A Thread

Life isn’t for the faint of heart around here.

Last Friday was awful. We truly did not know where things were going.

J’s overnight recovery was miraculous. She is back to being the vibrant, cheerful, outrageous ,five-going-on-sixteen-going-on-ninety year-old that we know and love. What a relief!

Earlier today, as I was thinking about all of this this, and about what a difference a week makes, it happened again. Another twist: her new feeding tube stopped flushing.

As I gathered up the supplies to help Steve troubleshoot, my mind raced and wailed: You’ve got to be kidding me. We can’t do this again. Why now?? It’s only been a week…

We tried flushing with soda, hoping it’d break up whatever was blocking the tube. Please let it work, please let it work…No luck. This is not good….

Julianna, displaying her usual and perfect situational awareness, tried to take charge:

J: Text K, (our hospice nurse) – tell her everything!  Translation: This is not amateur hour, folks.

We told J to hold on while we did one more thing. I rolled her onto her side as we prepared to try a warm water flush, and SUCCESS! It flushed, and our few moments of terror were over.

It took a lot longer for my nerves to recover, and even as I write this, I’m still in partial fight or flight. We just never know what will happen around here.

Julianna’s life hangs by a thread. I like to imagine it a brilliant, sparkling, pink gossamer thread with a core of steel, but the reality is far less glamorous.

The ugly truth is that she is dependent on machines for vital functions. Things here hang not by threads, but by tubes made of rubber and plastic. And even with the best and most vigilant care, machines and tubes fail.

It’s like that for all of us, really. Those blessed with good health may never know what it’s like to need a machine to breathe, but we are all eventually confronted with the fragility of life. The difference can come down to an extra fraction of a second in the passing lane or a micro-deletion on a gene: we are all hanging by a thread.

Knowledge like this can fill us with fear and paralyze. It can also lead to more humility and more appreciation. Sometimes it does all of this – all in the same evening.

Hold on to the sweet and the good.

This week:

Julianna bloomed:

 

And played hide and seek:

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And tried a new look — Princess Rock Star Bunny:

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And, in case clarification is needed on my “five going on sixteen going on ninety” characterization:

J: When I’m 13, I will be a teenager?

M: Yes.

J: Will I be annoying?

M: I don’t know. Will you?

J: I think I’ll be a little annoying, but not as annoying as a regular teenager.

M: Why?

J: Because, you know, I’m, like, a princess.

Roller Coaster, Part II

The roller coaster continues.

Julianna has a tricky stomach. It’s the best way I know to describe it, because there’s really no medical terminology or explanation for the retching that has plagued us.

We took J home on Thursday. On Friday, she woke up and her stomach was not happy. She needed suction every minute and felt the urge to throw up almost constantly. It took three people to tend to her needs.

On Friday afternoon, it finally happened. She retched and aspirated – badly.

I have seen my daughter struggle to breathe many times, and it never gets any easier.

Through it all, Julianna was Julianna: brave, insightful, a great communicator.

J: Why did this day have to come? This isn’t enough to bring me to the hospital.

M: No – we’re not going back. No hospital.

J: And no NT.

M: I promise. No NT suction ever again. (NT=naso-tracheal suction – going through the nose to suction the throat and trachea)

J: nods. Can you put Cinderella’s carriage on my table? (J got lots of toy rewards for her hospital ordeal. She likes to make sure that her new toys feel welcome. She wasn’t about to let us to put them just anywhere.)

We got her through this mini-emergency, but the rest of Friday and most of Saturday was dicey. She slept restlessly. She needed a lot of oxygen, and her heart rate told me that she wasn’t comfortable. She went through periods of needing constant suction. She had a few more retching episodes, but luckily we were able to catch them in time so that there were no more aspirations.

And Julianna was still Julianna.

J: Mom, why did you cry yesterday? (Like I said, it’s not easy to watch your child struggle for breath.)

M: I just couldn’t help it, Julianna. I’m sorry.

J: Why did you look up?

M: I don’t know – it just ended up that way.

J: Were you looking to heaven and God?

Her bravery brings me to tears, but her spirit makes me laugh. After another dramatic retching episode, three of us stood around her bed, relieved to have dodged another aspiration.

J: Well, don’t just stand there looking at me!

On Saturday, J fell asleep before 7PM. I can’t remember the last time this happened, and I braced myself for a 2A wakeup.

It didn’t happen. J slept – solidly and quietly – until 8:30 the next morning. She woke up and the old Julianna back. Her eyes were rested and sparkling. The constant need for suction and feeling that she was going to throw up was gone.

I can’t explain it. It’s another miracle. We’ve had so many.

My mantra these days is “happy and comfortable.” Julianna has been through too much. Whatever happens, I want her to be happy and comfortable. Tonight, she is both.

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The dreaded IV. It didn’t go in the first time, but J was a star. “My vein did not cooperate,” she told me the next day. 

 

New day, new haircut. Everything is better today.

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Home…and Hope

As I write this, Julianna and I are in an ambulance. Traffic is bumper to bumper and everyone is exhausted. We need showers and we need food.

None of this matters: we are on our way home.

The girl who is never tired is asleep. She had a rough night but held her own during the day. She is clutching a new friend – a stuffed puppy named Hope.

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J and Hope Elizabeth. J added the middle name, but says “We call her Hope for short…” 

 

Hope is  DCH ‘s (Doernbecher Children’s Hospital) “Chief Canine Officer” , and a new addition since we were there last. I can think of no better name for a children’s hospital facility dog. We all need hope, even when things are uncertain and the obstacles are big. Especially then.

We have some things to work out. The G-J is in place (GOAL!) but we have to get her through this latest aspiration pneumonia. Her stomach seems unsettled, and I worry that she’ll aspirate again. The ends aren’t neatly trimmed, but we think we can manage. She’ll be so much more comfortable at home.

Tonight we take our princess back to her princess room. We’ll watch her like a hawk and hope. Always  — hope.

To the DCH nurses, doctors, X-ray techs, respiratory therapists, medical aides, Child Life and social services and everyone else who helped us – THANK YOU. You do amazing and difficult work. We are grateful. J says that you can all be in “the club.”  

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Home!

Roller Coaster

Good news: The G-J went in just fine, and Julianna was a champ. No sedation needed. Our ambulance ride home was booked.

Bad: Twenty minutes before the scheduled departure, we became concerned about some of the fluids coming out of one of her tubes. The medical team was also concerned, and an X-ray was ordered.

Good: The X-ray showed that everything was in the right place. Second ambulance scheduled for later in the evening!

Bad: Twenty minutes before scheduled departure (again!) J started looking queasy. She retched and aspirated a little bit. Not going home today.

We hope that it was a tiny little aspiration. We hope that it happened because her system was a bit unsettled from recent events. We hope the tube works and that we can bring her home very soon.

We’re all disappointed. We’ve been through much worse, but it still stinks. I hate being confronted with her fragility.

So fragile. Our miracle.

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Taken when we thought we were going home — the first time. 

Waiting

The good news: J’s tube is working now.

The bad: it still needs to be changed out.

We weren’t able to get on the schedule for today, so the initial plan was to come into the hospital for IV fluids and wait for a spot tomorrow.

This was disappointing. J was tired, hungry and thirsty this morning. She told me exactly this much and actually fell asleep for a while. Very unusual for J.

We decided to test the tube again, and it’s been working. The nutrition helped J perk up a bit, and it bought us more time. We are now planning to stay home another night and go in tomorrow morning for the tube change.

A G-J tube is not a permanent solution for feeding. Sometimes it lasts just a few days; sometimes it lasts months. In our case, it’s worked for 18 months. Miraculous.

They can be tricky to change out. It needs to be done by an interventional radiologist. Julianna will likely need some sedation, and this increases risk. Sometimes they are not able to get the tube back into the right place. I’ve always known that this was a possibility. In our case, there really are no other viable options for feeding: these are the stakes.

Julianna is doing pretty well, but I know she’s worried. We’ve promised her lots of big prizes for going through all of this, and her bag of friends is packed.

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As for Steve and me, we are waiting. So much of this is beyond our control: scheduling, transportation, whether or not a second tube will work as well, how much sedation J will need. When the stakes are this high, it can be terrifying.

None of us really have control, not of the things that really matter. Sometimes you learn this through a long, hard, painful process. Sometimes it comes in an instant, and things are never the same again. It’s not comfortable, knowing you don’t have control, but it’s the human condition. Things in this world are not what they are supposed to be.

Today, we just wait. God’s love for Julianna is undeniable, so we trust too.

We feel the strength of your prayers and good wishes. Thank you for each and every one.

UPDATE: Change of plan – we are going in tonight so that we can be officially on the schedule for tomorrow. Like I said, the schedule is out of our hands. Haven’t broken the news to J yet…

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It’s always a good day when J plays. After she got some nutrition, she hand painted a tree and a sky. J: It can turn into a river if it goes too low.

Prayers Please

Writer’s block has settled in. It’s been frustrating, but good because it reflects our stable, routine lives of late. Boring is sometimes marvelous.

It’s all changed, so here’s an update and request for prayer.

Julianna’s feeding tube (the G-J) tube stopped working tonight. Without it, we have no way to feed her or give fluids, so it has to be replaced soon — like, tomorrow.

This is not so simple. It means an ambulance ride to the hospital (we don’t have a way of transporting her for any long car trips) and getting it changed with interventional radiology. We’re coordinating with our hospice nurse, and she’s advised us to stay home tonight and let her make calls first thing in the morning.

Julianna asked if she’ll need an IV, and I was honest: maybe. There were some tears, and she’s scared. We promised her all kinds of toys (and maybe some visit from her old hospital friends), and she promised us that she would hold still so that they won’t have to put her to sleep.

G-J tubes don’t last forever. J’s lasted over 18 months, which is probably some kind of record. We knew this would happen one day, but as time stretched on, you forget. You want to believe that the happy, stable, good times will last forever.

Please pray for:

— Safe transport to and from the hospital. (J hasn’t been in a car for more than five minutes at a time for the last year). 

 — that they get us on the schedule early tomorrow and it’s a quick and simple change

 — that J doesn’t need an IV. Or if she does, they get it the first time

 — that this G-J works just as well as the first.

Thank you!!