It’s that time again! The Children’s Hospital Ride usually fills up by the end of May. Come join us!

Ah, the day of the discharge…busy, hectic, chaotic….

We needed to go home with an I.V. pump, I.V fluids, a new formula bag (I forgot my spare) and new meds. I needed to be trained on said I.V. equipment AND we needed to be out by 2:00 in order to make our mitochondrial appointment. This appointment has been on the books for five months…..oh we’re making this appointment.

This is a lot to coordinate on a Monday morning.

1:00- Seizure sign, balloons, flowers, cookies, cards, clothes and tooth brush are packed in the Malibu.

1:30- Our I.V. pump arrives but the tubing was missing. You can’t run an I.V. without it so our in-home care rep left to retrieve our missing parts. We went to our mito appt….which lasted three hours. Our home care rep came into the meeting with the pump, tubing, a manual, the 24-hour number and a ‘good luck’.

Hmmmm….so much for a little training before leaving the hospital….

5:00- We’re back up in our room collecting the last of our things to go home. I switch all of Samantha’s feeding over to our home pump and turn it on. We are ready, we are finally, finally, outta here. I wheel Samantha out while waving goodbye to our wonderful 8th floor team.

5:10- I realize that I turned the pump on but I never reset the rate of the pump. The rate is much, much slower for her new ‘j’ tube (25 mls an hour vs 250 mls an hour) I have just dumped 50 mls. of liquid into Samantha’s small intestine.

5:11- I curse

5:12- Still cursing

While I am cursing, I do turn her pump off and decide to keep it off for the next couple of hours to give her small intestine a rest. Samantha, bless her little heart, seems no worse for the wear. She gives me a big grin.

I love this child.

5:13- Still cursing

5:13 and 30 seconds: cursing a little more

5:14- Rattled by my mistake and a bit run down from a three hour appointment, I decide I can’t drive home without a coffee. While standing in line for said coffee, the 12 year-old behind me gets in my face with his sock-puppet…..

“Sock puppet stare down!” He says to me while holding this dirty sock with button eyes inches from my face. He then decides to sock-puppet stare down Samantha.

Bear in mind, I am still reeling from my 50 ml dump into Samantha’s gut. I look at sock-puppet boy and try to steer Samantha’s stroller out of sock-puppet range.

5:15- I can’t decide who I would like to sock puppet smack down more…. our cute little 12 year old or his mother who is conveniently on the phone and ignoring the whole situation; the sock puppet attack on my newly discharged, somewhat bloated daughter.

This better be a really, really good latte’.

5:21- I decide perhaps I am a bit high strung and probably shouldn’t relate to the public for a day or two.

5:51- Rush hour traffic stress ain’t got nothin’ on hospital stress. I sit happily in the traffic queue and watch my daughter in the mirror. She likes riding next to her huge get-well balloons.

6:25- Home, home, home, thank the bad-mommy-mistake-sock-puppet gods….we are home.

Mama gets so worked up about ME…especially when we’re here on the 8th floor. I keep telling her that even though we’re chillin‘ at the CH, life outside goes on and sometimes, it’s good to tell stories about other people; especially my good friends.

Here’s a little snippet about my buddy Kayla. Kayla is very used to being a T.V. star. In fact, you might recognize her from the American Furniture Warehouse Easter Seals commercials.

Because she’s a super star.

Today she is featured on 9 News; walking and talking about the gait lab at Children’s Hospital. I think it’s pretty darn cool that the technology used in movies like Avatar are helping kiddos like Kayla learn to walk. Someday I’ll be scootin‘ along at that gait lab…..once I get off the 8th floor of course.

Speaking of which, there is a rumor going around that I could be going home tomorrow! I’ll be going home on I.V. fluids and a 24 hour feed but home nonetheless.

Don’t tell Mama I told you. She gets a little paranoid and superstitious about posting a discharge that hasn’t happened yet; especially after last week! So, if you don’t hear from her until tomorrow eve it’s because she probably won’t say a thing until we step through the front door of our humble abode.

So send us a little prayer or good thought; do a get-Samantha-home dance and hey, check out my girl Kayla on 9 News, she’s pretty darn cool.

No Code Blue today, just some family time……

I have come to a profound, perhaps shocking conclusion…..

Are you ready?

I have determined that The Children’s Hospital, as nice as it may be, is a slightly stressful environment.

And numerous days in said environment could have an effect on the overall psyche.

I know…..you are shocked.

Today was busy; not stressful but busy. Samantha got her PIC line, (she is doing MUCH better). I didn’t fight with a doctor. We even had a tornado warning sending everyone out into the hallways.

Busy day.

Grandma Judi came in to give me a little respite. I am out of toothpaste and I feel that good dental hygiene is important…..so off to Walmart.

I’m waiting for the elevator on the 8th floor with a mom and her teenage son. As we pile into the elevator I think to myself that the son looks a little pale….really pale….vampire pale. I know vampire pale because I just watched New Moon last night.

We head down to the six floor….vampire pale son looks worse.

Fifth floor….his head droops to the side.

Forth floor….the son has passed out.

It all happened so fast. I didn’t really realize what was going on until the mother looked at the rest of us, trying to support her son and screams HELP ME!

Crap.

I don’t really know what happened after that. Someone stopped the elevator, I remember holding a part of him as we made it onto the forth floor. I do remember saying we should lay him down and I do remember screaming Call a code!

Call a code is hospital talk for What the *&$%#$!!!!!

I wanted to say call 911! But we’re already in the hospital.

Calling a code sounded a bit dramatic to me but really, he had just gone unconscious…out between floor 4 and 5. I no longer take these things lightly.

I kneeled next to him until I realized that when you scream out Call a code! in the hospital, that people take you very, very seriously. We were immediately surrounded by 20 medical people.

Well it’s nice to know everyone responds quickly.

Teenage son was now lucid and awake wondering why this crazy lady is next to him.

Teen Son Mom is crying. Teen Son Mom is stressed. They had just gotten discharged and Teen Son passes out in the elevator.

So I start crying….for Teen Son Mom. Because I know where she’s coming from. And because I too am stressed…..

and really, the last thing I need in my life right now is people passing out in my elevator. Note to reader…..if you are going to pass out, please stay out of my elevator….at least for a week or two.

I just want to go to Walmart.

I have taken the boxing gloves off tonight….

Because they are heavy, cumbersome, I think they might cause carpal tunnel and I no longer feel the need to fight.

It has been a day.

Samantha is on her third I.V. today. Her arms are swollen and puffy from failed lines leaking into her system. She is exhausted; bruised from fighting nurses and needles.

Tonight she is also comfortable, peaceful and sleeping.

Today I have confronted doctors, been on uber-high alert, questioned my judgment, questioned their judgment and held my daughter through her tried and failed I.V placements.

It has been a day.

But really? It hasn’t been a bad day, a hard day but not a bad day. Samantha now has a working I.V. and I feel like we have a new relationship with our medical team. She’s currently snoozing away and comfortable…such a change from last night.

It was a confrontational day but people ‘had our backs’ the whole time. We had a great nursing staff, supportive friends and our fabulous Dr. E pulling us through.

Times when I fight for Samantha and get positive results are never in vain. AND as a friend so wisely pointed out….the pancreatitis will resolve in time but most importantly, we are still seizure free.

I still feel like I will turn a corner and confront the evil seizure monster but I also think that if we were to have big, awful ICU seizure issues because of the wean, perhaps we would have them by now? Knock, knock, knock on wood.

Tonight I read through Samantha’s e-cards; sent by you all. She has so many we are decorating the inside of the door with them. It’s hard to feel defeated or deflated when we have some many wonderful wishes and people rooting for our girl.

That and I’m watching New Moon…giggle, giggle, giggle

Discharge day from the hospital is a party….

Whooo Hooo!!! We are outta here!!!

Emails are sent, family is called and bags are packed. Everything is planned in anticipation of being able to spend precious time at home.

Home….where you can pee without worrying who will walk in. Brush your teeth without being interrupted and spend time in a room bigger than 20′ x 15.

Home is good.

And I’m a big fan of a party.

So today, when we got the okay to go home and to plan the discharge party, it was so very disappointing to put the kibash on it all.

But somewhere in the last 24 hours, our smiley girl became a little peanut who was still in a lot of pain and when I woke her up and got her ready to go home, this became very obvious to me. She still has a lot of belly distress and perhaps we started her feeds too soon.

When Samantha started to show signs of distress, I insisted on a lipase test which indicates pancreatic health. Her lipase is now at 777, meaning we are moving in the wrong direction….up instead of down. Samantha was taken off her feeds and put back on I.V. fluids.

So tonight we postpone the discharge party.

It’s okay. I would rather postpone than host a party we aren’t ready for.

But it’s tough to be the party pooper….tell the doctors to slow things down….insist that she is not ready to go home when really all I want to do is go home, have a meal fixed in my kitchen, put my daughter to bed in her room and cuddle next to my husband.

Ugh, to be the responsible grown-up….so very overrated.

Gastrojejunostomy Tube (GJ tube)….try saying that ten times fast. I’m still working on one time slow. I should probably learn how to say it.

Because Samantha now has one.

Samantha’s belly pain and persistent pancreatitis has told us that right now, her stomach can’t really handle processing food. So, for the time being, Samantha’s formula will go directly into her small intestine where many nutrients are absorbed into the body. Bypassing the stomach will also give her pancreas a rest, which is good and necessary. Our only other option would be I.V. fluids for an extended period of time. The GJ tube gets us home.

Samantha is happier not having anything in her stomach. We’ve seen more smiles and great interaction. She is relaxed and doesn’t mind being repositioned or moved around.

The downside to a GJ tube is that the small intestine can’t handle a lot of volume. Samantha will receive slow drip feeds through most of the day meaning she will be hooked up to a feeding pump about 20 hours a day.

A year or two ago I would be really upset about Samantha being hooked up to a pump but right now a happy, comfortable, interactive girl trumps all.

Did I mention a happy, interactive, almost-keto free, seizure-free-for-three-days little girl trumps all???

Well it does…apparently our lovely sign and all your thoughts and prayers are working.

Samantha has received so many wonderful Children’s Hospital Cards from you all….well we just had to show them off; they now take residence on her door, with the sign. People stop to read ALL her messages…thank you.

We also got a special little present today from a special little family….a ‘frog angel’ pin for Samantha. You know how I feel about angels….and frogs (see December post). She is now wearing the frog angel pin on her pajamas. Hubby says she probably shouldn’t sleep with it on her pj’s….oh alright fine. The frog angel is now hanging over her bed, another symbol of all that is watching over Samantha tonight.