Dr. Visits and results

I am pretty sure that between co-pays and parking I spend more money in one month at the doctor than I do in groceries…and I spend  A LOT at the grocery store!!

Last week was filled with doctor visits.  The kiddos had their CF clinic and both were supposed to have shots for: Ellie’s 4 year check and Cullen’s 6 month check, but it didn’t all work out like that.

Tuesday was our all day visit to Texas Children’s.  When I say “all day” I mean I left my house at 11:30 and didn’t get home until 6:20!  It’s not that our doctor is always running behind, it’s that we get visits from:

social worker

dietician (x2 this time)

nurse

doctor

respiratory therapist

x-rays (not every trip)

Keep in mind this is ALL x2 b/c we have two kiddos with CF!

Here are the results from the weigh-in:

Ellie Grace: (at four years old)

37 lbs (75%) 41 inches (75%) BMI: 75%

Cullen: (exactly 7 months old)

19.12 lbs (75%) 27 inches (50%) BMI: 65%

Usually, Ellie is a star at clinic.  However, after her last experience with the sputum collection (with a swab) she is scarred for life!  If you’ll remember, she temporarily quit eating and swallowing her saliva (which, incidentally, resulted in an ER trip and another trip to the pedi).  SO, folks…we were those parents this time.  The ones with the screaming child that had to be held down by three people for a SIMPLE throat swab!  She bit the tongue depressor in half, which stressed the nurse out and Brandon had to pry her jaw open to make sure she didn’t get any splinters from it!  I decided to step out of the room in hopes that she would relax without me, but daddy couldn’t get the job  done, so back in I went.  We got another nurse and sent B out in the hall with Cullen.  I held Ellie in my arms, another nurse held her head and another one held her arms and legs.  The whole time she was screaming, “I’m afraid!!!”  It was truly heart breaking.  I was a cross between heart-broken and seriously irritated b/c it was 5:00 at this point!  FINALLY, we got it, but only b/c she opened her mouth to scream and the nurse quickly inserted the swab.  Daddy did help a little though b/c he told Ellie the cotton swab tasted like chocolate!  Genius!!!

Over the holiday both kiddos were sick.  We were really afraid Cullen was coming down with RSV and Ellie appeared to have another sinus infection.  Both were treated (just in case Cullen’s wasn’t viral) and seemed to be better by clinic.  My one major question to the doctor was about Ellie constantly having to be put on antibiotics for the same symptoms.  She is like clockwork with fever and abx every 4 weeks to the day.  What I learned was interesting and frustrating!

So, when Ellie gets sick I take her to the pedi unless she is SUPER DUPER sick then I take her straight to TCH for the CF doc.  The last three months I have been to the pedi once a month for the same symptoms.  They usually treat her with omnicef which works, but the last visit was with our pedi’s partner and she gave azithromycin…which NEVER works on Ellie.  When I told this to the CF doc she wasn’t surprised.  Ellie always cultures e-coli in her sputum.  The only way to get rid of any bacterial bug that she gets is to treat her with an abx that is sensitive to the ecoli.  The pedi wasn’t doing that, therefore she was never really getting rid of the bacterial infection, just suppressing it.  How stinking irritating!  Why wouldn’t the pedi KNOW to treat the ecoli too?  Grrrr!  Let’s just say they will know from now on!

Since Cullen was sick as well we were on pins and needles waiting to see what his culture grew.  That scary news was delivered yesterday.  More in a minute.

The rest of the visit was pretty good.  Always a boat load of info and questions answered.  More than I care to rehash. 

On Thursday, I took both kiddos to Cullen’s 6 month check alone.  The nanny was getting over an allergy attack and B had to work.  It’s not impossible to manage both of them, but it is always an interesting experience.  Ellie got a “get out of jail free” card for shots b/c she had such a high fever the week before for several days.  The weight check was the same as Tuesday’s info and the visit was relatively short.  He is a fat little man.  He eats great (except for the issues with green veggies), BUT his left tear duct has not opened yet.  We massage daily and will continue to do so.  If it doesn’t fix itself by 8 months we will have to see an ophthalmologist.  I am praying that this will not be the case b/c I don’t want my little guy to undergo the procedure associated with opening the duct.

 

Next came the shots…poor little guy.  Cullen has always been a little dramatic when it comes to shots and this visit was a true example of that.  He was set to get a total of 4 shots, but we decided to do 3 and return in 4 weeks for the other two.  He was HYSTERICAL all the way to the car…where I ended up sitting and nursing him for thirty minutes while Ellie kept begging to go home and play with her toys.  Joyous day!

The week ended without a call from the CF clinic with a report on the sputum cultures. 

Yesterday, was the day the info was delivered.  The nurse called and said that Cullen didn’t get rid of the klebsiella that cultured last time and in addition he also grew stenotrophomonas Maltophilia.  Ellie cultured her usual ecoli.  The doctor was very concerned with Cullen’s culture, so now we are on 10 days of a strong abx called Septra.  Cullen is homebound until the end of the abx.  The two bacteria that Cullen cultured are pathogens for respiratory infections.  So, basically he is SUPER susceptible to pneumonia, RSV, bronchitis…ANY and ALL of those serious bacterial infections.  We will attempt to get rid of the steno with the oral abx, but if we are unsuccessful and he is still sick at the end of these next 10 days the next step is to be hospitalized and put on IV abx.   This is  LAST RESORT in my mind and I am praying very hard that our little man is bacteria free on his next culture. 

This whole disease is a battle.  As a parent I am always second guessing choices that I make for my kids.  Yes, they have to live normal lives.  But, sometimes normal is just too risky for us.  We aren’t just trying to keep one person healthy, we are constantly trying to keep three people healthy.  Each of us is at risk for culturing the bacteria that another one has.  I am constantly watching to make sure Ellie isn’t close to Cullen’s face.  Making sure we have sanitized everything separately.  Washing hands.  Lysol’ing toys.  It is a lot of pressure to say the least.  DON’T GET ME WRONG…I wouldn’t trade my life for anything on the planet, but some days are just full of anxiety.  A lot of this disease is still new to us and a lot of it is very scary.  A lot of the time I feel alone and it is hard to find people that truly understand what we are dealing with.  I was very blessed to get a call from my friend, counselor and CF specialist, Somer, yesterday!  She made me feel a million times better!  Talking to her always puts my fear into prospective. 

 

So, today was a new day.  We are at home, next to a warm fire, just relaxing.  Not that we could go anywhere anyway…B’s transmission has to be replaced in his truck, so he has my car! 

Never a dull moment around here!!!

If you wouldn’t mind saying a prayer for our little Cullen we would be so grateful.

 

Blessings,

Angie

My silly girl in her favorite jammies that she just recently wore the knee out of!  And, a picture of her watching a movie and eating popcorn!  Crazy girl!