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.

It’s been a hell of a day.

That’s right…..I skipped ‘quite a day’…..

Passed over ‘heck of a day’….

And went straight to hell.

The good news is (knock on wood, knock on wood) it’s day two and no seizures.

The bad news is Samantha still has pancreatitis. Your pancreas secretes an enzyme called lipase. Normal lipase levels range from 10 to 150. Samantha’s lipase is 476; meaning her pancreas is working overtime and is still inflamed.

Pancreatitis is very painful and the only thing you can really do is give your belly a rest. We ‘rested’ her system a couple days ago but only for 12 hours. As soon as we started feeding her again, her levels climbed up.

So she’s back on I.V. fluids and the keto wean is on hold.

Samantha in extreme pain is just awful. She writhes, cries and can’t tell you what’s wrong. Today she has gone from sleeping, to crying, to sleeping, to crying. I am hoping this belly rest will help.

But again, the pancreatitis is a result of the diet so I do feel we’re doing the right thing in taking her off.

Hubby could not make it out of Budapest before the ash shut the airport down. Therefore he and a buddy hired a car and drove from Budapest to Rome….one of the only airports still operating in Europe.

Ah….the 12 hour scenic tour through Hungary, Austria and Italy. He should be driving through the gates of Rome as I type.

If all goes well, he will leave tomorrow morning, onto Boston and home tomorrow night. If Rome closes in the next 12 hours, he will probably take a boat to Northern Africa and fly out from there in the next couple days.

But to quote Scarlett O’hara, “I won’t think about that now. I’ll think about that tomorrow.”

This is from one of my favorite songs. It’s by Dido and called Thank You…..

Here’s what has happened in the last 24….

I left you all sad and scared but getting a handle on our unknown future.

Around 8:00, we had 2 visitors donning our wonderful sign telling the seizures to stay away! Our lovely friend Jenny, commissioned her sister who volunteers on the 6th floor to make this sign. Isn’t it lovely?

To have people deliver this, which verbalizes all I want for our little girl right now, well I just lost it. Poor Jenny’s sister, Mary….all I could do was just cry, and hug her and finally offer her a Milano cookie. Our sign hangs on the door of 845 warning the seizure monsters to stay away.

And day one of the wean…..they have stayed away. Samantha has had a good day. She is awake and smiley.

To make matters a little more interesting, hubby is still stuck in Budapest due to the volcano. The time of return has been pushed back later and later as Iceland continues to erupt.

Nothing makes me feel more vulnerable than a sick Samantha and a stranded husband.

Last night, hubby set up ‘command central’ to try and reschedule a flight home. He looked up flights, called the airline, was put on hold, and promptly fell asleep while waiting for a Rep.

His coworkers woke him up. They found him an itinerary.

If all goes well, Hubby will fly from Budapest to Bucharest (Hungary to Romania)….

To Rome…(only to spend a night in Rome)

To Boston….

To Us….

Two days, five cities….

Hubby’s co-workers are scheduled to return much, much later; Wednesday if the volcano behaves itself. They put this itinerary together for us….so he could be with us in the hospital. They did this while hubby, perhaps a tad overwhelmed, slept on the couch.

Thank you hubby coworkers and friends….really…thank you.

We still don’t know if he will get home but we have people pulling, rooting, finding a way to get him home….to us.

thank you.

Your calls and emails have been so wonderful. I’m sorry they have not all been returned but they are all read and will be returned…

In the meantime, thank you 🙂

P.S…..here are a couple links for Samantha….

To send her a Children’s Hospital Card

To light a candle

Today we came to the conclusion that it’s time to take Samantha off the ketogenic diet. It’s been a good run; 2 1/2 years on this super high-fat, seizure controlling diet. But 2 1/2 years of eating nothing but olive oil, butter, cream and an occasional teeny, tiny carb has had its toll on her body.

Her pancreas is inflamed, her blood is lipemic, her cholesterol is through the roof and she is very lethargic.

An ultra sound today revealed that her pancreas is in worse shape than 2 months ago….time to make a change.

We will start the wean tomorrow; slowly introducing her new, carb friendly diet.

What does this mean?

We have great seizure control on the diet and we have not had to make a med change. If she weans off, we have no idea how her seizure activity will be.

If she stays on the diet, she will have seizure control but it will continue to compromise her liver, pancreas and kidneys.

Great options, huh?

So tomorrow, 8:00 am, it begins. We will wean her in the hospital so we have access to the big-dog seizure meds and super-smart specialists should we need them.

I found myself at Super Target looking for new underwear after my conversation with the doctors. Myself and I mulled over this by the briefs…..

What are you afraid of?

That she will seize, and seize and seize and we won’t be able to stop it. That the diet was the one thing giving us an ounce of control in Samantha’s life.

What if it’s not? What if she has some seizures, we adjust her meds, and she does okay? What if, for the first time in 2 1/2 years, you could actually give her a healthy, blended diet, with food that is good for her body and not hard on her system?

What if she’s not okay?

Well what if she is?

Myself had a point….we just don’t know and we just need to try….for the health of Samantha’s very important organs….we need to try.

So I bought myself a pair of neon-green polka dotted panties. I will call them my big-girl, anti-seizure pants.

I will wear them tomorrow….and the next day….and the next.

Tonight there is no cutesy analogy, no superheros, no dead customer service people.

Just a note of thanks from us to you all.

I often blog as a reminder that we are not alone in this fight for Samantha’s health. Along the way, I have met, and through you all created, a network of support that is thick as steal, tight as glue and absolutely priceless.

Thank you.

We’re still on the 8th floor tonight. Samantha has looked better but she’s also definitely been sicker. She’s running a low-grade fever and the doctors are thinking a urinary tract infection is the culprit. We’re also doing an ultra-sound of her pancreas, kidneys and bladder tomorrow to rule out pancreatitis.

Home tomorrow? Keep your fingers crossed. At the very least, we’re hoping to be home on Friday when Hubby gets back from Hungary.

But thank you…..my absolutely priceless network of support. You are well……absolutely priceless.

We have been spoiled by the Special Care Clinic at Children’s Hospital. Our wonderful Nurse B who operates the phone, knows my voice, knows Samantha, knows our case and has a wonderful way of listening and calming me down when Samantha seems really sick.

She will also move mountains to get us in at the last minute.

We are very, very lucky. We also have our fabulous Dr. E. who I have adopted as yet another Mom in my life.

It takes a village.

When our little Gotham City is burning, I pick up the bat phone, send out the bat signal and viola’, there are our Superheros.

I have become very used to our Superhero service….and as a result, get a little snippy when the bat phone is not available.

Yesterday there was a little fire in Gotham City. Our bat phone was busy and wonderful Nurse B was out in clinic.

Crap-a-roo….it is hard to explain to others who have not seen Samantha crash, how quickly she can crash. When we call, we really need to talk to someone who knows her and because I know the bat phone is a privilege, I try to only send the signal out when we need it.

Although lately it seems like we need it pretty often.

So I call and get Nurse B’s substitute for the day. There is no Dr. E until the afternoon and Nurse B is seeing patients. No matter, their are other Superheros who can help save Gotham City.

What about Aquaman? Booked solid through the day….sick jellyfish.

Wonder Woman? Took the invisible jet on vacation.

Batman’s trusty sidekick Robin? Robin’s an intern but knows us well.

Surely, there must be some Superfriend who knows us and is available. I am flying the bat signal after all. But to a nurse running busy phones, every mom is explaining their fragile sick child and every case sounds dire.

Fortunately, one of my super powers is that I can be tad tenacious, perhaps a bit ‘firm’ and persistent when it comes to Gotham in trouble. (Substitute Nurse might insert another adjective but that’s fine). My continuous flashing of the bat signal got us through to Nurse B who of course, delivered superhero service.

Our ‘Batman’, our Dr. E., met us in the Emergency Room with her bat belt and a list of metabolic tests for Samantha. I greeted her at the door with hug and told her she can never, ever leave the bat cave.

We have also been told that the importance of responding to our bat signal will be relayed to every nurse who works the special care phones…..apparently we will be on a ‘bat list’.

Our Gotham can burn pretty hot….what would we do without our Superfriends.

Alas….so we wait…..

for lab results,

for a doctor,

for a room,

for a little direction on what the next 12 hours will look like.

Plans are moved, altered, canceled, tweaked, rearranged; new plans are made.

Success takes on a new meaning…..an I.V in only three tries, a comfortable child, a move out of the ER, getting that one nurse we really like, finding a leftover piece of dark chocolate in the bottom of my purse…..how long has that been there? No matter.

Lil’ Miss is a little puny this afternoon so we will be watching her from the 8th floor at Children’s….waiting for some answers and improved lab results as she re hydrates. Our fabulous Dr. E just came in for a visit.

We’re in good hands while we wait.