Over the hill and how about that CT?

 Lillian is doing better, still needing frequent treatments and still has a good cough, but definitely over the hump I believe.  We saw her plastic surgeon today for the results of the cat scan and her entire left frontal sinus is blocked all the way to her nasal septum. He does not believe it's a tumor.  He's referring her to ENT because she may need a surgical procedure to drain it...oh and she has to have another head CT to see, if by chance the steroids helped at all. Long day...long week...long couple of weeks.  

17...sick...and no scope next week

 So Lillian had her 17th birthday and it was so much fun.  She enjoyed herself so much!   A week later, she got sick. A respiratory infection, I'm sure. I had to go up on her treatments every four hours and prayed things would not get worse.  She had an appointment today with her pulmonologist that they added us on to so he could give clearance for the scope.  He did not clear her.  So the scope we have been waiting to do for well over a year to check her Crohn's disease is not put off until March. I'm fine with that, really...I don't want her under anesthesia sick and neither do the doctors.  

Now, to say everything was smooth sailing...it wasn't.  I had to leave here (have her fed and treatments done and have Ezekiel to school by 8) as soon as I dropped off Ezekiel to get to her 0930 appointment.  Guess what, she wasn't on the schedule.  I recently got a new phone and I couldn't log in to mychart to show the messages that clearly stated she had a 0930 appointment.  After quite some time, a young woman came out apologizing over and over that she put the date in the system wrong and we could go ahead and see the nurse practitioner...(in this case, I would have preferred her doctor but what. ever. ) Immediately, I was near tears, which is cray.zay.  Why should that make me dissolve into tears???  Lord help me be more gracious....ugh.  

They are putting her on a round of steroids and if there isn't significant improvement by Monday, I'm to call back. I'm also to increase her inhaled steroids for the forseeable future.  She's supposed to have an infusion next week and I'm thinking that's not going to happen if she's still in this condition.

I'm tired.  It's been a long busy weekend through today with my husband at work.  I'm so grateful she's not in the hospital.  I can't help feeling a bit discouraged.  She's never cleared up from this previous nasal issue either.  I'm rambling.  

That's the story for today.  Pray for her.

Lest you EVER think our life is boring...Gross out warning.

 For months, and I mean months, Lillian has been dealing with some very thick, green drainage from only one side of her nose.  Perhaps since June or even May.  It's super odd because usually when she gets drainage of any kind her asthma flares and sometimes, she even ends up with pneumonia.  So, this drainage is so thick it just sits there, and it seems to never end.  When she does happen to sneeze, it is unreal.  I'll spare you the details.  So, in August, her doctor put her on antibiotics.  Did not help.  I called a week and a half ago and got her in to see him.  He described that nostril looking like someone caulked her nose with snot.  Just the one side. He put her on another antibiotic and said we'd look in 10 days because he didn't want it to abscess.  (there's something my brain never considered) I took her back Thursday and there was no improvement.  Her doctor is going to be gone for 2 months.  He put her on the antibiotic course again and put in a referral for her plastic surgeon because she might require revision surgery for lesions because of all the surgeries she has had in her mouth.  He also has us doing aggressive nasal washes.  I barely kept it together all the way home.  I cannot even fathom her having another mouth surgery.  Those were terrible.  TERRIBLE.  Not prepared in any way, shape or form for that possibility.  

Today, this afternoon, I found a large abscess behind her ear.  At the bottom of her lobe. She needs prayer friends. I need prayer.  I'm not afraid, but I'm discouraged.  I know the Lord is already there.  

This is stressful.  

By the grace of God, she is tolerating the nasal washes like a champ.  I'm soaking the abscess in hopes it will recede.  

Out of sorts and edgy...and Dr GI appointment

 That's been my day.  That is how I've felt.  Can't really say why.  That is not my general disposition.  I'm tired and haven't slept well in months for several reasons which I won't go into, so why don't I just quit whining and get to the update.

We saw Lillian's GI dr today and dietician.  When the nurse took us in the room, she stated a med student would be seeing us first and then the Dr.  I was not thrilled.  I didn't want to go through her entire history with a new person.  And I almost said as much, but I bit back my words.  When the student walked in, I knew her immediately.  She had been on Lillian's team the last two times she was admitted.  She remembered Lillian when she saw her name on her list this morning.  It was nice to see her outside the hospital setting.  

So....she is going to be scheduled for another scope to see if she's in remission.  He still wants me to try to collect stool samples.  Good times never end here...HA! Now I will have to contact her pulmonologist and hematologist to see what they want to do medication wise prior to the procedure because she will be under general anesthesia.  Due to her history, she will also likely have to have a 24 hour stay just to be on the safe side. 

She gets her infusion this coming Wednesday and after the scope we will have a forward progress plan.  

In other news, I didn't blubber like a baby this time. I told him I was pretty stable today and he was like no it's ok, you can breakdown it's fine....LOL.  He probably has to pep talk himself when he comes to our room.  

Grieving

 My 91 year old grandmother took her last breath last night. She was admitted to the hospital a week and a half ago with difficulty breathing.  She's overcome a lot in the last few years, breast cancer, a ruptured bowel and sepsis, rehab and then back to living on her own.  Several weeks ago she took a tumble down her concrete steps and had been in a lot of pain.  It's a long story, but the end is, she was relieved of her suffering last night.  

It has been a long week and a half.  She had her mind up to the very end until the morphine took over.  She knew it was the end. 

 The grief is suffocating.  

My grandma played a huge role in my life as a child and as an adult.  She was my safe, soft place.  Mostly. Ha!  

Lillian seems to understand, I think.  She cried as hard as I did last night and that was doubly awful.  So today, I'm trying to bite back my tears so she doesn't suffer too.  

Pray for my mom and my uncles.  This is hard.  She'd probably kill me for posting this picture.  Fairly certain she's holding Ezekiel in this one and that is a real smile!! 

Ecclesiastes 3:1-15

Some days are more difficult than others

Today has been hard for several reasons.  My kids turned into the bickersons the moment we got into the car.  Lillian's mood swings have been far and wide which is exhausting and her little brother just jumps on the antagonistic bandwagon.  Does not help that I'm sleep deprived from nightmares.  Maybe that's the whole problem to begin with.  (me!) 

There is an ongoing health emergency for my grandma.  

My heart is heavy for multiple children who are suffering.  

Fellow Moms/grandmas who are in the trenches of all that entails.  

Friends mourning.  

All I can do and the best I can do is pray.  In all transparency, I'm heavy hearted.  

I trust the Lord.

It's been a long day.

Pray for us.  

A barbie girl in a barbie world

 Lillian had attended the movies with her siblings some time ago and saw the ads for the Barbie movie.  She LOVES barbies. She told them on the way home that she wanted to see it and it be a girls night out with Grandma, Mom, and sisters that could be there.  She picked the dinner place, Panda Express, and then we headed to the movies.  

Turns out the movie was pretty ridiculous.  Do NOT waste your money or time.  Lillian didn't even fully enjoy it. She gave it a thumbs down halfway through.  

Big sister Bethany made our shirts which she was also displeased with wearing, this girl does NOT like any clothes with writing on them and never has.  

 The movie may have been a disappointment, but the memory will be a lasting one for me.