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!