Christmas that year - my weird sense of humor)  He weighed twenty-seven pounds at nine months of age.  Unfortunately, the extra size did not help his gross motor and fine motor delays.  They only contributed to them.  At five months of age, I questioned if there was something different we could do for him.  They then switched him from the oral albuterol and oral steroid to an inhaled Albuterol and an inhaled steroid.  Pulmicort is an amazing drug.  It did wonders for him.  It helped to reduce the frequency of his illnesses and allowed him to begin to lose some of the fluid weight that he had packed on. 

Three sets of ear tubes, helped reduce the number of asthma flairs that we experienced.  An ear infection would set off a sinus infection, which would set off an asthma flair that could take days or weeks to end.  We also had to learn to advocate what we needed in this area as well.  Requesting a referral to the ear, nose and throat specialist.  Keeping track of how many ear infections he had had in a specific time span.  (Twelve ear infections in six months) What meds had worked and not worked.  (No to Amoxicillin and Zithromax, yes to Cefprozil and Bactrim)  Requesting a longer time span of meds rather than a shorter one.  For example, a five day Zithromax dose was not adequate in time or dosage to completely cure a sinus/respiratory infection.  Symptoms would abate but not cure and in a week to ten days, he was sick again with the same symptoms.  We had to learn to tell our primary, "No.  That med doesn't work for him.  If you use that med, we need it for twenty-one days, not ten days." or "No.  That med causes diarrhea and stomach discomfort.  Please use Cefprozil instead."  Our pulmonary doctor got to the point where I could call him, describe symptoms and he knew what I was working with.  He went so far as to give me a standing order of Bactrim to keep on hand.  He knew I was only going to give it to him as a last resort when I had utilized all my other options. That is the benefit of educating yourself and learning to advocate for your child. 

Trial and error and our pulmonoligist's advise has helped us develop a number of preventative and early stage treatment options that we routinely utilize.  During the winter months, our hands are raw from all the hand washing we do.  As stated earlier, we use preventative meds like the inhaled steroids.  We also switched him from Allegra to Singulair.  If symptoms begin to emerge, we elevate the head end of his bed on wooden blocks.  We start to run a humidifier in his room at night and on the first floor during the day.  He gets two squirts of saline spray up each nostril in the morning and at night.  When serious symptoms start, we increase the saline to every hour or two.  During times of illness, his steroid dosage is doubled.  Tussin is used to liquefy any sinus drainage (The step he is most resistant to!).  As a last resort, Albuterol treatments are started and if progress is not made, an antibiotic is requested.  These steps have become part of our normal existence. During especially bad winters or seasons, I start taking notes to share with his pulmonary doctor in case we need to "tweak" his meds or dosages.

As he has grown, his immune system has strengthened.  We are able to prevent or head off most illness in their early stages.  His asthma flairs have, for the most part, reduced in frequency and intensity.  We have learned to advocate for our child and his needs.  With that said, I stilll HATE asthma!  I pray that one day he completely outgrows it.  Or grows up, moves out, and has to manage it on his own.  (small smile inside) 

Tantrums

"Here we go again", I think with a sigh.  Over-stimulated, over-tired, and just plain frustrated, my youngest child has thrown himself on the floor and begun to throw a full blown temper tantrum.  I know what has set it off.  Having gone through this many times before, I know how this is going to progress and what is required to get it resolved.  Saying a quick prayer for patience, I get to work getting him calm and back in control of himself.

Before I go any further, I need to start with a short disclaimer.  My children are many things.  They are hyper.  Very active.  Creative and full of energy.  Harnessed in the right way, it is wonderful.  Without an appropriate outlet... exhausting.  They are social.  Everyone is a potential friend and they expect others to respond in the same way.  They are intelligent and resourceful.  What they are not, is purposefully rude or disrespectful, nasty or vindictive.  They have rules and boundaries.  We live with very specific routines.  These routines are sometimes the only thing that gets us through a day, as my youngest is a "rigid learner".  So as I tell you about my youngest child's tantrums, view them through this perspective, and not the viewpoint that he is spoiled or undisciplined. 

Around the age of three, my youngest child started showing bursts of real cognitive development.  It was around this time period that we started to realize that we were working with a very smart guy trapped in a body that wouldn't let him communicate effectively.  He had begun to make some progress in his speech and communication skills but they still lagged significantly behind his cognitive and social skills.  It was around this same time period that he started throwing temper tantrums.  These tantrums were, and still are, a direct response to his frustration and belief that he "isn't being heard".

His tantrums always occur when he is either over-stimulated, over-tired, or both.  By nature, he is a happy loving child with a ready smile and a tendency to tease.  When he is tired or too wound up, he loses the ability to listen or rationally hear what he is being told.  Once he hears something that upsets him, he fixates on that and "shuts down".  He throws himself to the floor, yelling loudly.  Often he will begin to repetitively repeat the same phrase over and over.  For example, "No bedtime.  No bedtime."  over and over.  You can attempt to explain that you only wanted him to go get a bath to be ready for bedtime.  It isn't really bedtime yet.  But he is beyond hearing you.  If he has gone into a full blown tantrum, his eyes become glassy.  He starts sweating and writhing around.  He screams and growls.   There have been occasions when he hit his head on the floor and never even realized it.  It is awful and exhausting.

When he was four, the tantrums were happening at least once a week.  They were almost always severe and usually right before bedtime, when he was exhausted.  I would carry him up to bed and hold him as he screamed these guttural screams or growled with frustration.  All I could do was hold him and silently cry and wait for the tantrum to end.  Talking didn't help.  It only prolonged the process.  Singing or telling him you loved him further enraged him and made him angrier.  The only thing that helped was silently holding him, to keep him from hurting himself, and letting him wear himself out.  When it was all over, we would quietly talk about what had happened.  We would talk about what we could have done differently.  Skills or alternatives would be problem solved and rehearsed.  Eventually he would need to "go fix the problem".  That required apologizing to whoever he had upset or argued with, and trying to resolve the situation with that individual. 

There are very specific things that I have learned work to help prevent these tantrums or to help him get back into control. These were learned through trial and error.  The most important is not letting him get worked up or frustrated to the point where he can't pull himself back.  This is hardest to accomplish when other people are involved.  They don't always understand the consequences of keeping his behavior and his environment under control.  Another important factor is watching for his signs of tiredness.  When he is very tired, my youngest child gets loud and hyper.  The more tired he is, the less in control of his volume, his movements, and his impulsiveness he becomes.  When he begins to show these signs, it is time to get him to bed or get him somewhere quiet to rest and "decompress".  A final important step is when he is frustrated with himself, or a situation, he needs to be coached to slow down, take a deep breath, and express himself clearly.  Diligence with these preventative measures has significantly reduced the number and severity of his tantrums. 

His tantrums have had an effect on the whole family.  My oldest child had to learn to take himself somewhere else and take care of himself until the situation was resolved.  Fortunately, he is old enough and mature enough to do this.  That doesn't mean it isn't upsetting to hear your brother that frustrated.  My husband initially had a very hard time dealing with the tantrums.  He felt he should have been able to handle them better.  My son has a tendency to respond better to me than him in this instances.  Part of the problem is personality.  They are natured too much alike.  Part of the problem is training and experience.  I have worked in corrections since 1998 and have had lots of training and experience in working with escalated youth.  It just became easier for me to deal with it myself.  I began to resent my husband's lack of involvement, while lamenting my inability to help my son.  We began to function as pairs and individuals instead of a family.  A very unhealthy dynamic.  Fortunately, we came to recognize this dysfunction and worked to resolve it.  Our family unit has gained strength through our adversity. 

Having a son like ours, has also taught me to be less judgemental of other parents.  I'm not living their life.  I don't know what their circumstances are.  Therefore, it would be remiss of me to begin to judge them as parents based on the behavior of their children.  Appearances can be extremely deceiving. 

Time, increased communication skills, diligent preventative measures, and working as a family has decreased our son's tantrums.  He has fewer and fewer.  The severity of those tantrums has dramatically improved.  It has been months since he has had a full blown tantrum.  Our teamwork and communication as a family until has improved significantly.  We continue to work on making time for each other and recognizing the efforts that each of us put forth for the family.  It's not perfect, but it sure is good.

Thank you Lord for the love of family.  Please continue to give us patience and insight into our motives and our motivations.  May we always do what is best for one another.  As the Christmas holiday quickly approaches, I am very grateful for these three men and look forward to another year of learning and growing together.

Trying to Find the Balance

"Bye Mom" he yells as he runs across the road to the bus.  I can't help but chuckle even as I sigh and feel that familiar tug in my heart.  It is so difficult to find the balance between healthy independence and required diligent supervision.   Often it feels like walking on a tight rope.

My oldest son got to play hookey from school on Friday to go deer hunting with his father.  As a result, my youngest son would be getting on the bus by himself for the first time.  For most kids this wouldn't be such a big deal.  But as I have discussed previously, my youngest child lacks an awareness of danger and its consequences.  Because of this, I was a little concerned with how this experience would unfold.

Friday morning, he and I got up and prepared for school and work as we always do.  When it came time to go out to the bus, he thought he was big stuff because he got to sit up front in the car without his brother.  Once we were parked at the end of the driveway and waiting for the bus, I talked to him about what I wanted him to do when the bus pulled up.  Usually when the bus pulls up, his brother holds onto his backpack to hold him back because he becomes so excited to get on the bus and start his day that he starts running in place in anticipation of boarding the bus and going to sit with "his girls".  On this day, his brother wouldn't be there to hold him back.  I could have gotten out and waited with him but I saw this as an opportunity to encourage his independence.  He and I discussed why he needed to wait until Mommy said "go" before crossing the street to board the bus.  We talked about what he needed to do to wait and stay safe until the bus was completely stopped. 

When the bus pulled up, he fumbled around as he always does while trying to exit the car.  I coached him verbally on what I wanted him to do.  As always, he stood there next to the car, excited and running in place.  But today,instead of being held back by his brother, he touched the car and held onto the cardoor until I told him "go!".  When I told him to go, he ran across the road, soooo excited because he was getting on the bus by himself.  I laughed out loud at his enthusiasm.  Inside, I also felt a small pang of regret.  My baby had reached another milestone.  What a beautifully sad moment.

There are so many moments like this with my youngest child.  Balancing our need to keep him safe with our need to encourage his independence.  We want him to run and play with his friends at school.  Yet we shake our heads in frustration, when he comes home from school in different clothes because he fell on the playground and got soaking wet.  We want him to be social and learn how to interact with others outside his normal "circle".  Yet we hesitate for fear he will be rejected or ostrasized by others who see him as different.  We want him to get on the bus by himself afterschool without an aide or teacher prompting him.  Yet we know true fear when his brother tells us he almost missed the bus because he was daydreaming and not paying attention. 

When you have a child with mild developmental issues like our son, he is often mistaken for "normal".  There are also too many moments when he is seen as different.  He isn't one, but he isn't the other either.  He's somewhere in between.  Therein lies the frustration.  Therein lies the worry and concern.  Therein lies the need for balance.  Help us Lord to encourage our son's independence while keeping him safe from harm, be it physical or emotional.  Help us to find the balance.

It Takes A Village

Hillary Clinton says it takes a village to raise a child.  I'm not a big fan of hers but in this case, I have to agree.  My family belongs to a couple significant "villages" without which, we would not have made it through the last couple of years.  As members of a family based fire company, an active church family, and a loving circle of family and friends, we have had the support of amazing, self-less individuals.

During the worst times in our lives, our family has had the loving support of an amazing church family.  The Watsontown Baptist Church has a very active prayer support system.  When the prayer chain is activated, you can be sure that people are faithfully, diligently, and lovingly praying for you.  I credit their prayers with healing and restoring countless people, my family included.  There have been times in our life, especially with my youngest son and his developmental/health issues, when I saw no way out.  It was as bad as it could be.  But turning those needs and concerns over to the hands of these faithful believers has resulted in answers to unanswerable moments again and again.  One woman in our church who is on a limited, fixed income, convinced her co-workers to donate money to us for our trip to the Children's Hospital of Philadelphia to help cover transportation costs.  No one asked her for this.  She did it out of love and concern for our family.  I will never forget her love and generosity.  Those who do not believe would not understand.  For them, I feel sorrow.  To be given answers and support, when before there was none, is unlike anything else.  It is only possible through God and his believers.  In that, I do believe.

We have also been fortunate to be members of a large and very supportive family network.  Both sets of grandparents have been more than willing to take our children for an evening or a weekend when we felt like we were burning our candles at both ends.  My parents who have no experience with asthma or health issues have learned how to give breathing treatments and administer meds.  This is definitely outside their comfort zone as my siblings and I were all fairly healthy kids.  Besides lending a listening ear or wise advise, my in-laws have transported our youngest son to therapy so that we wouldn't have to take more time off work.  They have watched our children when they were sick or school was cancelled, sometimes with very short notice.  My husband's great-aunt, a woman in her seventies, took on the task of taking my very hyper impulsive five year-old to therapy after my father-in-law had his stroke.  No questions asked.  When asked, she said yes.  No problem.   My aunt and her husband who work at John Hopkins have acted as amazing information sources.  They have prayed and worried for us.  Those without a large family network might have found it all overwhelming or even smothering.  Without them, we would not have survived the last five years.

Our neighbors are like family.  They love our children like their own.  If they are outside, it is like an episode of "Dennis the Menace".  The boys see them out and take off on a run to go see them.  Both sets of neighbors are amazing.  They never seem irritated or bothered, just happy to see them and share their company.  If we need a babysitter or someone to get the boys off the bus, they are more than willing to lend a hand.  What wonderful, amazing people. 

We are also fortunate enough to be members of the most supportive, family based volunteer fire company that I have ever had the good fortune to come across.  The members of this fire company love and support each other like a family.  When someone is in trouble, the others rally around with whatever is needed.  Our time at the fire company is some of the rare times when I can let my guard down in regard to watching my youngest child.  When we are there, I know that someone else is watching him in a responsible and caring manner.  They are putting him to work mopping floors, or carrying supplies, or watering flowers.  At the fire hall, he feels like a big boy and no one tells him no he can't do it. 

Two of the daughters of another family from our fire company ride the bus with my two boys.  They are older than my sons by several years.  Without being asked, they took it upon themselves to help keep an eye on my youngest son on the bus.  It has been a God send.  My youngest would not listen to his brother during their half hour/forty-five minute bus ride.  Those two girls took it upon themselves to convince my youngest to sit with one or the other of them because they knew he would listen better to them.  They brought notebooks and markers to entertain him and keep him occupied during the long bus ride.  Candy and other treats have been provided as a reward for having a good trip to/from school.  Other kids on the bus has been encouraged to help get him on the bus since his brother is attending the middle school, while my youngest has just started elementary.  It has truly been a community effort.  These two girls will never know the peace of mind they have provided for me.  I can never thank them enough for the loving support they have provided my son and my family. 

Most of the love and support we have received from others has come without our having asked for it.  My husband and I are very proud people who don't like to ask favors of others.  Time and again, others have helped out, lent a hand, or came through when they were needed.  To those in our "villages", thank you.  We love you.  You will always be in our prayers.