Does the doctor always know best?

     I had a rather frustrating experience the past couple of days. Yesterday afternoon we took Teegan to his pediatrician because he had some green discharge around the trach site. I assumed it was infection, even though it was a rather bright green. The doctor thought it might have been bile, it was quite a technicolor green. For those who may not know, bile is stomach acid, so finding it around the trach site is rather odd. She suggested calling pulmonology and GI. By the time we got home it was 5 o'clock so I called this morning. The pulmonology nurse was quite surprised and suggested I call ENT. ENT was surprised as well, but knew that the office didn't have the diagnostic tools for this type of problem. She suggested I call GI (which was already on my to-do list) and take him to the ER if I see it again. Mind you, neither one of those nurses or doctors questioned the presence of bile on the trach site, even though it is an uncommon occurence. Now we come to the frustrating part of my story...GI. I left a message, since they never bother to answer the phone around there. The nurse called back, I gave her the same information that I left in the message, then said she would have to call me back. When she called back she said the doctor said it was likely infection and not a GI problem. Really? Over the phone, without ever seeing the discharge, even with another doctor suggesting it may be bile. A pediatrician who sees infection every day. A pediatrician who has seen my child more times in a month than the GI doctor has seen him in his entire life. Every other doctor of Teegan's has at some point asked my opinion. "Is this normal for him?" "Do you feel he needs an increase in meds?" His pulmonologist once asked me if his breathing was ok. His neurologist has told me that she has complete faith in my deciding when he needs a certain anti-seizure medication. His pediatrician said nobody knows if something is wrong better than I do. His ENT has asked me if I felt he needed to be hospitalized. This GI doctor...I felt completely dismissed by him. I'm smart, I research EVERYTHING, and I'm very pro-active about Teegan's care. I have to be. Nobody else is going to care as much about this patient as I do. Would you care to hear the absolute best part of today's debacle? The way Teegan's insurance is, we have to stay with this GI clinic. I can't even find a doctor that respects what I say as much as his other specialists do. Perhaps I will go back to school and get my nursing license. Maybe then he will listen to me. In the meantime, if I see this particular shade of green again we'll be headed straight to the emergency room. Hopefully he'll take an entire department full of doctors and nurses seriously.

Welcome Back

  Wow. Almost a year since my last post. Boy did I let life run away with me. I've been struggling again, emotionally. I realized how much this blog actually helped me. I have no title, no subject, just my thoughts and my computer. I don't want to jump right in to my deepest, darkest struggles right now. Perhaps a light and fluffy update on my Teegan, since it's been so long.
   He's doing well, relatively speaking. Bronchitis, a cold here and there, but nothing serious. GI is great, seizures are semi under control. His trach is another story. The ENT noticed some granulation tissue in his trachea, so she ordered a shorter one hoping that the tissue would go away if the irritation went away. So after two months of waiting we got the custom trach and made the switch. Well, no luck. The tissue is still there, partially blocking his airway. The next course of action is to get a longer trach, one that bypasses the granulation tissue altogether. That's where we stand now. Waiting an agonizingly long time for another custom trach, all the while Teegan's breathing difficulties are increasing. More and more often I have to give him breathing treatments and he's starting to have seizures again. I fully believe that difficulty breathing triggers his seizures. I just hope and pray that we get that trach before he has to be hospitalized. Hospitalizations are so draining and I don't feel like I could handle one right now.
   Even with all the difficulties, I know we're blessed. It's hard, but it could be so much harder. We have some nursing help now and that makes the load a little lighter. I know my life will never be "normal" but it can be normal for us. We have established routines, and while they may be boring, they help me retain my sanity. My friends, my family, my friends who are like family, they are the lights in the darkness. As long as I stay close to them, I'll never get lost. Would you look at that...I guess I turned an update post into catharsis after all. :)
 

The Green Eyed Monster

Wow. Nearly nine months since my last post. I'm not sure why I took such a long break, or what brought me back. I've had an up and down day, a bit of struggle with my feelings. Out of nowhere came the compulsion to read my last blog. It was exactly what I needed. I was starting the decline into burnout and I missed the first couple signs. Reading my own words brought me back. It also reminded me of why I started this in the first place. So I'm back. To help the reader, and to help myself. Complete honesty folks, this process is cathartic for me.

When I first started typing, I wasn't sure what I was going to say. I just knew something needed to be told. As the words of the first paragraph started flowing, I realized what I needed today's subject to be. Jealousy. Such an ugly word. Brings up feelings of inadequacy and guilt. But we're "no holds barred" here. No subject is taboo. The fact is, it exists, so let's air it out.

I'm jealous. I'm jealous of my friends and family that have healthy babies. Does that me a terrible person? I don't think so. I don't wish them harm. I don't hope that something awful befalls them. In fact, I love watching their kids grow and thrive. But there is a small, hidden part of me that aches to see that development mirrored in my own child. There's a part of me that weeps when I hear a two year old little boy say "mama". It reminds me that I may never hear that from Teegan, and that is hard.
But I think what I'm feeling is totally normal. This journey we're on is full of peaks and valleys, and it's just one of the valleys.

What else am I jealous of, you ask? Ok, so maybe you didn't ask, but I'm going to tell you anyway. I'm jealous of my friends and family that get to just relax. Be it a girl's night out, retail therapy (as I like to call it) or just vegging in front of the tv, I'm so, so jealous. That just doesn't exist for me. There's never a moment where I'm not "on". If I'm watching a show, I've still got one eye on Teegan, if I'm reading a book, I've got one eye on Teegan, even in my sleep, a complete state of disconnect doesn't happen. I have become an incredibly light sleeper because Teegan may need me. I'm up several times a night with monitor alarms or suctioning. His condition requires a constant state of awareness. I realized just today how fully it consumes me. Today was the first playoff game for my husband's favorite football team. The more I watched him completely intent on nothing but that game, the more irritated I became. I thought "it's so unfair that I can't do that. I can't completely immerse myself in anything." I felt a bit irrational after a while. I'm proud to say I pulled myself together. I only behaved like a sullen teenager for a half hour or so. I reminded myself that he got up this morning, unhooked Teegan from all his machines, and took him out in the living room so I could get a bit of uninterrupted sleep. He does try to assist me in preserving my sanity.

So, as I come to a close, let me just say to my family and friends, I love you. I love your kids. I love seeing the pictures, reading the updates, hearing about the milestones. I don't begrudge you your health and happiness at all. I acknowledge without embracing my darker feelings of jealousy. They're here, they're normal and I will not allow them to make me feel guilty. Nor will I allow them to make you feel guilty. Tell me about your baby's first step, tell me about the fun date night you had without the kiddos. I may not be able to enjoy the same things you do, but I can tailor my life to give me little moments. And I've learned to appreciate those moments more. Going to the grocery store has become a wondrous adventure, as opposed to a chore that must be tolerated.

And if you are a stranger who is making the same trip I am, those dark feelings, anger, jealousy, pain and guilt, they're normal. They're ok. Just don't let them consume you. Don't let them be all that you feel. There's joy in this journey too. Hold on to that. You will see the most amazing things, your child's development and milestones will be tremendous achievements. The harder they are to reach, the sweeter it is when they happen. Relish those moments, that joy outshines everything else!

When the train derails....

I haven't blogged in a while. I kind of disconnected for a bit because I was feeling overwhelmed. I needed to step back and recharge. Now that I'm "recovered" I figured it would be a good subject for the next blog.

When you have a special needs baby the information starts pouring in. One of the things you hear over and over is "make sure you don't get overwhelmed". If you're anything like me you realize how important their advice is but you don't really know how to put it into practice. Hopefully my experience can help.

I think, unfortunately, we have to burn out at least once. I didn't learn where my breaking point was until I was already there. Now I know better. But the first time it's like watching a train wreck. By the time I saw it coming it was too late to stop it. Now I recognize the signs. Next time I start approaching burn out status I can head it off. Everybody is different and you'll have to pay attention to your own personal cues and triggers. I don't want to share my own cues for fear that you'll focus on those and miss your own.

I will share the things that I've found to help keep it from happening though. Things that can also help pull you out of that place. You have to evaluate all the advice you get and see what works for your family. For me I learned that I need to get outside. Teegan is non-ambulatory. He's wheelchair bound and completely dependent on me for his mobility. That can make going places quite difficult. But I can't let that keep us inside. He has a wheelchair and also a feeder seat with wheels. So we can go for short walks around the neighborhood. With his respiratory problems I don't like to keep him outside too long. Especially during pollen season. But I can also put him in his feeder seat and roll him over to the sliding glass door. That way I can spend some time in the backyard without negatively affecting him. I tend my roses and I'm planting a small herb garden. Sunshine helps the body produce Vitamin D and can also help alleviate the symptoms of depression. Just make sure you remember your sunscreen!

If you are lucky enough to have insurance that covers in home nursing, use it! We had a nurse for about 3 months and it was wonderful. Unfortunately the state I live in cut pediatric nursing out of the budget. Even if you are your child's primary provider use the nurse for respite care. Even if you don't go anywhere, just letting somebody else worry about your child's care for a day can be a huge help. Sometimes I was glad just to be able to do the housework with out having to keep checking on Teegan.

Even if you don't have nursing you have to make a way to have some time to yourself. Teegan is what's called total care. He has a trach and he still has trouble breathing sometimes. He requires constant supervision. I wheel him around the house with me. Whatever room of the house I'm in, he's right there with me. So making time for myself is quite a challenge. I just didn't do it for a long time. I thought "I'm not a high maintenance person, I don't need much. I'll be fine." Well, I wasn't. I've come to realize that's just not a healthy way to live. I take small moments here and there, and they add up. I enjoy reading, which is clearly something I can do with Teegan right next to me. But it's easy to get lost in a good book. So I set a timer for 15 minutes. I get a bit of me time and if I get distracted by the story the timer reminds me to check on Teegan. It may not seem like much but believe me, 15 minutes here and there will help stave off the burn out.

So to recap: get outside, use the resources that are available in your area for special needs kids, and carve out time for you. I cannot stress how important the last one is. Maybe because it was so difficult for me to do. Even if it seems impossible there is a way. You just have to find what fits in your life and works for your family.

And please realize you weren't meant to do this alone. Enlist the help of the people that love you. Most of them want to help you, they just don't know how. Let them know what you need. It is my sincere hope that this helps someone out there. Good luck and thanks for reading!

I had no idea I felt that way!

    I discovered a rather surprising instinct the other day. I really, REALLY want to feed my child. It's not something I had ever really thought about. Our kids are hungry, we feed them. It's a matter of filling a need, I suppose. But perhaps there is an inner drive, an unconscious desire to nourish our children.
   Teegan can't eat by mouth. He can't control where the food goes. Sometimes it makes it to his tummy, but sometimes it goes in his lungs. So he has to be fed by a tube that goes directly into his little belly. Once in a while I give him a taste of soft foods. Yogurt, pudding, stuff like that. Well I decided to get him a jar of baby food. I wanted to expand the tastes he was getting. I sat down with the jar and a spoon and gave him a taste. I was blown away by this overwhelming desire to actually feed him. I wanted so badly to put a full bite on the spoon and give it to him. It was so strong that I had to put the jar away.
    I'm so amazed at this new found feeling. I wonder how many moms like me there are that have felt the same way. Why didn't I feel that way all the times before, when I gave him a taste of something I was eating? Is it because the food was solely for him this time? He gets the nutrition that he needs, so why do I feel like something is lacking. I guess feeding a child is so natural. I think we instinctively want to feed our children. On a cellular, primal level we NEED to feed them. I had never considered that. And before I sat down with that jar of apples I hadn't realized that I was missing that. I didn't know that I deeply needed to feed him.
   Of all the things that are "missing" from raising a child with developmental delays I hadn't realized that feeding from a spoon was one of them. I long to see him sit up, take a step, say "mommy", and the list goes on. Now I can add "eat from a spoon" to that list. In a way it's good though. Being able to eat is probably one of the more attainable goals for him. He's able to do it, just not consistent enough. As he grows and strengthens he could become more consistent at swallowing. Here's hoping. The list is growing longer. It would be great to cross something off.

Happy Birthday Teegan!!

   Centuries ago, when people started celebrating birthdays, it was because the mortality rate was so high that each year a person survived was an occasion worth celebrating.  Today we take birthdays for granted. We celebrate because it's just what people have done for century upon century. It's a reason to have a party, gather with friends and family, and get some cool stuff.  :)  We have forgotten how fragile life is. Surviving another year is no longer a monumental occasion. In fact, we tend to lament each year as we get older.
   Today is Teegan's second birthday. It is a monumental day for me. The fact that I have been blessed with another year with him is amazing. I no longer take birthdays for granted. Not just his, but all of my kids. I think I understand the person who threw the very first birthday party ever. I'll bet it was a mom. I can picture her, on her child's first birthday, rocking that child and thinking how lucky she is that her baby is still in her arms. I imagine her telling her husband that they must celebrate. Gather all the family together. Maybe she made a special blanket to commemorate the occasion. I understand now why we celebrate. Each year is a gift, a milestone, something to be immensely grateful for.
   I recently learned that in the state of Nevada the legal definition of death is if your heart stops beating for 60 seconds. One minute, such a short length of time. It takes longer to get a cup of coffee. Last April Teegan's heart stopped for 10, maybe 15 times that. I can't bring myself to actually type the words...to see it in black and white...but I'm sure you know what I'm getting at. I joke that he had to run back "home" because he forgot something. Maybe he forgot to give Heavenly Father a hug and kiss before he left. Or there was some crucial instructions for his time here on earth that he forgot to get. I picture a kid heading towards the school bus, then realizing he forgot his lunch box and running back to get it. (I have quite the imagination, in case you couldn't tell.)
     I cherish each moment with Teegan. Almost losing a child will do that to a person. But truthfully, it could have been any one of my kids, for any number of reasons. We expect to live to a ripe old age. We expect to watch our children grow up. We expect to become grandparents. But none of that is set in stone. Teegan has taught me that. And for that reason I have come to cherish each moment with all my kids. Each one of their birthdays is a joyous occasion. Every hug, every giggle, leaves it's mark on my heart. Having a child like Teegan....well....it's the hardest thing I've ever had to do. I'm just grateful that I can find the good, see what I've learned, how far we've come as a family. He brings out amazing qualities in my kids. He shows me just how awesome they are. I'm so grateful for the two years I've had, and pray I have many, many more.

Teegan's Highlight Reel

   I realize there's still a lot to be told in our back story. But Teegan's had an outstanding couple of weeks, while the last couple days have been pretty yucky for me (for other reasons).  So for the sake of my sanity I'm going to write about Teegan's recent days.

   Ok, I may have fibbed just a little. To highlight just how amazing his new developments are I have to tell you a smidge about April 15, 2010.  It was Billy's sixth birthday.  We had a jumper and the neighbor and Billy were playing in it.  Will and I were setting up for the few people that we were expecting.  Teegan was napping.  When I went in to check on him he wasn't breathing and was non responsive.  Paramedics were called, CPR was started, and I'm honestly not emotionally prepared to completely revisit that day yet.  But I will throw in a shout out to the officer and paramedics who saved my son's life that day. 

   About six weeks in the hospital followed.  Tests were run and the neurologist told us our son was severely brain damaged.  Just as bluntly as I just told you.  Guess he's not much for bedside manner.  I told you all this because I want you to understand how amazing Teegan's recent accomplishments are. That doctor listed Teegan in a "persistent vegetative state".

    Skip to present day.  Teegan had lost all the progress he had made on that day in April.  It was basically like taking home the "newborn Teegan" all over again.  And there hadn't been a whole lot of progress since then.  That was until about three, maybe four weeks ago.  I noticed more responsive behavior from him.  He had more voluntary movement, always in response to noise or touch. His feet are ticklish again. He moves his arms when he's touched. He had always squeezed something that was put in his hands but now he was starting to move them back and forth.  Then two weeks ago he rolled from his side to his back.  All by himself.  It was astounding.  It was amazing.  It was all sorts of words that start with A.  (heehee)  But seriously, I wish I could convey to you what it feels like to see your child do something that the doctor said he might never do.  Will and I never fully accepted the doctor's report, but it is satisfying to finally have a visible manifestation of our faith.  Now I can't keep him on his side. A couple days ago he figured out how to get from his side to his belly, too.  He doesn't have the strength and/or muscle control to get his arm out from under him, but I believe that's coming.

    I'm just so amazed at how quick Teegan's progress has been. It's like a switch was flipped. His brain finally started saying "hey, muscles, get to work! We've got a lot of catching up to do!"  lol  He can tolerate longer periods of therapy, he's not that far from the point he was at before April, oh and he's gone three consecutive days with only two seizures per day. He was having anywhere from five to eight. I truly believe that by the end of this year I will see my little man sit up. One day, I will watch him walk.  One day, I will hear him call me mom.  One day, I will pull out that hospital discharge summary that says "persistent vegetative state" and throw it in the fireplace.  :)

Good night everyone!!