The Samantha Years

The Good, the Bad and the Ridiculous

We are waiting to go home. We have been waiting since Wednesday. On Wednesday we found out that Samantha’s infection is sensitive to an I.V. anitbiotic. I.V. antibiotics are not our choice but we can go home on them with a PIC line.

“So let’s do a PIC.” I say on Wednesday.

“We can schedule the PIC for Thursday and you can go home after that.”

Fabulous.

Thursday morning roles around. We have denied poor Samantha breakfast so she’s ready for the procedure…..let’s get things goin’!

“The procedure center is all backed up and they can’t do the PIC until tomorrow.” I am told.

Seriously?

Look at this squirmy, pink child wiggling in the bed. She feels good, it’s time to go. No, we have to wait until tomorrow….another night in the germy, noisy, hospital….until we get a PIC.

Here’s irony for you. Children’s has these yummy coffee machines that will make you a personal latte’ or mocha. They are taking away the foamy milk and chocolate because the little packets cost too much. This makes me sad because I like my personal latte’ but hey, times are tough and I will make my sacrifices.

Until I realized that if we went home yesterday, the hospital would have saved enough money to provide us latte’ deprived families with yummy foamed milk for a year.

It’s the little things in life.

Ridiculous.

Samantha is in because of a new infection. It wasn’t her ear…it was another crazy, nasty UTI.

Bad.

Looking for our silver cloud, we have changed Urologists which I feel very good about. We are deviating from the Children’s system to Presbyterian St. Luke’s for this doctor. I feel a little guilty but hey….they are taking away my foamy milk! We are also going to see the Immunology Clinic at National Jewish. We’re getting serious here.

Good!

Another good is that I now sit on a couple Boards at Children’s Hospital. One met while we were in this week and I was able to express my ‘discontent’ at being held hostage for a PIC line and being re-admitted 48 hours after discharge. These are big deals to the big-wigs at hospitals and I think I made my point heard…..so much so that they are considering some policy changes.

Chiping away to change the world….chippy, chippy, chippy.

Samantha is as cute as a bug. She’s laying next to me playing with her balloons and thanks you all for your good wishes and prayers.

The Samantha Years

And…..we’re back…again

I’ll tell ya. We need a fast-pass admittance into Children’s or something. A little green card that let’s us bypass all the piffle. Piffle is my new word for the day; it basically means crap. If I have to tell another admittance nurse Samantha’s history, that we don’t smoke, we don’t have pets and yes, we do have a telephone at home, I will go absolutely bonkers….bonkers with the copious quantity of piffle.

Where, I ask you, where are the answers to these questions from last week.?

It’s the electronic age. I know it stored somewhere in her file that we don’t have a cat and that we feel quite safe in our home, thank you.

Piffle

Speaking of piffle, it is piffle that we are back on the 8th floor….again. Sweet Cheeks got home from the hospital on Thursday afternoon. We were looking forward to a nice weekend recovering and watching the snow. Friday she wasn’t quite herself. Saturday she woke up after a five hour snooze screaming and writhing in pain. A dose of Motrin and Ativan did nothing. Two hours of trying to comfort an inconsolable Samantha lead us to pack the car and head back down.

Fortunately, we were at Grandma Judi’s and Grandpa Jim’s. The car was packed in two seconds and we had a shorter drive to the hospital. Samantha decided to make the night a little dramatic by holding a 104 fever for a while and really, remaining in quite a lot of pain.

I have to say, Samantha pain is awful. She can go from 100 degrees to 104 in a matter of minutes. Her back arches, she screams, her heart-rate goes up to 160….and stays there. This goes on for hours AND after you have thrown in a gammet of calming, fever, pain reducing drugs.

Piffle.

18 hours later, she is sleeping soundly due to some heavy duty drugs and a couple doses of Vanco. The question now is why did she spike? Do we leave her on Vanco or see if there is another reason why she is sick? And really, when do we get to take a healthy Samantha home? We are putting a care conference together tomorrow to see if we can come up with a plan.

Piffle.

The Samantha Years

Oh MRSA, MRSA, Me

Ick-a-roo….such a nasty bug.

So, it is confirmed that the critter who has taken residence in Sammers ear is MRSA.

That’s the bad news.

The good news is that we think we caught it early enough so that she doesn’t have to have a PIC line and she doesn’t have to go home on I.V. antibiotics….we think….This is good news for many reasons.

1. PIC lines are evasive and direct lines to Samantha’s heart
2. They freak her mother out
3. I.V. antibiotics are administered around the clock so no one sleeps
4. Everyone is happier when they sleep
5. Vanco is a tough antibiotic…hard on the entire system and something you don’t want to become resistant to…the less time on Vanco, the better.

So keep your fingers crossed for oral antibiotics!

On another note, they let us make her formula here in the hospital. This was great because the canned soy nasty RCF is hard on her tummy. She would much rather have coconut milk and Odwalla Super Food. I went out and purchased everything we needed; came back to the hospital and realized that we didn’t have anything to store her formula in. A bottle was too small. The container needed to have a wide-mouth opening to pour all of the ingredients into, a tight seal on the top and a side volume indicator would be helpful too….what to do….what to do.

Ironically, a container typically used for ‘output’ rather than ‘input’ seemed to work perfectly…..a urinal.

We are mixing and storing her formula in a plastic urinal. Hey, it’s sterile, has Samantha’s name on it. NO ONE tries to drink from it. I think I’m onto something 🙂 Call me the Mother of Invention.