Tonsils out....S/P two weeks one day

Lillian continues to struggle with keeping her tube feedings down, particularly her first feed of the day.  She is coughing quite a bit at night and I can hear the drainage just sort of stuck in her throat.  She has spent the last 15 minutes holding her nose and blowing so hard I can hear it coming out her ear tubes.  She is having quite a bit of trouble swallowing ANY type of solid.  Most of the time she winds up gagging or getting so choked I start thinking she'll need the heimlich. She seems to be doing ok with liquids.  I am keeping her out of big crowds trying to avoid areas with tons of germs floating around.  Her therapists and I thought it best to stop therapy for this period of surgery time and since it falls around holidays, it's not  like she's missing all that much anyway.    

One would assume that after five years I would be accustomed to all this surgery stuff and especially all the illness she deals with so regularly.  Unfortunately, I don't think I am.  Does anyone else feel that way?  Holla back.  I think it's partly because I WANT her to be well so bad and not have to struggle so much.  I don't know. 

I struggle at this time of year.  It's not something that stays with me ALL the time...I think it is just the anniversary of when life changed so dramatically. Changes that  have been so incredibly stressful...but also indescribably blessed. 

I still can't really wrap my brain around the fact that in less than a month I will be handing her over to a surgeon, yet again, and the nerves and the tears and the hopes all mount up.  It becomes so emotionally taxing to put her through each thing.  I actually made it out of the OR this last time before the tears fell.  Then, I sat in the waiting room, staring out the window crying quietly...wondering to myelf  why do I cry....and it hits me that I'm weary, so weary of putting her through it. She is so aware of what is happening now, it's harder and harder.  She knows where we are and what is coming and she fights the medication they give her for calmness.  Even as I type, scripture fills my mind about not worrying about tomorrow...God is already there.   I know.  I know.  It's my faith in knowing that very fact that gets me through every day.  If you wonder how I do it...that's how.  Not in my own strength. 

Thank you Jesus for another day.  Another day with my Lillian and each of my girls.  I know your hand is on us and all that is to come.  Bring me Your peace. In Your Name

My Lucky Number

Five has always been my "lucky" number. Not sure why, but it has. Ironically, I have five children. All girls. All of which have changed me and made me who I am today. Specifically, my fifth daughter has probably made the most impact in my relationship with the Lord. I have been a believer since I was five years old. (funny, hadn't realized that significant five until just now) the same age my sweet girl is as of yesterday. We had a little party today. Smaller than originally planned because of her recent surgery and her upcoming one. I had visions of her little school mates and LOTS of friends who have traveled along this journey with Lillian. But, as time got closer and the surgery had its kinks and I started thinking of the germ factor....the party became a small gathering of some grown up friends and family. Mere words cannot express my joy in today's activities. Even as I stood making snack foods for the "party" I was struck by how blessed I was to be making them for the very event we were celebrating. I find myself thankful in even the most mundane tasks simply because I'm so aware of the gift of her presence. I'm so thankful for each year....each moment of her life and the life I have with her and all my family. Life could be so different and even in the midst of all the struggle....I'm so thankful...so blessed beyond words. Enjoy a peak into our FIFTH celebration!!

Thanksgiving Memories

Five years ago, I woke up on Thanksgiving with searing pain in my head and tears from the pain of it.  My sister in law and niece worked together to make a Thanksgiving meal for all us because I was on bedrest, pregnant with Lillian.  We knew I'd be in the hospital the next day for an amniocentesis and and external aversion (where the manually turn the baby by pushing on your stomach).  Five years ago, we never imagined the journey we'd be jolted on to.  I am so grateful for the last five years and the fact that I am celebrating today with ALL of my children.  Happy Thanksgiving. 

This is the story of a girl

who is keeping very strange sleeping times since tonsilectomy.  A girl went  to school today whose mother had to pick her up half an hour after she'd arrived because she wouldn't participate or get out of the teachers' laps.  This same girl crawled up in her big sister's lap and in about one minute...fell asleep.   At 6:30 pm.  argh. 

SO- she missed her Thanksgiving party and her birthday celebration.  AND now, she sleeps...NOW?  Ai-yai-yai.  Not good at all. 

I guess it's safe to say she is not back to her baseline.  Her feedings are still not going 100%.  Pukage is still a big problem. 

Momma was having a BAD day yesterday, but I'm much MUCH better today.  You should see the post I almost posted yesterday...YIKES! 

To be Continued....

Tonsils out POD 2

Lillian is not having a good day AT ALL.  She woke up this morning with a temp and immediate gaggin and wretching.  She actually slept through the night without pain medicine. ( her MOTY lost the battle of staying awake 20 minutes before the dose was due and didn't wake again until 5 which is when I gave her the dose she was supposed to have at 1230 *sucks in breath*) Anyway, I thought perhaps missing the pain meds caused the problem...BUT...when I started her feeding at 11, she seems to be ok until about 1130 when she became a vomit volcano.  Not pretty.  She pretty much emptied her gut...so plan B, I call my dear friend, Nancy, and ask her to bring us some pedialyte.  We get the pedialyte, I cut her rate in half and start again.  She dozes off and I think, ok, this is good...112cc's later, I run down to make a sandwich and return to Lillian puking her pedialyte, which continued on for 20 minutes. Plan C... Several phone calls later, her pediatrician has ordered her some zofran and changed her pain med to tylenol with codeine.  It's three oclock here, she's gotten a dose a zofran and in 20 minutes I will give her the tylenol 3 and start up some more pedialyte at a very slow drip.  She is not even wanting to drink now, which is bothersome, considering the throat really needs to stay moist or it will crack and bleed.  Her hydration is way down and I'm trying not to panick.  There is absolutely nothing routine when it comes to this poor girl.  POD 2, midday, pretty craptastic at this point.

There really is no place like home

Lillian is sleeping peacefully by my side.  She is so happy to be home.  We got home, Daddy took over, and I went for a nap.  Course I woke up feeling pretty rough, but it's amazing what your own bed and a couple tylenol later can do for you.  After a shaky, long, 24 hours, I'm feeling pretty good about how she's doing.  I worry a little about her sats dropping tonight, but hopefully all will be well.  She looks so peaceful right now.  So grateful and relieved to have this done.  I know we have to be watchful the next few days, but I am AMAZED at how well she handles it all.  We are keeping her medicated around the clock just to be on the safe side.  She is quick to grumpiness, but overall doing well.  I know it is awful to say, but I dread going through this all over again in a little over a month.  She's older now and so much more aware of all that is going on.  I think she is afraid to rest unless she's here in her environment.  THANK YOU ALL so much for your support and prayers.  I kept thinking to myself how I wished someone would just show up with a meal for us so it would be one less thing to worry about, and guess what?  I get a text as we are leaving the hospital, a dear friend had a meal in the crock pot for us.  See, He is already ahead of me!! It is awesome to see God work and know prayers are being said.   Last night and this morning were so awful and I was a mess.  I laid down and decided I was just going to bawl and I just began to feel a peace about me, I felt the Holy Spirit at work in my soul.  Bringing me comfort.  I watched Lillian began to rebound her sats and finally sleep some.  God is good and ever present.  Thank you Jesus.

Tonsils shaved out...POD 1

Lillian had a brutal night.  She coughed and coughed hard all night long.  She slept very little.  I think she is just too afraid to rest.  She is currently sort of sleeping, but her sats are hanging below 90, so they put on a little O2.  Been a long little while since Momma had to worry about sats.  She had several episodes of vomiting mostly related to the violent cough, but some not, so they gave her some zofran.  I think that's the only reason she is sort of sleeping now.  Something I find very strange, she is very disturbed by the sight of her IV in her foot.  I hate when they come in and flush it bc she just has a cow.  It looks to be in fine condition, but she  freaks out.  I need about 10 extra hours of sleep and auto pilot on my van so I can make the drive home, assuming they let us leave.  I have a bad creeping feeling about the oxygen need at the moment though.  I thought we already had discharge orders probably waiting for us, but notsomuch.  I guess we will see her DR after all.  I'm tired and feeling the overwhelming desire to have a big ole cry, but am holding back the tears bc I don't want to look like a crazy person if someone comes in. 

Surgery Update

Sitting in Lillian's hospital room waiting for her to come from recovery.  Procedure went as planned, extra medication applied to curb bleeding.  Waiting to see her.  Surgery time was pushed to three due to complications before her. 

Winner and Updates

So, Lillian is go for surgery tomorrow.  Have to be there at 1030am.  Surgery at 12 or 1230.  Overnight. 

The video shows what is coming to.......MANDY, one of my life long friends!!

Thank you EVERYONE who prays for Lillian and our family.  It means more to me than anything that you pray and come and check in on her life.  Bless you all ;)

Drawing tomorrow

Drawing tomorrow, I promise, crazy day.  Stay tuned.

Dear Albuterol

BLOGAVERSARY GIVEAWAY CLICK ME

I thought in my twisted mind we might have said goodbye to you.  In fact, we have had to reinstate you to the family.  And not just for a quick trist...nay I say with more and more frequency.  Could we get by with just once a day??  No, no...no...could we manage with morning and night?  I think not.  Back to sometimes every four hours??  Say it isn't so.  I guess I shall thank you for your readiness and ability to heal a cough...BUT, can we make this reinstatement brief?  I shudder at the thought you may linger for an indefinite time.  

Yours Truly, Michelle

Blogaversary and Giveaway

Three years I've been blogging here in blogger. I think it's time for a celebratory giveaway. Surely I have some faithful readers/stalkers out there....I hope. :) Leave a comment and that is all you have to do. I will draw a name Sunday and post the winner and what you are getting. Leave me an email address so I can contact you. The gift will include some of my favorite things. Thanks for reading and commenting.

IF you are new to commenting....click on comments, type a comment in post comment box, select anonymous in user box if you don't have google or anything, just make sure you put your name in the comment box..:) Is that clear as mud?   If you know me outside blogger, through facebook or personally or you aren't able to leave a comment, send me a personal msg that you read this post!  Easy peasy!

IEP

I sit here, thirty minutes past Lillian's IEP, struggling with my emotions.  The first thing they hit me with was Kindergarden and how as things look right now...Lillian would be shipped straight into a regular class with no help and about thirty minutes a week of individual education time.  It has been a fear of mine that they would just want to ship her straight to K.  I'm not a teacher or a doctor, but I KNOW Lillian is not ready for the general education dept.  She is delayed, she doesn't have concrete communication, she's physically delayed to a degree which I think would be dangerous to her in a normal classroom all alone.  Her teacher feels the same way.  I don't know even know if I'm conveying this clearly.  Her teacher will have her tested in the springtime again, in the belief that she will qualify for the special needs classroom at a different elementary school.  She would be in this classroom and spend thirty-forty minutes in a general education classroom with her peers each day with an aid.  The whole situation is stressful.  I have been told repeatedly that I should not worry about K bc it is so far away.  Well, guess what?  It's not.  These are decisions that have to be planned on and made in the here and now.  You know what I get more than a  little tired of...being told when and why I should be thinking on or considering certain issues.  The best thing I heard in that meeting was silence.  It is  A LOT to consider and decide on.  Bottom line, I feel like I'm stuck in between a rock and a hard place.  Just hearing the words Moderate Cognitive Disabiliy labeled on Lillian is a hard pill for me to swallow.

I just don't want her to struggle.  Just like I don't want to see any of my kids struggle.  It's been a bit of a rough morning for me.  Maybe in a way that most people can't understand. 

Medically, she is still battling a whole lot of snot.  Her mornings are rough with lots of gagging and choking.  She struggled with her food in speech this morning because of all the drainage.  My warrior girl just keeps going with the flow.    

The 15th

Lillian has been recovering so slllllllloooooooooooowwwwwwwwwwwwwwlllllllyyyyyyy.  Let's see, did I already mention the "nurse" from dr lungs put her on a different antibiotic than he and I discussed?  Omnicef. Did I mention how she filled me in on the dangers of Lillian being on such a high dose antibiotic?  (levoquin) when I mention the name.  Since when do their opinions override the doctors?  Annoying.  I've had two doctors ok her being on that med, heck, if I looked at all the horrible side effects of all the massive drugs they've put her on, she'd have never gotten out of the NICU. 
 By this past Thursday, one of her ears had started to bleed.  My brain just doesn't comprehend how she gets sicker when she's on medicine to help her get well.  Frustration.  I have kept her out of therapy for the past week in order to maybe give her more rest.  Her surgery is now scheduled for the 15th.  Tomorrow, I have her IEP at school.  Dreading it all.  Doesn't help that my hormones are at their peak right now.  Just sayin.  Her disposition seems to have returned to normal, so at least we have that.  We gave her treatments every night for about a week and that seemed to make a huge difference in her nighttime cough.  Hopefully we will be good for surgery by next Tuesday and we can keep moving forward.  Going to be a fast week that will fly by me and I'll wonder where that time went.