Finding a balance

 

We all need to find a balance in life. Whether it is the balance between our home and our work, ourselves and our family or in my case, my children.  There are three of them. There are two of us, my hubby and I. We are outnumbered.

When my hubby and I started talking about having a third child we laughed at the thought of there being more of them than there are of us. We discussed the problem of having one more child than we have hands, one more child than we even had bedrooms for, and yet....here we are, and we wouldn't have it any other way.

Is the jump from two to three that big?

Yes. Maybe not Evil Knievil jumps the grand canyon big, but big.

Just because there are more animals than keepers in our household doesn't make it a complete zoo.  But, add to the sheer number of small humans in my house, the fact that one of them has severe food allergies, and that throws a few more balls into the air to juggle.

The Squeaky Wheel
We have all heard the saying, "the squeaky wheel gets the oil." Meaning that if one of your children is screaming from the bathroom for toilet paper, one is hanging perilously from the top of the loft ladder and one is quietly painting themselves with nail polish, you hide in the bathroom until your husband gets home.  No really, you grab the kid from the ladder before you have to add a trip to the ER to your daily "to list" because a long wait on the pot or a little added sparkle to the floor won't undo your whole day.

So when your children outnumber you (or you and your husband) you play the squeaky wheel game.  Who needs me most? Who will live without me for the next 5 minutes?

For anyone with kids there are not too many times when their wheels don't need oiling. They need feeding, clothing, bathing, tutoring, disciplining, rescuing, answering, moderating, playing, loving, hugging, soothing, kissing, boosting, and most of the time that is before 8:00am.

When one of your children has additional needs as far as their health, they tend to get the most focus. That one kid whose wheel is constantly squeaking. Over the last year, that child has been my Monk. The hubs and I have had to learn so much about caring for a child with food allergies, eczema and asthma.  I will admit that there isn't many times of the day that some aspect of this doesn't weigh on my mind.

So where does that leave the other two?

Trust me that each of them offer up plenty of opportunities for oil, and lately their needs may have resulted from a lack of being the squeaky one. How do you balance? How do you ensure that each of them gets their fill of mommy time and knows that they are loved.  How do you choose which wheel to oil when one is breaking out into hives, one can't get the help needed for long running behavioral problems and the last is hardly ever squeaky but wants nothing more than to sit and cuddle with you for hours?

This is where I have found myself over the last weeks. And the answer is that you become the last on the list and dole out as much attention as you can spare in those short and few waking hours that we are given. You ignore the state of your house, maybe don't cook dinner for a few nights, and understand that everyone will live through a week (or two) of school with wrinkled uniforms (or shirts with no buttons. Yep, that happened.)

Enough To Go Around
When you begin to consider having more than one child, there is a question that we all ask ourselves. Will I love this next child as much as my first? It is horrible to admit but we all wonder somewhere in the far recesses of our brains. We love or children so much that spreading it amongst multiple kids just seems virtually impossible. We make it happen though, and some magical force Grinchifies our hearts to grow with the addition of each new family member.

While it becomes second nature to share and spread the love, there is one thing in our lives that we all need more of but can't seem to get...time. And that is where things get complicated. Taking the time to give each child what they need can take more than 24 hours each day, and that is before you go to work, make dinner, wash the dishes, clean the clothes.  You get me.

There is not enough time to go around to focus on  just one child to the extent to which we all would like, but I can only hope that sharing a mommy, and learning to help themselves on occasion (like making sure there is toilet paper in the bathroom before you go potty!) will help them each to become a bit more resilient in life.

I try to find a balance, and I have a feeling that I will be working the scales back and forth for the rest of my life. I have three beautiful children who each need me in one way or another, and I am thankful for being needed, being wanted and being loved by them. Even if it is for 27 hours a day.

And know that it is an exercise in futility to get them all to smile at the same time.

Perspective

Written May 19, 2014

The dictionary defines perspective as "a way of regarding situations, facts, etc, and judging their relative importance." 

Right now, today, I hate perspective. Because to have perspective on life, it many times means that some else is suffering far more that you. 

"That really puts things into perspective." The "that"? Someone else gets laid off from their job, is diagnosed with a terminal illness...loses a child.  So in the face of this tragedy we are able, somehow, to be thankful for our own lives. Those small problems that plague us, pail in comparison.

Why can't we gain perspective without someone else "trumping" our own problems. Why can't we see the importance of saying "I'm sorry" or "I love you" without a heavy heart. We all want to remember to hug our children everyday, to not get so upset with them, to forgive others when trivial differences arise, to never go to bed angry at our spouses, for who knows what tomorrow holds. Without perspective, sometimes we forget. 

Perspective is the great equalizer. It helps us to remember that we are all the same, and with the blink of an eye we could be facing the same loss. So maybe perspective isn't totally terrible, as long as you are on the right side of it.  Maybe it gives a bit more meaning to the lives of those who are sick or no longer with us if we translate one's suffering into love and thanks for friends, family and those who are on the other end of our own perspective. 

Today I have perspective on what is important, or better, unimportant in my life. I wish I didn't have this perspective, because maybe that would mean that she wouldn't be suffering her loss right now, that her sadness didn't outweigh all of ours. 

A prayer to God that He keep my family safe and healthy, and to Mary to hold in her arms those mothers, especially my friend, suffering for their children.

So have perspective. Hug your children. Call your mother. And I will close the computer so that I can go have lunch with my husband, which I always seem "to busy" to do.





 

The Label Strikes Back!

Read the label, read the label, read the label...and then read it again. When you have a kid with food allergies it just becomes second nature.  I find myself reading labels of things that I am not even planning to give to Monk just to see if it is viable option.  If a package of strawberries had a label, I'd read it.

Or would I?

Labels aren't just on food
Sitting next to my kids tub are about 5 bottles of shampoo and body wash. Some for the older kids and a couple for Monk. He has special shampoo for when his eczema flares up, regular tear free baby wash, and then a bottle of "natural" head to toe wash that has been there for months but rarely used.

Well, I used it, and seeing as most of my posts end in reaction, you can probably guess what happened next. Hives. All over. I pick up the bottle, flip it over, and right there is a list of sources for the natural ingredients. Among them, coconut and sunflower.
 

The Catch
Now my label reading will extend to shampoos, soaps, lotions and such, but there is a catch. The labeling laws for these items are not the same as they are for food. The FDA requires food manufacturers to list the top 8 allergens by their source name in ingredients lists (e.g. Whey as Milk, etc.), and more and more manufacturers are moving towards "Contains" and "Manufactured on" statements to help those suffering from food allergies.  Beauty products are not required to do the same.  The ingredients in the body wash that come from Monk's allergens are polygyceryl-10 laurate, cocoglycerides, sodium coco-sulfate, coco-glucoside and glyceryl oleate.  Try remembering those the next time you are at the store. Of course, since coconut and sunflower oil aren't included in the top 8, the source wouldn't be listed anyway, and it is only because this wash is touting its natural ingredients.

So here is the problem: the hair must be washed.  I mean, the child was labeled "Baby Elvis" at 3 months of age for a reason.

Lip curl and mic ready!

Almost every shampoo that I have come across in the past few weeks of researching this issue has coconut in some form or another. Scouring the internet to find a coconut free shampoo is not an easy feat. I posted the question on two different allergy forums because someone must have had this problem before, right? I got a few great suggestions for soap that is allergy friendly but shampoo is difficult. This blog, Allergic to Coconut? had a few answers including going shampoo free with apple cider vinegar and baking soda (pretend you didn't just gag from the thought of smelling your sweet vinegary baby).

Before I run out and spend $20 on 8oz of shampoo or soak him in vinegar I will consult my allergist to see if I am taking things to the extreme (it wouldn't be a first.) It may be that the sunflower alone or in combination with several sources of coconut in that particular shampoo was what caused his reaction. Either way, that bottle is going the way of the dodo, at lease in my house.

Little Miss Mommy

I am a proud mama this morning.  My daughter, at 4 years of age, already "gets it."

Each morning my older children's school holds assembly. The entire student body (PreK - 8th grade) along with parents and teachers join together to start the day with prayer and announcements.  It is a wonderful time for community and Monk and I stay for assembly daily. 

Now that Monk is a bit older and a bit more mobile, sitting quietly in my arms isn't high on his list of priorities.  He wants to interact with the children, and they want to interact with him. While other parents of young children might worry about the spreading of germs and viruses from our sweet little school-aged incubators, I worry about a contact food allergy reaction. (Monk has reacted through touch alone to milk, eggs and peanuts.)

Each morning at assembly, the little girls in Punkin's class swoon over Monk. What little girl doesn't love babies, right?  There have been a few times when I have had to asks that they don't touch Monk in case they ate one of his allergens for breakfast. Of course, most look confused. I mean, they are 4 and 5 years old. Why would their milk and cereal or scrambled eggs make any difference when just touching him?

This morning Monk squirmed out of my arms to go visit his sister, already sitting with her class and friends.  Of course this caused squeals of delight from the girls who were excited to see him.  I see Punkin talking to one friend in particular and then they both walked over to me. "Mommy, she didn't eat peanut butter or eggs for breakfast. Can she touch Monk?"

I cannot express how proud I was that my daughter knew enough to ask her friend what she had eaten for breakfast before allowing her to touch her brother.  Add to it that she checked with me.  I know that my kids hear me when I talk about Monk's allergies and what we must do to ensure that he stays safe, but for her to take on the role of advocate was heartwarming.

Now if I can only get them to listen so well when I ask them to clean their rooms.

Tale of Two Hospitals

Two weeks, two reactions, two hospitals, two completely different experiences, many lessons learned.

Exactly two weeks and five days after our very first hospital visit (discussed here) we found ourselves in an ambulance heading to the emergency room again.

What Did He Eat?

My next post was going to be a celebratory exclamation that we were getting to remove something from the list: white potatoes. Monk had been eating Van's waffles made with potato starch for some time so our allergist gave us the green light to try actual potatoes. 

I made a pot roast, which he has enjoyed on multiple occasions, and mashed potatoes. I was careful to cook the potatoes and separate out a portion for Monk before adding in any milk or butter. I mashed his with soy milk.  

One bite of each and he refused both. 

I try to never push food on him anymore as the guilt from a subsequent reaction just stinks. So instead I gave him a toddler pouch made of mango and coconut milk.  He had eaten it once before without instance and I was excited to have him "pass" coconut since coconut milk and oil are good baking substitutions for allergy kids. He inhaled it. 

About 15 minutes later, the symptoms began. Coughing was first. Hubby brought him in from outside to give him his asthma treatment, and before we had finished giving him two puffs of his inhaler I noticed one hive. Just one little seemingly insignificant hive. I stripped him down to check for others, and as hubby got a dose of Benadryl into him, there were a few more. No sooner was he dosed up and down to his diaper then he started to vomit.

Three organ systems engaged = Epi Pen. 

Difference #1: It was the first time that I did it. I administered the Epi Pen myself. No chickening out and letting a nurse or my dad do it. Honestly, stabbing a needle into my kid's leg wasn't the scary part anymore. 

After the Epi

Monk has been given an Epi Pen twice before and each time his symptoms all but disappeared.  

Difference #2: The vomiting didn't stop after the Epi, it got worse. 

Because he seemed to get momentarily worse after we administered the Epi Pen, we called 911 and waited for an ambulance to arrive. I wasn't going to risk driving him in the car with his reaction growing. 

Two ambulances, one fire truck and about 10 emergency responders later, my Monk had been checked over and was doing much better. Epi Pen administration calls for a follow up trip to the ER, even when symptoms are no longer present, since epinephrine is a fast acting but not long lasting drug. 

Difference #3: We followed our allergy action plan to the letter, calling for assistance and letting the medical team make the decisions.

Since the EMT charge physician didn't want us to drive to the hospital given Monk's history, we got an exciting ride in an ambulance. Mommy note: they strap YOU onto the gurney and then have you hold your child. 

We arrived at the hospital, the EMT checked us into the ER, and the waiting began. From here on out the differences were just too many to count.

The Waiting Game
I am the first to admit that I have never waited in an ER. Thankfully, until this night I have never had to.  We have all heard of the horror stories of people waiting hours on end just to be seen, but until you are the one waiting, it just doesn't register.

Having had such a different experience so recently, it made it that much harder, but there were a few things that I immediately thought were off.  A nurse did come listen to Monk with a stethoscope when we arrived and hooked the pulse ox to him to get a reading, but neither piece of information was shared with me. She walked away as quickly as she had come over to us. The EMT who checked us in was the one to come and tell us that they couldn't see us and that he would have to walk us to the waiting area.  He seemed irritated and rolled his eyes, signalling that maybe he didn't agree with that decision.

The ER staff had been told that Monk had thrown up his last dose of Benadryl and had only received two puff of his steroid inhaler (6 puffs were administered on previous occasions for breathing issues during anaphlyaxis.) No one asked if we needed any subsequent medications or if we had them on hand. For perspective purposes, following previous anaphylactic reactions, Monk was given does of Benadryl and Steroids regularly for 3-5 days following the initial reaction.

My father (the pediatrician) had luckily been at a meeting at the hospital that evening and met me in the ER waiting area.  We did not tell anyone that the child waiting was the grandchild of one of their own physicians. It didn't seem important, nor did we think that we should receive special treatment based on status instead of medical importance.

No one came to the waiting room to check Monk's respiration. No one came to hook up the pulse oximeter that was still wrapped around his toe. Nothing.

Experations
After two hours of nothing, my father went to find a nurse on duty to ask about our wait time. We were told that it would be a least and hour/hour and a half, if not more. The first thing to expire was my patience, and after sitting in the waiting room for 2+ hours at this point with a baby that had nothing on but a diaper due to a panic and rush to hurry and wait, I was exhausted.  Monk desperately tried to escape his grandfather and me to run around on the floor of the ER waiting room with 2 dozen other sick children, but we held tight thinking, "We have to be called next" and "Didn't we get here before them?"

I waited a bit longer and then went to find someone myself to answer my questions as to why we continued to sit, unmonitored, in their waiting area. The charge nurse on duty came out to speak with me. Even though Monk was seeminly fine and recovered from his reaction, I knew that there was always a possibility of a relapse, similar to the one he had at the hospital just a few weeks prior.  I quickly told him my concern of why we were still waiting, and that I thought it was strange to have been sent to the waiting room immediately here when the same problem got us immediately seen in another hospital. He asked if he could look at Monk's file and get back to me and off he went.

When he returned I assumed he had read the same medical history that caused the EMT charge physician to decline our request for self transport. I assumed that he knew that my son had been admitted or overnight observation to this same hospital's alternate campus less than three weeks prior. That he had finally realized that my child hadn't been given medication to keep another reaction from happening.

What I did learn was that he thought I had done everything right and that he didn't need anything further, actually saying "you did everything we would have done."  So I started asking my own questions. I asked if their monitoring protocol for anaphylaxis was 4 hours. Yes. Since my child's reaction had been more than 3 hours prior and we still had at minimum of a hour to wait, would that mean that his monitoring time will have been expired by the time we were seen?  Yes. What would happen when we finally were seen since our monitoring time had expired? We would likely be sent home.

So why was I sitting there waiting.

And when he commented that I should feel lucky since the night before was an 8 hour average wait time, not only was my patience expired, but also was any semblance of a calm and rational mother. My mind quickly flashed to scenes of me sitting in that waiting room with my child well into the night and then getting called back to have someone listen with a stethoscope, shrug their shoulders, and send us on our way (likely with a nice fat hospital bill too.) I juggled this with the fact that it was a secondary reaction was a possibility and the hospital staff seemed to consider that the waiting area was within their four walls and thus "under their care?"

I opted, with the advise of my dad, to leave the hospital, now close to 4 hours after his reaction, and to medicate and monitor him myself.  With the largest, most espresso infused coffee that Starbucks sells in hand, we got back home around 11:00pm. I stayed up for a good part of the night with my sweet Monk asleep right next to me so that I could ensure that he was okay.

The next day started the process of reviewing any missteps in both my and the hospitals actions so that we didn't have to go through that again and neither did another allergy family. Calls were placed to the Family Advocacy group, heads of the ER, etc. We now know that protocol wasn't followed. He should have been hooked up for continual monitoring immediately. He should have received additional doses of medication to stave off a subsequent reaction. He shouldn't have been sent to the waiting area. 

Lessons Learned
 
Here are a few of the lessons that I have learned.

1. Find out the protocol for the ERs in your area. Knowing what their protocol was could have saved me hours of waiting there and hours of sleeplessness that night.

2. Ask your physician or allergist if they can write a note to flag your child's file.  Our allergist added a note to Monk's file alerting this to the severity of his allergies, highlighting his medical history, and giving instructions for specific care when and if we end up in an ER again.

3. Be vocal. Ask questions. You are your child's voice in so many ways, so be their advocate. If your gut is telling you that something isn't right, go with it.

4. Don't leave the hospital. I know, I know. This is exactly what I did, but in hindsight, if anything had happened to my child, I would have regretted it forever.  It would have been better to continue fighting to have my son seen. 

5. If you have connections, use them.  My father never told anyone who he was and neither did I.  At that time, and still today, we both felt that their care for Monk should have been based on his need, not who we know.  I would hate to think of a family in our situation with no connections, knowing no one and sitting for hours, but if it helps your child to get the care that you know they need, play that card.

This experience, unlike the last, taught us that even amongst the medical community, there is still quite a bit of education and information that needs to be shared. While it has also left me with a layer of doubt, questioning as to whether or not I Epi, whether or not we go to the hospital, I hope that in time that part of the experience will fade. One thing that I no longer doubt, however, is that both our first and second ER visits have made me more educated, stronger and more empowered to do what I need to do for my child.