Thursday, October 31, 2013

Happy Halloween!   10/31/13


Last night, Nicole insisted she was hungry, so Nurse Lucy ordered her a plate of pasta in alfredo sauce!!! "Real food", Nicole says. Over the course of a movie and a half, she finished most of a huge plate.  Finally, success with food.

She slept well (when she slept) and is starting to be frustrated with being in the hospital. That's a great sign that her recovery is moving forward; makes the treatment team happy.  She is asking the staff if she can at least get out in a wheelchair today to look around. Maybe later after Physical Therapy and Occupational Therapy have their time with her, the team says she then may be able to at least wheel around ICU.

Her heart is trying to misbehave again since midnight: with slow heartbeat and some PVCs again. As I understand  it may be related to the medications she is on and adjustments are under way.
The parade of medical staff has begun this morning. They are so great with Nicole,  involving her at every opportunity, talking and laughing together. Nicole says she likes them...She is in heaven being able to watch TV and eat from bed.  Doesn't get much better than that.  However Nicole is making fun of me; my "office" and "bedroom" is in her bathroom..... LOL, she says "it's everything YOU need, Dad"  and had a nurse take a picture..


Nicole is taking a real balanced perspective about this, continuing to piece together what actually happened, and what the meaning of it all is.  Her angels have certainly been watching over her!

Her sister Alexandra (8yo) is doing pretty well.  Her class has made a get-well poster for Nicole.  Alexandra says "The other kids aren't asking too many questions, which is good, 'cause then I would cry".  "They ask me about it and I tell them: You know how you sometimes get mad at your big sister, and don't want them around you?  It's when they're gone or sick that you really know how much you love them".  Alexandra is looking forward to coming to the hospital soon to visit Nicole.

More to come...

Oh my, we were opening cards that she received last week for her birthday (before the event). In one of the cards was this...  A truth we should attend to.


In the treatment team rounds, the focus was on moving her more to eating on her own, and expanding her diet to supplement the "burger in a bag" that she is getting into her via the IV.  Appetite comes and goes.  There is some concern that her left lung is still collapsed, and not resolving quite as expected.  More x-rays....  The team was concerned that perhaps she aspirated some food, but after checking with the Mom who was at the restaurant they confirmed that the event happened before even bread was brought to the table.  So that's good news.  The team ordered some "percussive" types of therapy that loosen up the lungs, and more work with the wicked inspirometer (some of you may know the torture device used by ICU nurses to increase lung capacity: the patient has to sustain an inhale through the device at a certain rate.  Not fun)!
And then Physical Therapy showed up again...... and before you know it Nicole was walking down the hall!  She was so proud, as she should well be... leading the pack of staff trailing her, dragging her pole of IV pumps.  As an added benefit, the exercise prompted her heart to act out again, which helps the cardiologists know what to expect and treat.


Blessings continue to support her.  She was moved to hear from Father Okumu (who came to provide Annointing of the Sick to her, and who she knows from our time in Edmonds) and hear that he will be offering the mass on Friday for her.  




Wednesday, October 30, 2013

10/30/13, Morning

A restless night for Nicole. She slept better when she slept, but being more alert, she was pretty confused each time she woke up. She likes the nurses and does whatever they ask.  She has tried some thicker foods like applesauce and pudding. Still on TPN, though.
The treatment team will do rounds soon, I expect more info then.

Nicole is loving familiar stuff, and loves a quilt she had received from a family friend early last week.

Morning rounds continued with much the same overall plan. Doctors are speculating that the diagnosis involves an "evolving cardiac myopathy" and a conduction problem.  They are treating both now with meds.
The goal will be to transition her to oral, longer-acting medications instead of the IV meds.  Then she will move to the general floor.  The team is looking at waiting to do more studies until her heart is stronger; later in the week.

She was seen and evaluated today by Nutrition, Speech (to look at swallowing), Physical Therapy to determine her strength and need for a consult to Rehab, Occupational Therapy to look at her ability to do activities of daily living, Neurology, and somebody else that neither she nor I can remember.  Needless to say, she is wiped out.  Then she started eating today for real, which was a short-lived enjoyment.  I guess 4 days without food the stomach was feeling a bit rebellious; she now does not recommend pounding down the chocolate pudding.......  So funny, she said that anyone who doesn't like chocolate is "psycho".  LOL

Despite this, she is making great progress, and is filling in the gaps in her memory little by little.  It is so good to see the Nicole we remember coming back.  She is feeling so much better, had her hair brushed and braided, got herself a little cleaned up.  She now is mastering the wireless keyboard for the in-room computer / multimedia system and has figured out how to watch a movie on demand.

Neurology has come back and done further exams.  Thank God, they are saying Nicole is doing amazingly well given the short time since the incident.  They are not feeling she will need a head MRI!!  We're happy, and I suspect she is as well.



Tuesday, October 29, 2013

10/29/13,   Evening

It was sobering today to hear the treatment team talking about how they have had little opportunity to treat patients with the structural issues Nicole's heart has after a sudden cardiac arrest; most do not make it (apparently around 6%).  The uniqueness of all the details associated with Nicole's situation causes me to pause.  It certainly underscores the blessings that shower down on her.

It seems like today was a day of sharing stories with people involved with Nicole's event who stopped by, who were there from the time it started through the ambulances, to the hospitals, to the medical staff here. So many people praying for her, from people in Central America, to folks in Eastern Europe, across the Pacific, and here at home.  So much prayer, it's no wonder she is improving more rapidly than the treatment team initially expected.  So many people amazed by the way the events played out so that Nicole can be here tonight, sleeping almost like she was in her bed in her room (too many superlatives, am I getting mushy in my old age?)

And so, the team continues to entertain several hypotheses about why Nicole experienced the incident.  It seems they believe it to be a combination of a possible anomaly in her heart muscle along with a heart conduction issue.  The team is moving forward with addressing the cardiac conduction issue.  They have laid out short term plans for her stabilization and movement off the Cardiac ICU, as well as longer term plans, but the "in-between" time is less clear.  In the short term, Nicole has continued to respond quite well to the IV anti-arrhythmic medications, her breathing continues to improve, and her cognitive status is expected to continue to clear.  The team is looking to transition her onto oral anti-arrhythmics and if her heart beat remains stable, to then move her to a general floor in the hospital.  The goal at that point will then be to improve her cardio-pulmonary strength so she will be prepared for the surgical implantation of the defibrillatory (a significant surgery).

Nicole is communicating better and better by the hour.  She is helping the nurses in her care, and despite being extremely weak, does what she can to move and position herself.  She is so patient (a bit unusual, lol!) with her own limitations, but pushes herself to do more each hour.  She works to fill in the gaps in her memory, with what happened, how she ended up in this hospital, what her medical situation is; so much to grasp in the best of times!  While on no sedation or narcotics, she will take some time for those medications to clear from her system, and is taking a lot of healing sleep.

She is thinking ahead, very focused on school, not wanting to miss any more than she has to.  Interesting, in talking with the school, we found that there is the possibility of in-hospital tutors to help her catch up on her lessons while still in the hospital.  Additionally, during the time when she will be recovering at the house, the school district may be able to provide tutors to help her catch up.  I never expected to see the huge smile on her face that she gave today when I talked about those options.

A more restful night tonight, I believe.



10/29/13 Morning

Whew! What a night of ups and downs. Nicole started to wake up after about 9, and fought the ventilator tube. She understood when we told her it was helping her breathe, and needed to stay in, but each time she roused, she wanted to pull it out.  We worked to help her relax, listened to nature sounds (one of the Pandora stations on her phone), and read all the way through one of her books aloud....

The nurses were great, so patient, talking to Nicole through the struggle.  They worked with her meds; it was quite a dance.  Most meds designed to help her relax either suppress her blood pressure or her breathing; neither of which is OK.  They reassured us that the struggle would pass once the tube was out, but that some kids have this struggle. By 6 this morning she would look around occasionally, recognize us, and return to rest. When resting her breathing became more spontaneous, and we could see from the screen on the ventilator that it was helping her less and less, until finally the ventilator was not needing to help her at all.  The first concern (spontaneous breathing) was taken care of.  And then the second issue: her lung's ability to move oxygen into her blood.  Her left lung continued to be compromised, but she was doing well according to the monitors.  However, she has a bit of secretion in her lungs, and the more alert she became, the more she coughed against the vent.  A couple times her saturation levels dropped, but finally and her saturation levels stabilized in the high 90s.  Yahoo! Second issue covered.

And then her heart.  It appeared that the newer dose of antirrhythmia meds she was placed on earlier in the evening were doing the trick.  No acting out from her heart during the entire time!

Then by 9 she was alert enough to work with the team and was extubated.  That was quite a coordination between a half-dozen staff, some standing by if there was a cardiac event.  But Nicole followed directions, and it went well.  In fact, she was breathing well, with good, deep coughing, and able to use suction herself for the goop she is getting out when she coughs.When asked how she felt, she said "tired"

SHE SPEAKS!.

Mid-Day


Nicole has been settling in this morning.  She remembers her costume for Sat night, but little else so far.  The nurses are so gentle orienting her to the fact she has lost a few days, and Nicole seems to be taking it very well.  She asked about her sister to make sure she was ok.  Several friends came by briefly, as well as Michaela (whose birthday party Nicole was attending Saturday) and brought stuffed animals, bunches, and bunches of signed cards and posters from friends.  Nicole's face lit up to see them, and the cards and notes.  So, so many wonderful, caring people sending good thoughts and prayers toward Nicole.  It is heartwarming!

The plan today is to ensure she continues to breathe on her own, and that her heart behaves on the meds she currently has.  So far, so good in that arena.  She is working  on improving lung function, and coughing up the congestion.  They will do a swallowing test later this morning, and then she can begin having some of the water she is so persistently asking for.

Monday, October 28, 2013

10/28/13, Evening

It feels like it's been a week here, and yet it's only 48 hours. On the other hand, it feels like it was a few hours ago we took the call from Michaela.

Mid Morning the treatment team rounded on Nicole and included us in the discussion.  A couple items came up which were concerning to us but we were reassured that the issues were not life-threatening and not unusual with the length of time she had CPR.  It looks like there is likely some cracking around her sternum, and the lower part of her left lung is somewhat collapsed.  On the other hand, new information came out that she had been more purposefully responsive than thought earlier in the ED and ambulance prior to sedation, which all speaks to good neurological outcomes.  The team also discussed how they expect a more rapid positive trajectory for her recovery to independent breathing.

Sooo, the plan:  They do not expect to remove the ventilator until tomorrow morning at 6AM.  The muscle-relaxing medications will be stopped around 6pm, and the expectation is that she will take 12 to 24 hours to clear.  The treatment team will be looking for several issues prior to removing the ventilator.  One: they are looking to decrease the amount of assistance the ventilator provides and watch to make sure her brain is telling her body when to breathe and how much to breathe. Two:` they will be watching her oxygen saturation to make sure she is getting good distribution of oxygen from her lungs into her blood.  And then, Three: the reduction in assistance from the ventilator will put added strain on her heart, so they will be watching closely for changes in her cardiac function.

The team also expects her lung to re-inflate with a little assistance from laying her on her right side and also having a therapist provide some procedures.  However, it is more likely she will need to be awake and help with the therapies to get most benefit.  The condition of her ribs is not unusual, especially given how long she was given CPR. They will heal, but may be a source of pain to be watched.

The good news has come back about the team's concern regarding a virus infecting the heart.  The labs are negative and they have not seen an inflammation in the area around the heart.

The cardiologist "electrician" specialists are expecting that her predilection to have conduction problems with her heart will mean that she will need an implanted defibrillator.  This is a cool device that is placed totally in her body with sensors/electrodes to the heart. It monitors the heart function many times every second.  When it senses the heart is starting to beat irregularly or stop, it provides a shock that puts the heart back into normal rhythm! Amazing technology.  More to come on that as we see her progress through the next day or so.

During the day, Nicole behaved quite nicely with no acting out from her heart rhythm.  The treatment team started providing her with TPN (nutrition through her IV), and the plan is to move her to nutrition through an NG tube (tube into her stomach) tomorrow, pending her transition out of sedation.  I know she will be looking forward to getting her macerated steak and potatoes tomorrow!

Tonight, as the muscle relaxer medication is wearing off, the nursing staff are masterfully orchestrating a variety of medications to help Nicole rest and not be anxious while trying to avoid/minimize medications like narcotics which supress her breathing.  Nicole is a feisty one, and (given how she was in the ED and ambulance) she is likely be fighting to wake up.  That seems to be the course so far, and that feisty-ness will really help her as she tries to take charge of her breathing. On the other hand, it means she is fighting the breathing tube which she still needs..... So, we're playing her favorite (quiet) music, reading to her a little, to help her try to rest, relax, and wake up slowly.  The nurse, Trish, is so calm, quiet, she is making me relaxed!


In the real world, outside the hospital, Nicole's sister Alexandra is doing well, thinking a lot of her big sister.  Today, she found a heart-shaped leaf that she wants to send to Nicole.

Looking to be a long night.  Hang in there, Nicole! You're a fighter, but right now, try to relax and rest.
10/28/13, Monday, midday

Wow, what an amazing day this is turning out to be.

Met with the treatment team, and they are feeling Nicole is improving at a better pace than initially expected.  Her distal pulse (in her feet) is improved from yesterday.  Not only that, but the doctors and nurses can now hear her heart murmur.  This murmur is nothing new, and is part of the structural problem she has been followed for by her cardiologist here at the hospital for some time.  However, the murmur had disappeared after the cardiac event. This disappearance was due to the heart muscle being so weak in the area where the valve attached.  By the fact the murmur is returning, it is a signal that the heart muscle in that area is strengthening already.  Good news.  Given these and other positive signs the treatment team has decided to start warming her up already, rather than wait until tomorrow.  With the warming, they will begin tapering the medicines that relax her muscles, and so she may begin responding as early as this afternoon!

On the non-medical side, the way support is falling into place together is overwhelming!  We received calls from parents of children who attended her church youth group last night.  The youth leader let the group know of Nicole's situation, and the group of nearly 100 devoted their prayers to Nicole's health and recovery.  The parents tell of kids so deeply affected and wanting to express their support for Nicole.

We also found out that a number of Nicole's friends wore red today in support of Nicole and cardiac issues (like pink is for breast cancer).

And then, at the door of Nicole's room appears a new face.  She introduces herself.  It turns out she is Rebecca, the doctor who was sitting at the table near Nicole at the restaurant, who saw her collapse and initiated CPR!  She had talked with the mother who took the girls out for the party, and stopped by to see if it was ok to visit, and she actually works at the hospital!!!!  She relates how on Saturday evening she and her family had not intended to go to the restaurant the where the girls werel.  She and her family had changed their mind at the last minute (this is exactly what happened for the girls as well). Once there, her youngest, who loves Shirley Temple drinks, commented how Nicole had ordered a Shirley Temple "but hers was a LARGE one!".  "So we had noticed Nicole and were talking about her when she collapsed."  And then when Rebecca started CPR and called for assistance, the person coming to help turned out to be another medical provider, an X-Ray Tech; so Nicole had medically-trained people assisting from the get-go!  What an amazing blessing!

And then.....   I was hoping to have our pastor come by but he was traveling.  I really wanted a priest come by and give Nicole the Anointing of the Sick. I  looked on Google Maps for the closest parish and simply called their number, leaving a message.  I received a call in the morning from the Pastor of the parish and it turned out he was the priest at our home parish 8-10 years ago.  Not only that, but he was a priest Nicole particularly loved and he is to this day one of her favorite people.   He also remembered Nicole, even down to what her costume was on one Christmas Pageant!!  He was at the hospital in minutes to pray with us and anoint her.  He wants to come back to visit; I cannot wait for Nicole to be awake to see him.

Even Nicole's nurse who had heard of the coincidences from the start commented: "Something very special is happening for Nicole in all of this!"

Hard to take in all of what is happening.
10/28/13, Monday

Last night was a good night.  I'm sure it had something to do with the note and stuffed animals her sister, Alexandra, sent to her.

Nicole did real well off of the epinephrine and all blood pressure medications today.  Her blood pressure remains strong, but not too high.  The treatment team tells us this is a good sign overall.  The echo's have shown that her mitral valve is actually functioning better than it has in the past month, with far less regurgitation.  Apparently this is the silver lining related to the fact her ventrical is weaker and not contracting much.  But the valve closing more fully helps improve her heart efficiency; all in the right direction. So we are down from the 11 medication pumps from yesterday to only 6!  Yahoo!  She remains on the anti-arrhythmia medications.

The overall plan remains the same: keep her heavily sedated, core temp down around 33C, monitor cardiac function through the day.  The treatment team will round later in the morning, and will provide more detail.

Thank you all for the good thoughts and prayers you are sending Nicole's way.

Sunday, October 27, 2013

10/27/13, Sunday

What a whirlwind day: family and friends mobilizing to help and reach out.  Thank you all for your goodwill and support of Nicole!  Prayers and good wishes for Nicole are coming from all points of the compass.  Our parish got the word as well, and a Mass was said for Nicole today, Nicole's youth group was notified and rallied to pray as they met this evening, and our pastor will be coming to provide Anointing of the Sick. Thank you to all who were able to stop by.


Nicole was transferred off the Pediatric ICU today, into the Cardiac ICU.  Here is her entourage heading down the hall with her tower of med pumps and miles of tubing trailing alongside.

The treatment team has been adjusting both the medications for Nicole's arrhythmia and to better manage her blood pressure.  They also have pulled her temp down to the target 33C; that feels so cold.  One concern is that she may have had a viral infection of the tissue surrounding her heart which could have caused the cardiac arrest.  Although the viral studies have not all come back, the treatment team is giving her a medication that helps her heart fight any infection.

It certainly seems Nicole can hear us and the treatment team talk to her; they have us rub her hand or feet which seems to calm her during procedures.  Her blood pressure seems to spike at times, and then when we talk to her and rub her hand or foot it goes down.

The treatment team has pointed out some encouraging points regarding Nicole's neurological signs.  She has good reaction to light in both pupils now, and before she was so heavily sedated she responded to pain from her procedures in the Emergency Rooms.  She also coughed when the trach tube was moved, and tried to breath spontaneously at the first Emergency Room when she was being stabilized.  They tell us that gives encouragement for the time when she will be warmed up and sedation reduced in a couple days.

I had time to run out and take a little time with Nicole's sister, Alexandra. She is being a real trooper.  She understands more about the cardiac situation than most should at her age.  She had been joining Nicole for her cardiac followups and having her own cardiac workup with the same doctor to rule out a similar disorder.  Just 3 weeks prior Alexandra had received the news her heart is just fine.

We have settled in for a night of waiting and watching.
Midday 10/27/13

In reflection, we are so blessed through this crazy time in so so many ways.
Blessed that this happened when and where it did. Nicole was in a busy restaurant, with courageous friends/family, and a doctor so close to start CPR within minutes and truly save her life. It could have happened earlier that day when she was home alone, or a time when she was babysitting her sister, or out walking to a friend, or even at the house with us, for that matter. Nowhere else would she have had as rapid and professional response as she had with her friends at the party.

And then to have friends around her who love her so much, who were so calm, so organized, with several calls to 911, managing the people around her.  And then her friend Michaela who stayed on the phone with me from just after it started all the way through until she was in the ambulance. That helped give such a clear view of what was happening it allowed us to get the things done and head off to help Nicole.  Thank You!
Early morning 10/27/13

Nicole's heart initially did well without the need for rhythm-stabilizing meds. Her heart was beating regularly, and the treatment team worked on maintaining good blood pressure.  She remained on the ventilator with sedation. The cardiac workup was puzzling, as there were not the typical signs of a viral infection which could have caused the arrest, although the team would continue working on that avenue through the day. An echo showed no significant changes in her pre-existing heart enlargement or mitral valve issue (for which she was already being followed at Childrens). Thankfully she had been in regular follow-up with a cardiologist at Childrens for a structural abnormality of her heart.  Her most recent visit was just 3 weeks prior to this, so there were plenty of records against which to compare her current clinical findings.  However now there is a significant change in the function of her left ventricle, and her ejection fraction is under 30%. The heart is not contracting as strong as normal.  Additionally, there is concern about the effect of the cardiac arrest on her brain. So the plan is to heavily sedate her, keeping her on the ventilator for breathing, and cool her core temperature tonight to reduce any trauma to her brain due to anoxia that may have occurred during CPR.

This worked well through the night.  Unfortunately in the morning, her heart began acting up, with a number of rhythm irregularities. A code was called, but thankfully her heart returned to a sustainable rhythm on its own before the team could intervene. This is actually a blessing, as the treatment team believes this revealed the source of the cardiac arrest, which allows better diagnosis and treatment.  With this information the doctors were able to start her on strong medications to manage the rhythm of her heart, and they appear effective so far.
10/26/13

The evening started out fun for Nicole, dressing up for a Halloween-themed Birthday party with her close friend and a number of other girls. Nicole was striking, dressed as she called it as a "Victorian vampire".  Along with the birthday girl's Mom, they all went to a local restaurant for dinner.  


Nicole had been feeling fine, just having kicked a nasty cold. After ordering their meals, before dinner was served, in the midst of the chatter, Nicole suddenly collapsed at the table, she had experienced cardiac arrest! As the Mom rushed to help support her, a woman at a table nearby came to help as 911 was called. The bystander turned out to be a pediatrician! She monitored Nicole's breathing and pulse, but shortly after laying her on the floor Nicole required CPR. The doctor and a helper administered CPR until the EMT's arrived. 

The EMTs restored reasonable cardiac rhythm, put her on a ventilator to help her breathing. Nicole was then transported to a nearby hospital in Edmonds where we met up with her as the ambulance was parking and she was being moved from the ambulance into the ER. 

Nicole was stabilized there briefly, then when she was safe to travel with an automated ventilator, she was transported in the ambulance to Childre's Hospital where they started testing, making sure her heart was safely beating in a steady pattern. She then was heavily sedated to help her start her recovery.