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.

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 rang....it 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.

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, mostly...it 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.

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.

Woo hoo

Thank you prayer warriors. Lillian is finally fever free. We went back tot he doctor today and he said things looked and sounded good. She is still pukey, but such is life. She still has a really wretched cough, but definitely much better. We are going back on prevacid to see if that helps anything. She has a swallow study wednesday and follow up with the plastic surgeon thursday.

I wonder if they think I'm unstable

Lillian kept me up all night with coughing, vomiting and fever. Literally she threw up like every hour. So not pleasant. Today, we are back from the good old pediatrics office. Lillian got to meet a new doctor today and she really liked her. Poor Dr. Taylor, she is so mean to him. He was on vacation so she got someone we haven't had the opportunity to meet. I loved her, she was awesome! Dr. I decided to give her a rocephin shot. I love rocephin shots. I don't love that she has to get them, but they are so much more effective for Lillian than any oral/gt med. Dr. I says that something else has got to be going on for her to be running a fever for 11 straight days. I agree. (sometimes you feel like a nut job going in there so frequently, it doesn't help that I'm totally sleep deprived and mentally exhausted from seeing her suffer. ) Course, I prove my instability by having a break down, nothing like making that good first impression, huh? We go back Monday for another shot and hopefully we do not make it into the dreadful hospital before this is all said and done. Thanks for praying and keep them coming. Still in the woods we are.

See, that's what happens

It has not been a good day. Vomiting is back and very very fussy. Stupid virus.