Caping on

Today was our follow up appointment with ENT since we were discharged from the hospital last week.  During the course of the last week, I have been cleaning his wound site twice a day and applying a new dressing each time, as well as changing the packing every 1 1/2 to 2 days.  It is obvious that the wound is healing.  It is not nearly as deep as it was.  Each time I change the packing, I am putting less packing back in because that is all that will fit.  Also, the wound is not as wide.  The hole is slowly closing.  It truly is healing from the inside out. 

I anticipated seeing the doctor today and she would tell us that the wound is healing nicely and to just let it be.  But as my mother says, she always does opposite of what I think she is going to do.  I guess that is why she gets paid the big bucks.  She thinks it will be a good idea to take him back into the OR and put a few stitches in to close the hole.  We discussed this last week before leaving the hospital.  She was hesitant in doing so then, mainly because the tissue was infected.  She was afraid that because of the infected tissue, and because of how much John moves around throughout the day, the stitches may not hold and it may open up again.  Another reason she was hesitant is because of the size of the wound and the depth.  She wouldn't actually be able to close it all of the way because there would be too much space behind the stitches and that would increase the chance for further infection.

The reason she changed her mind today is because the tissue is not infected like it was.  It is healthier.  Also, because the wound has healed partially, she may be able to actually close the whole thing and it would be okay.  It would only be a surface closure.  She also is concerned with what the scar will look like if we continue to let it heal like it is.  She thinks she can clean it up a little and make it look a lot better if she closes it with sutures.

Of course, she wants to do it next week and of course the only day she is in surgery next week is Wednesday.  That means we will have to reschedule our trip to Austin to see the Rehab doctor.

It is frustrating that this is still an ongoing saga.  I had no idea it would turn into the drama it has.  But just like every other curve ball we have been thrown, we adjust to it and move forward.  I am really glad that we are getting this all done before school starts.  I'm REALLY glad I thought ahead and requested we do the initial surgery 2 weeks ago.  Initially we were going to wait until today to schedule the surgery and that would have put this happening after school started.  This would have all just been a mess trying to handle if he were in school.  I am really hoping this is the last hurdle, that the stitches will hold and there will be no more set backs.

As usual, John has been amazing.  He has been especially giggly the last couple of days, even though he has been to the doctor each of the last two days.  He's the only kid I know that enjoys going to the doctor and starts giggling the minute we pull into the parking garage. 

Keep Calm and Cape on!

Welcome to Holland...A different Perspective

If you are new to my blog and haven't been following from the beginning, I thought I would take you back and share my very first post and offer a different perspective.  I started this blog 4 1/2 years ago partially for therapeutic reasons and partly to share with others who may be going through some of the same things.  I thought maybe they could find comfort in some of my words.  So let's take a quick look at the very first post I ever wrote.


For a while now, I have thought about starting a blog.  I just never knew exactly what I had to write about.  I decided that being a mom of a son with special needs gives me lots to say.  I also find that sometimes I have things weighing on my heart that I don't share with anyone else.  This gives me a forum to share those thoughts and feelings instead of keeping them bottled up inside.  And maybe someone who is going through a similar situation will stumble upon this blog one day and find something that I have written to be of comfort to them. 

I'm sure you are wondering about the title I have chosen.  Let me explain where it came from.  A little over 5 years ago, shortly after my son was born, I received an email from a friend.  We were just coming to terms with the fact that our little boy wasn't exactly what we were expecting.  This email contained a story, told by Emily Perl Kingsley, a mother of a child with disabilities.  The story was titled "Welcome to Holland" and it perfectly described how I was feeling.  It goes like this:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

After reading this story 5 years ago, all I could focus on was landing in Holland instead of Italy.  That's how I was feeling.  I had dreamed for so long about having a baby.  I dreamed of holding him for the first time in the delivery room, and leaving the hospital with him in my arms.  I dreamed of all he would become and all of the things he would do.  I dreamed of hearing his first words and watching his first steps.  I dreamed of teaching him how to play baseball or how to throw a football.  And now, none of that was going to happen.

But now, 5 1/2 years later, I have learned to focus on the rest of the story.  I've gone out and bought new guide books and I've learned a new language and I have met some fabulous people who I otherwise would have never met.  I've learned to enjoy Holland.  And even though I still dream of going to Italy someday, I would not trade the time I've spent in Holland for anything.  It has shown me a strength I never knew I had and I have learned to do things I never thought I could do.  So Holland is where I am, and Holland is where I will stay.

It's been 10 years since we landed in Holland.  Holland has become home.  It's no longer a place we are just visiting.  We have learned to speak the language (medical lingo).  We have met lots of people and it turns out, while Holland can at times have harsh conditions, the rest of the time it's beautiful.  We have seen our boy grow up and make friends and be more excepted than we ever thought.  I have become more comfortable around other residents of Holland and I try to welcome others who are just landing here unexpectedly.  Today I came across a different perspective, one from a sibling of a child with special needs.  I thought I would share that with you.

When I was young, I heard the essay, “Welcome to Holland,” by Emily Perl Kingsley, which compares being a mother of a special needs child to planning a trip for Italy, only to find your plane has landed in Holland. Both have their beauty, but Holland was not what she had in mind.

I understood that this poem resonated with a lot of parents, but for some reason it never resonated with me. “Surely it should,” I would think. “After all, I’m a sibling of special needs kids, and that’s close to a parent, right?”

Wrong.

After weeks of mulling it over, I’ve finally realized why: I grew up in Holland.

As a younger sister of a brother with special needs and sister of 13 siblings, 11 of whom have special needs, I was an American born in Holland.

Although I always knew I was American, Holland was home. In a land where medical procedures roll off the tongue and auto-correct in your texts, I learned to speak the language of prescription medication. I learned to appreciate the celebrations, like the getting-off-medication parties and the happy tears when a 4-year-old with delays says your name. I learned the culture, where co-sleeping, oximeters, doctor’s appointments, wheelchairs, hearing aids and restricted diets are the norm.

I love Holland. It made me into the person I am today. It’s made me appreciative, compassionate, more gentle, more forgiving and more willing to serve. It’s made me more aware of the people around me, and most of all, it’s given me many friends who, too, live in Holland.

Here’s the problem: There’s a big world outside of Holland.

The world outside of Holland is a fast-paced race to the top, where test scores and high pay reign supreme. Where we always need to know who is the best and where the different, the odd and the outcast are looked down upon with pity or distain.

As I grew up, I thought there was a lot that I was missing from not being around “normal” people all the time. But as I grew up and ventured out of my little Holland, I realized something…

I don’t like life outside of Holland much.

I don’t like a world that can’t or won’t accept all people, regardless of their ability. I don’t like a world that thinks my siblings are a waste of resources or that intelligence is measured by a score on a standardized test. I don’t like a world that won’t stop to see the beauty of my siblings’ smile, their life and their joy.

As an adult, a lot of people come to me to ask about what having siblings with special needs has “done to me.” I won’t lie, it can be hard. It’s true you might have to share a room and might have to give up extra things. It’s hard sometimes to have to pick and choose activities and hard to have parents split between home and hospital. But the more I grow up and assimilated myself into the real world and the work force, I realize how blessed I have been to have been gifted these siblings. I believe God chose them and brought them to my family for a reason. They have taught me grace, peace, love, joy, sorrow, faith, and so much more. They have taught me to sacrifice myself for the needs of others, to consider others above myself, to celebrate small victories and to always show love.

This was posted on the Facebook page called The Mighty and was written by Cassie Ellsbury.  I thought about what she had to say and found her perspective a very interesting one.  For her, she has never known a world that didn't consist of doctors appointments and therapies.  The language spoken here is her native language.  She understands all of the medical jargon without needing anyone to translate for her.  And she's right, the outside world can lack compassion and understanding and it's difficult to understand why others don't see your loved one the way you do.  We don't have other children, but for those of you who do, I imagine they feel much the same way.

But as a parent, my perspective is the same as it was in the beginning.  The poem still resonates with me.  I still wonder what it would have been like to carry my baby out of the hospital in my arms when he was just a few days old instead of him leaving in an ambulance when he was 3 months old.  I wonder if he would enjoy playing sports as much as I did and if he would be a good athlete.  I wonder what he would be really into and what kinds of posters he would want on his bedroom wall.  Those are the things he is supposed to be doing at this age.  As long as I stay in our little cocoon, it's perfectly normal to me that he still wears a diaper and doesn't talk.  It's okay that he crawls and scoots around the house instead of walking.  But when I get around other kids his age and see the things they are doing, I am very acutely aware of just how far behind he is.  Typically developing 10 year olds are becoming independent little people, while my son is still completely dependent on me. 

We have made a normal life for ourselves here in Holland.  It may not be normal to others, but it's normal to us.  And it has it's upside too.  John thinks it's a party when he has to stay in the hospital.  I don't have the scared or crying child when we have to be there.  And when they start an IV or do things like pack a wound in his neck, he doesn't even flinch.  He has been stuck with needles so much in his life, that it doesn't scare him. 

And I rather enjoy the life we have made for ourselves here.  I have learned so much from it and I feel I have become a better person and much more compassionate person because of it.  I have learned that I can't always live within my comfort zone.  And when the conditions get a little harsh here, we have our moment of panic and "how are we going to do this" and then we just do.  We make a new normal and then we move along with life.  But as much as I love our life and we as much fun as we have here, I still find that it's nice to take a little vacation to Italy once in a while.  And, while it's nice to get away, I always find myself ready to return home to Holland.

It didn't go as planned

A lot has happened over the last week, since my last post. It's been kind of a wild week. What started out as a simple procedure, has turned into 3 nights in the hospital. Here's how it all happened. We went to the hospital on Wednesday as planned for John's trach closure surgery. The first sign that this was going to be a wild week should have been when the fire alarms went off WHILE HE WAS IN SURGERY. There was no actual fire, and it didn't affect the surgery, but everyone in the waiting room had to go and stand behind the fire doors until the all clear was given. It was kind of a crazy thing to happen while your child is in surgery. Surgery went well. Apparently it was more involved that we originally thought. I thought it was just a small procedure, but it was definitely a surgery. Because of that, he actually had to stay a night in the hospital. That is apparently normal with this surgery, but we just weren't completely aware of that ahead of time. So we were not prepared. But it wasn't a big deal. Tommy went home and got John and I what we needed and we stayed one night. The hard part was that we didn't get our own room. We got a bed in a pod, with 3 other beds. Two of those beds had patients so we did not have a restful night. Also, there was no bed for me, only a chair that didn't recline all the way. The only actual sleep I got that night was when I crawled in bed with John. I should have just done that all night. After the surgery, the doctor left a drain in his neck to drain off any excess fluid. Early Thursday morning, one of the residents came by and took the drain out and put a steri strip over the hole so that it would close on it's own. We came home like everything was normal. We just had to keep the incision site clean and dry over the next several days and eventually the steri strips would fall off on their own and it should all be healed. Monday, John started Super Place Camp. This is the same camp that he has attended in August for about 7 years. It is held at a different church each year, and I usually spend the morning at Starbucks while I wait to pick him up. I dropped him off Monday morning, then went to Starbucks. When I picked him up about 12:15, I immediately noticed that his neck around the surgery site was red and puffy. That concerned me that he probably had an infection. Then I noticed a little bit of leaking from the site. By the time I got him to the car, it was full on oozing. So I drove him straight to Texas Children's ER. We got into a room right away and it didn't take long to see a doctor. They called the ENT team to let them know we were there. The same resident who was in John's surgery the previous week and who had taken his drain out before we came home, came to see him. By then, some of the steri strips had come off when the doctor was trying to clean the area in order to get a look and you could see a small hole. So the decision was made that they would admit him, start him on IV antibiotics and they would pack the wound and let it heal itself from the inside. With an active infection, it's not a good idea to suture the hole closed because that would just make the infection worse. You want the excess fluid to drain. So we got a room, this time on a different floor and we had our own room. Yay!!! They started the IV antibiotics and we were planning to be discharged the next day. When the doctor came in the following morning to remove the old packing and put new packing in, I noticed while he was packing that the hole opened wider than it was. That really concerned me and honestly it was really gross to look at. John's ENT came by to see us later that morning and she decided to keep him one more night so he could get more IV antibiotics. So we settled in for another night. By that evening, the site just looked nasty and I was very concerned about our course of action and what it would mean for him starting school. The same doctor from the morning came back that evening to change the packing again and he told Tommy and I that we should not cover it with a dressing. I couldn't see him going anywhere with a gaping hole in his neck. The next day, our ENT came back to see us and gave us our options. Either, we could go home with oral antibiotics and the supplies to pack the wound ourselves at home and let it heal itself from the inside, or we could go to the OR and she would put a few stitches in the wound. She wouldn't close it completely, but she could make it smaller. But she was concerned that because the tissue there was infected, it wouldn't hold the stitches well and it may make the infection worse. So we chose to go home and take care of the wound at home. We have a follow up appointment with our ENT next Wednesday and she'll check to see if there is any progress in healing. If not, she would consider going ahead and doing the few stitches. In the mean time, we are cleaning it a couple of times a day and changing the packing every other day. And we are putting a dressing over it to keep any dirt and bacteria from getting in there. She told us if things got worse to call her and she would see him right away. She even gave us her cell phone number to call her on. She is a pretty amazing doctor. She has taken care of John for all of his 10 years and is always so great with him. So it turns out what actually happened is that the incision didn't open back up. The hole with the drain seems to never have closed all the way. When he got the infection, it started draining and the hole opened up wider. The hole is actually bigger than it was when he had his trach. It's just really weird. But through the entire process, John has been completely fine. He has never run a fever and he never even acted like he felt bad. He was his typically happy self, and was having a great time flirting with all of the pretty nurses. This kid is something else. Hopefully we are through the worst of it and he can finally start to heal. I think I will keep him close to me until school starts, just to be sure nothing crazy happens again. With the amount he moves around, there is some concern with how long it will take to heal completely. Thanks to everyone who called, texted, sent messages and most of all prayed for us. It's so tough being in the hospital with your child, but knowing we have so many supportive friends and family, makes it all a little easier. Hopefully now we can just enjoy what's left of our summer.