"Everyone needs a place to call their own"

Thursday, March 29, 2012

Autumn is 4 months old!

What I'm Up To:
My drooling has turned into a falling river of spit!
I have found my voice and love making new sounds!
I also figured out that my feet taste and feel pretty neat!
I am still working on a bottom tooth or two but no sign of them breaking through yet.
Not sleeping much at night, I am a super party animal!
I got my ears pierced so that was fun (not!)

What I'm Wearing:
Still in size 2 diapers (they are getting snug)!
mostly 6 month clothes
some of my 3 month stuff still fits me
lots of ridiculous hair bows and headbands

What People Say About Me:
That I am looking like my daddy but mom doesn't think so!
That I am a happy baby
That I have the cutest chunky thighs that don't match her petite body
That my ear rings are gorgeous

Other Stuff:
I can take my paci out of my mouth but putting it back in is another story!
I can hold lots of toys now and I mostly use my right hand
I went to the beach for the first time
Last time mom took me to the Dr I weighed 13.7 (about a month ago)
I am loving mommy and need all her snuggling time

A Note From Mom:
Dear Autumn,
I can't believe you are 1/3 of a year old already! My how time flies!  I love listening to you make your sweet sounds and love seeing your happy smiley face each day!  You and your sister mean so much to me and I love how you look at her.  Mommy would like it if you would start sleeping sometime soon for me but I will love you even if you don't.  You are such a joy to our family and so stinking adorable!  It's hard for anyone to take their eyes off you.
I love you so much! Can't wait to see what's new with you next month!!

Monday, March 19, 2012

Bronchoscopy Update

Ayla had her bronch done on tuesday March 13th.  She was such a trooper and knew everything that was going to happen to her and never shed a tear.  I hate how strong she has to be at only 4 years old! But she is SO strong and will continue to have to be strong throughout her life.
This is a picture of her before she got her "silly juice" she was such a joy!
This is a picture of Ayla after the "silly juice"
The procedure went really well and Ayla's lungs looked good! The Dr. said better than she expected.  She did have some damage from reflux in her airways.  So we are working on getting that under control.  We waited to hear about the culture and heard today that everything was normal.  Praise God!

Ayla is still coughing some (more than normal) and we are hoping that starting her on zithromax will help with her tummy pain and cough.

Ayla took a little longer to wake up after her bronch and she woke up MAD! She was flailing her arms and legs around and was very agitated.  She finally vomited and got a little calmer after that.

This is her after she got into the car.  She passed out and after an hour was rare-ing to go!! Been herself ever since- we are so grateful.

Friday, March 9, 2012

Answered Prayers! New plan!!

We just got a major answer to prayer! Ayla's culture is done and did not show any infection (which I am totally surprised about) not to mention she slept soundly for 11 hours last night and didnt cough. She has not been coughing today either! The drs nurse called and said in lieu of this she doesn't think it's necessary to admit for a tune up! She will however go in for a bronch on Tuesday at 8 am to look at her lungs and take another good culture. Now we need more prayers for clear airways and gorgeous lungs on Tuesday!

Ayla Update: Results

We have gotten some good results from most of the tests that were ordered.
C-diff was Negative
Tummy Xray showed Improvement
The Chest X-ray was not clear, and accompanied by the cough she presented this had the Dr and myself concerned.
The Throat Culture is still early but showing Normal Flora
We talked with the Dr. on Wed night and have a plan to admit for a tune up next week sometime.  And also do a bronch along with Picc line upon admission. Most likely have a few days in hospital and then come home on home iv's to finish out.

Ayla's tummy has still been bothering her but getting better each day.  Yesterday she attended school and got to take graduation pictures with her class.  After I picked her up we went to the park and she played hard for a couple more hours.  She was asleep during her night time treatments-she slept very good and didn't cough.

This morning she has not coughed as much either.  I don't know if this will affect our plans for admission but unless her lungs sound better I don't see things changing.  I really want this bronch to happen- it's funny I was so reluctant about it at first scared of the procedure but now I know how vital it is to her health to know whats going on deep down in her lungs that I am almost excited about it.
I guess God has a way of preparing you for things one way or the other.

I have a call in to the nurse to get the particulars about next week for planning purposes.  We have a plan to stay at the RMH and I will stay with her all day and once she's asleep for the night take the baby back to RM and nurse and get her through the night.  I now have 2 children who need me and while this is very different from other hospitalizations we have had...I think it will force me to rest and in the end will be just fine.

Hopefully the nurse calls me back and hopefully her culture remains normal as it finishes out the next few days of incubating or whatever they do with it.  Hopefully her lungs have improved and her tummy continues to do just that.

For now we wait and see....

Tuesday, March 6, 2012

Ayla Update: Crackles, blockage, Cdiff =CF Sucks

Ayla had tested positive for c-diff a couple of weeks ago got on Flagile and once she was off tested negative.  We were happy that the meds worked but remained skeptical since she has gotten in back pretty quickly in the past.
She got on Augmentin pretty soon after finishing the Cdiff meds for a cold and upon finishing those, cdiff symptoms seemed to return or "flare up."
With her cold she had a "dry cough" that seemed to hang around and as of sunday turned into a phlegmy cough.
So considering the stomach pains accompanied by oily frequent stooling and the cough I decided a trip to clinic was imperative.
Upon arrival her weight was down a little (never a good sign for a CF'er) she ordered a throat culture which we always get at clinic.  Talked for what seemed like forever about Ayla and her behavior.  We talked about Cdiff and the bronch that we have been unable to get done since she can't stay off antibiotics for long enough lately....and of course school (always doubting my decision to put her in).
She began examining her and heard a crackling in her lungs.  She has said she's heard this before but never seems concerned about.  Another CF mom on facebook said that her clinic takes this much more seriously and I will be asking some questions about this.  She also felt some "hard spots" when examining her tummy.  Ayla complained of pain when she touched certain areas so the Dr. ordered a xray of her abdomen.
We went over and my little "pooper-trooper" pooped on demand for me.  She has gotten rather good at doing this for all of the stool studies she has done.  Pretty sad but something I appreciate since we were able to drop that off while waiting for the xray to be done.
She had her xray and we got back in the car to head home after a 3.5 hour appointment. Before we got on the interstate the Dr had called me with disturbing news about her xray. She said she had a TON of pooped in there.  She said she had a lot of gas on one side (explaining her tenderness) and she was worried about her colon on that side (whatever that means) When things like this go on it makes me realize how much I need to educate myself.  She was worried about blockages and wanted her to do an adult dose of Miralax.
We did that at 7pm last night and it's 8:40 am and no poop yet.  She is looking for her to have a large stool and then we have to go get another xray to see if it all came out.  If not we are going to be admitted to get her cleaned out.
Then the next decision I will have to make is where to take her.  Shands vs Nemour's.  Since we have GI at shands and CF at Nemour's it's not an easy decision.  Although this is not liver related I still prefer shands GI to Nemour's team.  But Nemour's CF team I have been happy with.  I always get excellent care when we go to Shand's so that will be just weighing which specialty is more important to care for at that moment.  Since her culture could come back and show something she needs IV antibiotics for we need to be thinking about that.  Not that Shand's CF team is not the best of the best but let's be real being an hour from home vs four hours from home is a real concern.
Some concerns of mine:
My husband owns his own business and if he doesn't work we don't get paid
I am nursing Autumn and am basically a control freak about Ayla's care and want to be the one who never sees sunshine until she does when hospitalized and that won't be possible since we can't all stay with her.
How will I do that will Autumn and Nursing? Will there be someone who can help me? Ayla can not be left alone?

Hopefully.....none of these worries will be necessary....we will see what today holds....Ayla is complaining of her tummy hurting this morning and Dr. said that isn't a good sign....

Details to come -prayers appreciated....