Wednesday, September 30, 2009


I find it almost funny, well not in the least funny actually...but believe it or not, my precious woke up vomiting today with a 103 temp...which she has continued with all day. It is just this evenign that she has started showing signs of subdued happiness. This will be brief, as she is sitting at my feet wanting me to hold her.


Is it any wonder I've made a sheet pan of chocolately, salty, gooey goodness and intend to eat as much as I want the whole night long.

Monday, September 28, 2009

Never Ever Ever a dull Moment

First, thank you to all my blog buddies who pray and "listen" and lend support and did I say PRAY??

Lillian continued to run a fever from Friday through Sunday. I took her to the doctor today and they tested for H1N1 and it came back negative thank goodness. They think it is viral....bleck. I just hope it passes and she can get back to her norm. Whatever that Got the call from Pulmonary about the sleep study, (after I called twice last week) it was fabulous she said~ Can I get an AMEN??? HALLIELUGIAH!!! Tomorrow the planning begins to coordinate the pulmo doc and ENT for the dual bronchs. She stays overnight and if those go well, the trach comes out. OMGOODNESS. I truly cannot even begin to imagine what it will be like to see that thing come out. Really. It is just not even something I can comprehend. So, we wait anxiously, yet patiently for God's plan to unfold. I'm being reservedly optimistic. because I need to be ready for God's plan. His way not mine...I mean, we already know what mine is...hee hee.

Thank you all again, IRL and Blog Friends...if I were wealthy I'd take a trip to meet you all in person---such awesome people!!

Saturday, September 26, 2009

I want it to be me

Every labored breath, every needle in your skin, every prod and poke-I want it to be me

Every tube inside you, all the surgeries, all the pain you suffer- I want it to be me

All the hospitalizations, all the doctors to be seen, all the therapies- I want it to be me

All of the diseases, all of the infections, all of the unpleasantness- I want it to be me

Every single fever, that seizure, just that one, how can I explain it except- I want it to be me

Every puked up feeding, all the food you don't get to eat, every cough and discomfort- I want it to be me

But its you, it's always you the weaker one, the small- why can't it be me

Take it all away, make you well, give you some relief, but I am simply helpless, just the standby, I don't want that to be me.

You are feverish and vomiting and I sit by your bed imagining the worse case scenario, I wish I could take it all. I hope you always know, I've always wanted it to be Me. I love you.

Monday, September 21, 2009

The Long Version

Last I wrote we were feeling pretty confident that Lillian would get decannulated by November. Well, I haven't written here, just because I've been trying to digest. We went back down to the pulmonary team last Monday. At that time, they determined that it was unlikely we would get everything done that needed to be in order to decannulate. PTL I had my friend with me to distract me on the drive home, but when I did get home and alone the news settled in. I really struggled on Monday and Tuesday, but come Wednesday, I thought I had a grip on it- until- during her feeding she started to cough....which led to the inevitable vomit fest. Each time I bumped the trach trying to get her shirt off, it just made her puke even more. I totally lost it. So, Wednesday afternoon, I sobbed into a towel while our wonderful DT listened and comforted.
During the session we chatted and I guess I just needed to get that out, as she worked with Lillian, the phone was the sleep disorder center...they had a cancellation for Friday and could get Lillian in. There was lots going on this weekend, including me being the guest speaker at a Women's retreat. Needless to say, God worked it all out. (as usual) She had her sleep study, which we don't know the results of yet, BUT, they were able to cap her for the second half of it. I think that alone is positive feedback!! YAY! We should hear something by Wednesday. She has also tolerated the cap here at home for 25 minutes and I only took it off because they only want us to do it for short periods of time at first. I realize, that decannulation still may not happen in our time, but at least things are headed in the right direction, seemingly.

Tuesday, September 8, 2009

Snotty but Good

Lillian is overall junky, but I'm thinking it's the season. I've been able to pull back on breathing treatments wahoo, can I get an AMEN? I have started her back on claritin, and it seems to be making a difference. And, I hope you are sitting....we are up to full volume feedings for the first time since June. Double AMEN! Well, has been very difficult to get in her morning feed, so we have not been giving it. She always pukes it up anyway, so we don't try to force it on her anymore. So, when I say full volume, I guess I mean at each feeding, which hey, I'll take what I can get. We pulled her up to the table the other day and she had biscuits, gravy, eggs and man did she try her best to eat it. She was having a blast chewing and spitting....I guess I'm going to have to invest in bibs after all. It's a good thing! She loves butter, probably not a good thing, but oh well. I have been getting her soup and shakes when we have been in KY and had to get lunch. She loves the broccoli cheese soup from Micky D's. The speech therapist said shakes are a good consistency to get her on and I'm thinking the calories won't hurt her either. ( the calorie thing was a momism, not the therapist :) )

Isabelle has been pretty sick since Sunday and I'm hoping whatever it is does not make it's way to Lillian. Fingers crossed. I also wish Isabelle were better, so off to the doctor with her tomorrow. Never a dull moment here.

Thursday, September 3, 2009

I love good news

Lillian had her modified barium swallow today and guess what???? She passed with flying colors. While we could not get her to take a bite of anything bc she was very unhappy about the whole situation....she did fabulous!! I'm so relieved. I really had doubts that she would pass, guess I'm always trying to keep myself prepared for worse case scenario so I don't get disappointed. She did hold some stuff at the top of her esophagus for a moment, but she did eventually swallow it with no problems. Even though we've been giving her drinks and tastes for a long time it is just a relief to know we are not endangering her in the process. Praise the Lord.