Sleepy Day

Back running the show

Overheard this afternoon:
"why is my desk so messy? I didn't leave it like that!"
" I'm so behind on all my chores!"
"Mom, can I start the bath for Liam?"
"would you just rinse his hair for me? I want to do the rest"
And after my catnap earlier--"wow, Mom, you look so much better!"

She is climbing into bed now all showered and happy after a lovely time opening all the truly generous packages waiting for her. Thank you, everybody!

We are still working out one of her endocrine med doses (her water-balance (DI) medicine) which shifted post surgery, and she remains on some temporary medicine for various discomforts, but they are keeping her comfortable.

Hopefully she will rest well tonight without all those beeps, labs and vitals!

Coming Home This Afternoon!

Big night and huge morning

On her first walk in the hall to get hot-cocoa!

As C mentioned, Lu's drain was clamped yesterday to see if the resultant increase in fluid pressure would cause a leak through her nose.  It did not leak!

She still had headaches throughout the day, but we started to find that her headaches were only when sitting up or standing.  This is a sign that the fluid pressure is starting to increase appropriately.  

A neurosurgeon explained why the fluid was needed in the following way ( I made a few modifications):  imagine the soft spongy brain as a tiny boat floating in the skull in fluid (the cerebrospinal fluid).  If the fluid gets too low (which they did purposefully) then the boat (brain) will bump against the skull and cause pain.  Therefore as the fluid stops draining the fluid level will rise causing the brain to be more comfortable and stop hurting.  

The clamped drain was still in her back and kept leaking onto her bed and back.  The doctors decided to pull her drain out last night.  Still no leakage through her nose!  

This morning Lu woke up smiling and without a headache!  Amazing!  We are thrilled.  Lu is watching sprout playing with happies you have brought and waiting on a hearty breakfast she ordered.  She took a walk down the hall to get cocoa.

The plan is to observe her today for leakage of fluid and go home tomorrow!

Sleeping Beauty

Lucy spent the last two days in a continued haze of blessedly strong medicine, eating very little and usually in pain if awake.

Her pituitary medicines have been challenging to regulate due to post-surgery changes, but merely complicated to manage, not dangerous.

Her nurses have been kind and attentive, bringing scheduled IV steroids and antibiotics, pain medicines when she asks, keeping her stocked with ice-water and gatorade, taking her to the bathroom, drawing labs through her port so quietly she hardly wakes up, and many other cheerful services. Her doctors continue to be excellent, respectful of us and caring to Lucy.

Today her lumbar drain (the tube in her back draining fluid from her brain) was clamped in preparation for its removal; since no cerebrospinal fluid leaked from her nose (through the surgery site) over the course of the day, she was considered safe to have the drain removed tonight. The neuro team will then regulate her to make sure her brain's fluid cushion is intact, and she can go home likely Thursday morning.

We expect her pain to markedly decrease with the drain's removal, and even this evening with it only clamped, she talked and ate in a way she has not all week.

Richard is there tonight while I try to sleep for the first night at home. When my word-retrieval goes, it's time to realize the shift is over...

Despite the disorientation of this experience, we feel at home in the love all of you have shown us this week.

Out of ICU

Lucy's MRI showed her brain was safe enough to move to the neurosurgery floor on Sunday afternoon.

The scan held little information, as expected, on the success of the tumor resection, due to the nature of the surgical approach. She'll have another one in a couple of months to decipher that.

But we are grateful to be in a quieter, more private space, and happy to lose several irritating tubes and cords.

She still primarily spends her time sleeping between headaches, but seems more herself when she wakes up: she can eat small amounts, expresses herself well, and enjoyed changing into a cute nightie.

Likely the lumbar drain will not be removed until tomorrow, and her headaches will persist until that is removed, but Tylenol with codeine tag-teamed with morphine keeps her comfortable. After the drain is removed, she will remain in the hospital for observation at least another day.

Many of you have asked about visiting. She is not up for chatting, games or movies yet, and the room is very small, but her parents would be cheered up by a quiet 10 minute friend anytime!

Thankful

This morning we have much to be thankful for:
-Lucy's first MRI without sedation, due to the lack of sedation doctors around on Sunday. If she couldn't stay still for the hour-long scan, she would have to wait until this afternoon, but she did great, with lots of pain meds and an American Girl movie on. (Results not in). She even gave a smile when she came out because she knew she had met a challenge.
-A beautiful sky out the hospital window.
-The IV morphine that gave Lucy a great night's sleep.
-The endocrine medicines which, as usual, completely replace her pituitary hormones so that her body functions properly and her labs, heartrate, blood pressure, and breathing are all perfect.
-Three teams of very smart people (icu, endocrine, and neurosurgery) following every data point.
-Attentive nurses
- This fun blanket on her bed when she got back from MRI
-Presents! And the ten minutes of alertness to enjoy opening them.

MRI tomorrow

Thanks to lots of morphine, Lucy's day was mostly lots of sleeping, broken intermittently with pain and/or vomiting. Due to hospital overload, we found out this evening after waiting all day that the MRI will be tomorrow instead. She opened her eyes for more than a blink for the first time tonight, alert and sparsely conversant, and ate a little bit of dinner after a day without food (because waiting to be sedated for the scan).
Richard spends the night in the sleep room tonight to rest up for his 20 mile (!) training run tomorrow, in preparation for his October marathon. He says it's good stress relief...

I'll end with a lovely thought for the end of a Saturday that was mostly survived:

That’s why it’s okay to not be okay sometimes. His peace river is trenched low-down deep, and we dredge there in sorrow.
Amber Haines

Headachey morning

The night passed with the aforementioned noises, but I had forgotten about screaming babies, loud voices, and just how loud and persistent the beeps can be.

Lucy tolerated all that well until early this morning, when she started having increasing headaches.  We think there is a component of sinus soreness from the surgery.

The larger contributor is the headache from the lumbar drain.  The drain is in her spinal fluid to off-load pressure on the wound at her nose and prevent leakage through her surgical site.  I had forgotten from medical school that the brain makes over 400 cc of cerebrospinal fluid per day.  They have drained around 250 into the lumbar drain to keep the pressure low.  Draining that much fluid can cause a full-scale headache.

She is having opiate dreams and seems comfortable now.

She heads down soon for an MRI to see what is left of the tumor.  Our Neurosurgeon said it can look messy after a big surgery, so not to be too concerned if there is residue from the procedure.

[The photo is of Lucy with a bar of soap in her hand at a recent appointment.  We were planning to smack it at each other, or, more likely, at an unsuspecting nurse's face.  Ah, the coping mechanisms we employ!]

Night at the ICU

Wow, we have been relaxing in the ICU for the last few hours.  Lucy has had some pain, but it has been easily controlled with a few doses of pain medications.

Lucy enjoyed an unrestricted meal covering the spectrum of the carbohydrates - animal crackers, grapes, cheese ravioli, tater tots, and gatorade.  Her appetite was fantastic.  Yes, her parents were aware of her food order.  Meals in the hospital are all celebrations.

We are settling in for a night of interrupted sleep.  C will sleep in a special family sleeping room, and I will take the couch shift.  I like the reminders of my residency - distant bangs and close unremitting beeps, clanging of trash bins, doors opening and blood draws.  Should have a good post-call haze by morning.  (If you have not gone through residency, then this won't make sense, unless you have spent nights in the hospital.  I hope not.)

Still I am happy to have the chance to sleep in the room with a girl recovering very well from a big surgery.  

Finished!

All, we're happy to report that this is finished! We've spoken with both our surgeons now, and they are encouraged.

There were able to remove about 90% of the tumor and reopen the catheter.

They were not able to get the remaining portion of the tumor, because of bleeding that occurred. There was some reasonable blood loss, requiring a transfusion, but she did not have low blood pressures or other signs of severe blood loss.

The plan will be to monitor her in the ICU over night with a lumbar drain to help keep the cerebrospinal fluid pressure from getting too high, and leaking through their surgical site.  After a few days, they will remove the drain and ensure there is no further CSF leakage.

We are very happy that we will see her in half an hour or so.

Still doing well

The nurse just indicated that Dr. Wrubel was still in the process of attempting to extract the cyst.

Meanwhile, the boys are making bows and arrows with G. We're so grateful for their fun weekend of "Camp Spooner" with their cousins!

3 hours in...

Vague update by nurse just given. "things are proceeding well..."

Call us selfish for wanting actual info, but no more was forthcoming.

Still things are going well.

Thanks for hanging with us.

Update ENT halfway through

Just recieved another call.  The ENT surgeon who is working through Lucy's nostril to open one of the sinuses is halfway done.  Dr. Stathum our ENT will expose the base of the skull and then tag Dr. Wrubel our neurosurgeon who will go through the other nostril with a camera and start.

Lucy's Blog

Surgery is Underway

We just got the call from the nurse who will be updating us every hour or so during surgery.

Things are going fine.

They have placed a temporary lumbar drain - to keep the pressure of cerebrospinal fluid (CSF) from getting too high after the surgery.

They have also taken a fat graft - a small piece of fat from Lucy's abdomen that will help to patch the surgical site and prevent drainage of CSF from her nose after the surgery.  We both offered our fat (in as much quantity as necessary) to help Lucy.

Just went back

Lu was very chipper. Versed gave liquid encouragement. Her dad asked for some but was denied.

Surgery time planned for 4-5 hours.

We were amused to learn she would be getting cocaine during the surgery.  Our hyperactive ENT surgeon said she would be using cocaine. She rolled her eyes when I asked who it was for. Cocaine is a very good anesthetic that also decreases bleeding.

We will be updating throughout the day.  Thanks for your prayers and support.

Letter to Richard's colleagues with background

Letter from Richard to his work colleagues with background

Colleagues,

You may have heard rumors about an imminent surgery for my daughter Lucy.

Some of you may not know the background on this. 

Lucy (7)  was diagnosed with a craniopharyngioma in early 2009 when I joined the division. She has had surgery, radiation, a drain placed in the cyst, and finally chemo last October. On our last scan in June the tumor has continued to grow. 

Lucy has pan-hypopituitarism, small visual field deficits, and recent headaches. Despite these things, she is a healthy and active child with no cognitive or physical impairments. This morning she was asking about what she should do before her CT & pre-op appointment - run a mile, ride my bike, or do mommy's insanity workout video. If I were not a doctor, I would struggle to believe her diagnosis.

She is scheduled for a transphenoidal resection of the tumor at Egleston tomorrow morning. Our doctors give us good hope that they can either completely resect the tumor, or at least debulk it with fairly low morbidity.  They hope she could recover within a few days if the surgery goes as per the norm. I invite your prayers, good thoughts, and whatever else you can throw our way to help that occur.

Thanks for all who are helping me with coverage, being patient when I'm distracted (above baseline), and generally offering encouragement.  I love our division, especially at a time like this.  

We plan to give updates through a website Lucy in Atlanta, in case you want to see how it goes.

Thanks,

Richard