progress

B has been a good while this weekend with no fever.  It's back tonight though...boo!  It's only gotten up to 100, but please keep praying for her!

We are off bright and early in the morning...yes, this will be week 3 of doc appts almost every day!  The tentative plan is to do another blood culture and have an echo done.  We will go to the doc office first, then possibly to the ER for blood to be drawn (maybe this can be done in the office, but poor B is all bruised from all the sticks in the past 2 weeks so they may not even try there), then to another clinic for the echo.  Hopefully after all that we will stay out of the doc office until Thursday when we have a regular appt with another doc!

Even though B doesn't feel 100%, she was still smiling and laughing today!  She's such a trooper!

C

Friday Update

We just got home and settled from our 3rd shot of Rocephin.  Here is what we do know:

* her blood count was up to 33000 again so there is some type of illness

* blood culture is negative so far for bacteria growth

* she still feels poorly

* fevers are trending downward overall...this is good news and hopefully will continue

So...

* we are going to go the weekend with no antibiotics and recheck her blood again Monday

* we are going to get a heart echo on Monday to make sure there is no infection in the heart.  If this is the cause of the fever, we will for sure have to treat very aggressively in the hospital with antibiotics.

I am just praying that this is going to be one of those unknown illnesses because she gets better this weekend and we don't have to keep digging.

All of this medicine has upset her tummy pretty badly so we have some probiotics going to get her gut back on track now.

Thank you all for your calls, texts, emails, and prayers!  I had a little meltdown yesterday when I heard something that scared me (with a few preggo hormones thrown in), but our awesome doc called and calmed me down.  Please keep the prayers going up for my gal!

Y'all are sweet for asking about the baby...Mr Baby Terhune will be here around the first of November.  I will have a c-section since I had one with B.  He is doing great...just moving and kicking all the time.

C

The Scoop from Today

Back to the doc again today.  They are doing a blood count and a blood culture, which meant they had to stick her and draw blood.  It didn't go well...they had to stick her 3 times before it worked.  Thankfully this kept us from going to the ER to have it done (which was about to happen until stick #3).  We are looking at 2 options now:

1: She has a blood infection...possibly the bacteria from her UTI got into the blood stream.  This would mean 10 days of Rocephin shots.  She had shot #1 today.  These are super painful.  This doctor's office is not open on the weekends, so to avoid a hospital stay (which was offered) I agreed to take her to the ER over the weekend to continue to get her shots.  OF COURSE I would rather do that than stay in the hospital.

Her UTI is gone, so the blood infection is the only thing the docs can think of as a possibility now.

2: If it is not a blood infection then this means a for sure hospital stay to figure out what is going on.  I LOVE our children's hospital.  We are so blessed to live so close.  I do not have one single complaint about it...even the parking is okay!  BUT...it is SO hard to take care of my gal the way I like to in a hospital.  She prefers to be held way more than is possible when she is hooked to all those machines.  So I am for sure praying that we don't go this route!!

Thank you all so much for your continued prayers!  My specific prayers are for complete healing and no more fever now that we are getting this round of shots...also no hospital stay.

C

Ongoing Fever

Battley woke up running 102 fever again this morning.  We're starting to get very concerned because we don't know why (still a fever).  After tackling the UTI and determining that her lungs are clear of pneumonia, this will be one week of straight fever.  Catherine and Battley are headed back to the doctor this morning. Please pray for Battley to feel better and for Catherine to figure out what's making Battley feel so yucky.

Feeling Yucky

Miss B is not feeling too well right now.  She has a UTI.  She has had 2 shots of Rochephin and we may go back for a third tomorrow morning.  Yesterday after her first shot she started running a fever of 103.4...very scary for Momma.  Motrin and Tylenol haven't helped much so we are playing the waiting game.  She is doing better today, so hopefully by tomorrow she will be feeling even better.

H started HIGH SCHOOL yesterday...I am NOT really okay with this.  I wish I could shrink him back down to 2 or 3 and start all over!  I have a few weeks to get okay with this though before he turns the BIG 1-5 and gets his Driver's Permit!!!  

Hmmm...that's it around here.  It's too hot to do anything or go anywhere...haha!  

C

Milk Milk

B and I have been busy, busy, busy!  We had a total of 4 doc appts last week.  One of those appts was for shots only.  She had 3 at a time this time.  By Saturday morning she was running 102 fever!  Luckily we have just found a pediatrician with an after hours clinic!  So off to doc appt #5 we went on Sat morning.  You never know what kind of doc you will get when you are just seeing the person on call...by this I mean there are docs out there that give us the brush off because she has t18...they don't care to see us...not sure why, but it is what it is.  I prayed the whole way there that this doc would be accepting.  He could not have been nicer!!  Seemed B had a reaction to the combo of shots and all was better by Sunday afternoon!

Today my gal is napping peacefully while I type.  She had a great first feeding!  This infant formula is working so much better!  I spent most of the morning on the phone between our insurance company and the compounding pharmacy...some days I really feel dragged down by this and just want to cry, but today worked out in the end!

We are switching back to a compounded version of Prilosec instead of the kind you mix with water at home.  It's just one of those Momma gut feelings that I know will work better for her.

And on a somewhat random note, I just want to share about one of my loves in life:

When I was in college, H and I would listen to a radio show in the mornings called Kidd Kraddick in the Morning.  I love these people and they feel like a real part of our lives because we have listened for so long.  It is broadcasted from Dallas...no where near us, but wherever we have lived we have always found a way to listen.

One of the things I always knew about Kidd but didn't really understand how special it was until recently is that he has a charity called Kidd's Kids.  Once a year he takes a group of kiddos who have terminal or chronic medical conditions and their families to Disney.  Sounds simple enough but I never before Battley was born really thought about what this probably means to these families.  These are people who have maybe had one parent give up their career, probably don't have extra money because of their medical bills, it may be just downright hard to haul all the medical equipment they have, or they get left out because they are different...I could go on about possible reasons these families have for not being able to do a vacation.  Kidd's Kids actually finds a way to get these kiddos on a plane and makes sure they can really enjoy a week of no doc appts and just loving Mickey.

So, Kidd passed away at one of his charity events over the weekend.  We are feeling pretty sad about it around here.  I suppose I am sharing because I feel strongly that this is a great mission and I hope that the rest of his team can keep it going.  Check it out here: Kidd's Kids

C

Solution???

We switched back to B's infant milk on Tuesday.  Thursday was our GI doc appt.  Things seemed to be going much better by the time we made it to the doc!  Sooooo...we think we have found the culprit!!!  The pediatric formula B was using has a vanilla flavoring added to it.  This increases the OSMOLALITY of the milk.  It's a new word for me.  I had to Google it when we got home.  Basically we think that if we use an unflavored milk it should solve the problem!  I am so excited and thankful for this discovery.  We are already able to give her her milk at a more normal rate and she seems happier and more comfortable!!  Thank you all for your prayers!

I also discovered another new word this morning.  Photophobia.  It is something another t18 friend has been diagnosed with.  B is SUPER sensitive to heat and light.  When she is in light that is too bright she closes her eyes and often sneezes.  We cover her eyes even on the way to the car in the driveway.  She also has a blanket we use as an extra sunscreen in the car.  It looks like B probably has this photophobia which can cause pain when her eyes are exposed to too much light.  Yay for figuring things out!  It can be hard to guess what is going on with your child when they can't talk to you with words...thankfully B is super in tune with her Momma and is so good at getting her point across!!  I will be extra careful now with those sweet eyes!

Happy Friday!

C