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. :)
No comments:
Post a Comment