Posted (jooosh) in All Posts on April-26-2009

The Bun fought going to sleep last night, and finally settled down around 11:30. Even thought she slept through the night (thank God), it still made for a very rough morning. I attempted to wake her at 9am so we could start her routine. Well, she was not going to have it. I tried softly singing to her and rubbing her back, but she didn’t want to get up.

I changed her diaper so I could hold her. After that, she got herself pretty worked up, so much so that I was having a hard time consoling her. Her saturations kept dropping and not coming up. 70…60…50..! What the??!!! It was at that point I realized that her oxygen tube had disconnected from the water trap in the line.

I cranked up the O2 so the Smurf colored Bun would recover a bit quicker. She was still really fussy though…and so snarfy. This cold, or whatever she’s been dealing with over the last couple weeks, is really reeking havoc with her getting O2 through her nose.

As soon as I would try and lay her down to feed her, she would react if there were needles in the bed. She would just cry until I picked her up.

Well, I wasn’t going to be able to feed her this way, so I wrote off the morning routine and brought her down to her bed downstairs. She calmed down enough there for me to feed her, but continued to be fussy afterward.

Shortly before 10am Ella had a major retching episode. She absolutely refuses to drink anything, so all her secretions build up and they tend to be pretty thick. We try to manage them as best we can with some saline in the nose, but she still struggles to swallow.

The scary moment occured when she coughed, gagged, and wretched a bunch of snot and scretions into her mouth, filling it up! It happened so quick I couldn’t get her on her side or turned over so they would come out. She started to breathe them in and gag and cough rapidily. She finally managed to swallow most of it down and catch her breath. I’m pretty sure it was as scary for her as it was for me.

After this event I had bit of a breakdown. I think it was the emotions of everything catching up with me.

The challenges of our special needs child on top of life’s other realities over the last few weeks has me worn down. I do find incredible strength and peace in my relationship with Christ, but my emotional man is pretty raw. Emotional coping for me includes eating, escaping into TV, eating, not focusing on the details, oh…and eating. These mechanisms for escape tend to harbor issues of their own which can also make the situation worse in the long term.

With that said, I’m not denying the truth of the situation. I know how real it is, and it really hits home when I project Ella as the child in Tina’s womb. The bottom line…that’s our kid in there. It’s hard to imagine that it is our child going through this, but it’s a life that God created. He knows all the circumstances surrounding these events, and also how they will play out for eternity.

Our trust in him does not guarantee an easy path for life, but we can hold fast to His promises. The scripture at the top of the blog (Jeremiah 29:11) rings more true now than it ever has.

Enjoy the pictures of Ella. The one below was snapped in between her weekly cannula change. She had a good time this evening playing in her exersaucer. Praising God for all the progress she’s made.