Happy Thanksgiving!
11/29/13

What a great day!  This past month has had plenty of scary times, and yet been chock full of so, so many things to be thankful for.  Nicole has said that this is "the most special Thanksgiving ever; I made it through the cardiac arrest!"  I have to agree with her and give thanks for all the blessings that have allowed her to make such a remarkable recovery.  And thankful too for the multitude of friends and family who have sent all their supportive thoughts, prayers, and help her way.  I'm sure this has been why Nicole is doing so well. The support has been heartwarming and overwhelming. Thank you!

Nicole gets stronger every day and has gained almost 10 pounds since the cardiac arrest.  Her heart appears strong and although it is difficult to tell, it seems her device hasn't had to pace her heart so far.  It will be good to meet with the doctors next week to see how they think it has gone since discharge from the hospital. She is in good spirits and is taking to her school work with more enthusiasm than ever!  She is working with her tutor who is developing a plan with her teachers to help Nicole integrate back into school. One of the Vice Principals from Jackson H.S. called to talk with me about her plan and is helping to put me in touch with the right people.  I'm glad Nicole has made such a good connection with the tutor; they have quite a bit of work ahead of them.

Monday will be a full day for Nicole with over 7 hours of neuopsychological testing.  Talk about a marathon!

11/24/13

Nicole is gaining strength, no backsliding..  This week she has met with her tutor from the Everett School District..  Nicole was surprised when they met: it turns out that she knows the tutor from her 4th grade Tech class!  She says "she is not at all what I expected, she is a lot of fun, and we work well together".  She will come a couple times in the Thanksgiving week, and has collected information from her teachers.  Nicole is a bit overwhelmed with her homework ("I just hope I can remember everything I need to"), but also is looking forward to the challenge.

Nicole received her monitoring equipment in the mail.  This monitor seems to provide a couple functions.  One is where she holds an antenna over her implanted device, let's it sync, and it will send detailed information back to her cardiologists.  The other function seems to be a monitoring of sorts.  The monitor has to be placed within 10 feet of where she sleeps, with 24-hour power and phone connection.  We will learn more about it in our meeting with the Electrophysiology team in the week after Thanksgiving.

Today Nicole and I walked out into the neighborhood; she made it 9 houses and back.  She was beaming with the encouragement from some neighbors.  Good to see the progress!  She is pleased with the surgery site which is continuing to heal nicely.  She can't wait to have the dressing/steri-strips come off in the coming weeks.  She is also doing well organizing her medications and can explain what each of them does.

11/19/13

Progress continues. We now know the name of the tutor engaged by the school district, just awaiting contact info to arrange appointments. Nicole is trending toward a more positive outlook on this whole tutoring adventure.....

On the other hand I think her increased exposure to friends on Sunday at church and youth group and visits from concerned friends and parents has made the severity of her event sink in. As I'm sure would happen for anyone of us, Nicole is worried about it happening again, or waking up only to find she has bigger gaps in her memory.  It makes sleep very hard for her right now.  And she asks for reassurance, so hard. It is good to know, though, that from a cardiac perspective, having the implanted defibrillator gives her a margin of safety that the rest of us don't have.  This is not something I would ever have wanted her to have to ponder on at this point in her life.

11/21/13

It is wonderful to not have much to share. Nicole continues to progress and was able to go shopping yesterday. A very different experience than when she wanted to go shopping with me a week ago. That time she lasted about 10 minutes in the store and slept the rest of the day. This time she and her mother went to Ikea! They took a shortcut to get through the area they needed and then headed to the restaurant. Nicole's appetite continues to grow she downed noodles, rice, Swedish meatballs, soup and pizza. As you would expect she was physically wiped out afterwards and slept until evening time but was excited about her progress.

And then we made patacones with her sister, polishing off more than two plantains! No wonder her weight is improving!

I've connected with the school district and I spoke with the tutor who is starting with her tomorrow. The school district will send the tutor out twice a week for about an hour and a half each time to guide Nicole through a fairly independent learning program. I look forward to seeing how that goes. Nicole on the other hand has mixed emotions about having to do school work (which is no surprise).

Looking forward to Thanksgiving this year, as we have so much to be thankful for. God has clearly watched out for Nicole and been involved in helping us navigate through this crazy time. Nicole's grandparents will be coming up from California; it will be the first time they've seen her since before the cardiac arrest.

11/17/13

Nicole continues to make progress. She is eating tons, and gaining back the weight she lost in the hospital. She successfully made it up the stairs again this weekend and is excited to be sleeping on her own bed now. Her stamina is improving and she pushes herself to increase her walking. While that is coming along

slowly, it is coming.

She was really looking forward to making it to church and her youth group today. The rousing welcome they gave her was a bit overwhelming, but left her grinning from ear to ear.

Her swim coach is part of the youth group as well and has extended to Nicole the opportunity to participate in the swim team in a number of ways even though she wont be able to compete in the foreseeable future.  Nicole was happy to get her swim team pictures back (taken just prior to all the crazy events).

Unfortunately, we have not heard back from the school district or school counselor about the home tutoring program. I will go meet with the counselor in the morning to see if I can move things forward a bit.

11/14/13
A special day for Nicole. Her first regularly scheduled follow-up (not urgent care...) AND her Grandmother's birthday. Nicole's Primary Care doctor removed the dressings on her surgery site. The doctor was quite pleased to see the way her incision is healing. No sign of infection. Her heart is ticking along fine.  Nicole is in good spirits and working to improve her stamina and range of motion with her left arm (impacted by the ICD placement).

Nicole made it out again for a walk in the neighborhood and is committed to working on her breathing exercises to restore the full function of her left lung.

Waiting to hear from the school district about the tutoring; collecting the class work from her teachers to start the process to help her return to school.  Heard from the neuropsychology group at Children's; they are happy to hear she has had testing in the last couple years against which to compare her current function.

11/13/13

The changes Nicole's treatment team have made to address her headache and nausea seem to have hit the mark.  Today she is a different person, more perky and HUNGRY.  Incredible appetite: today she had an early morning snack of beef stew and steamed vegetables.  Then breakfast of a huge ham sandwich and salad. Then a lunch of a big bowl of beef stew again and a bunch of bread. Then a snack of a bowl of noodle soup and chicken soup.  Then dinner of a chicken breast, rice, and broccoli!!!  This is the Nicole I know and love, crazy food and all!

And she made it up the stairs to check out her room and choose her own change of clothes.  She had to rest several times on the way up the stairs and looked like she she had just completed a 500m freestyle by the time she got to the top, but was beaming from ear to ear.  She is taking charge and learning about her medications as well. Tonight she was able to explain some of them to a friend.

What a blessing to see her coming back to her snappy self.  We heard from her counselor that the School District should get back to us about home school support before the end of the week.  She is really looking forward to that.  We will have surgical and lab follow-ups to close out the week as we work on helping her improve her stamina.

11/12/13

Yesterday was a bit rocky. Sunday night Nicole had nausea and a splitting headache. There wasn't much that seemed to help her: sitting, laying down, heat, cold, meds. She really tried a lot of different foods, beverages, but really chicken soup was all that seemed palatable to her tummy. Unfortunately nothing helped with her headache.

Monday morning I took her in to the doctor, both for scheduled follow-labs and to be seen in urgent care for her nausea, headache. The poor Medical Assistant that was doing triage turned as white as Nicole when we summarized her recent medical history.  I don't think she was used to hearing about kids with Nicole's issues.  After a flurry of assessments, it turns out they think the symptoms are due to her medications, not some other serious process. Poor kid was worn out after getting rid of her breakfast while the nurse was trying to draw blood. Nicole wasn't at all happy with being wheeled around in a wheelchair during this. Once in the car finally she acknowledged it was probably best to have the wheelchair: "I guess I'm a little tired...."  We contacted Children's and after her cardiologist teams talked, they decided to reduce one of her meds. This seemed to help by Tuesday afternoon.

Nicole slept much of the day, but by the evening was advocating to attend a service at church for the sick.  I took her with the understanding we would leave when she got tired. Amazing service, huge attendance, standing room only. Luckily we saw a friendly face who had room for us. Cool that a group of people from an East-side church prayer group were in attendance and asked about Nicole; neat for them to see that she was at the service.

By this morning, Nicole's headache was back with a vengeance. Another call to Children's, more consultation, and another medication adjustment.  This time the made a further reduction in the dose of one medication and switched a couple other medications so they aren't taken at the same time.  Nicole was strong through this and went for a short walk with Carl.  She was pretty tired after walking down the street past a couple houses, so came back and slept soundly.  She is taking seriously the recommendation from her treatment team to increase her food intake as well as increase her water intake to about 3 liters per day.  Luckily she likes water and hit her goal by evening.

We had a little scare: we gave her an extra dose of one of her medications this evening.  Quick calls to poison control and Children's got some reassuring answers in short order (I continue to be pleased and amazed with the quick and thorough response of the treatment teams at Children's).  Poor Nicole was pretty scared but was finally reassured that she wasn't going to have to go to the hospital or get poked with a needle tonight.

So, it's off to the drug store for a medi-set tomorrow, and Carl created a better medication monitoring sheet.

11/10/13

Thankfully Nicole's recovery continues on a positive trend. This weekend seems to be the time to take a breath before getting into the flurry of fellow up appointments.  We hit the ground tomorrow with fellow up appointments starting on Monday, and pretty much every day thereafter for the week. Can't wait to get her set up with the hardware for remote interface for her device.

I think Nicole is a bit surprised at the amount of reconditioning she is facing. But she is taking it Yesterday she wanted to get away from the house, so we went to the store. She enjoyed the time but was tuckered out after 15 min of standing. Of course, she didn't want to stop, but we did. She slept over 4 hours straight afterwards.

Then out for a walk today: down the street about 5 houses and back.  Had to slow her down at first, then we set a pace that wasn't leaving her too dizzy.  She is a trooper!

Onwards and upwards.

11/8/13

Starting to get into a routine; it's good to have Alexandra, Nicole's sister, home as well.  She had been staying with friends during the ordeal.  She has posted drawings, welcome-home posters, and cards she and her classmates have made all over the house.  Unfortunately, some are decorating Nicole's room upstairs, and Nicole won't be able to get up there for a little bit.  It will be a nice "second surprise" as Nicole progresses.

Of course, nothing comes without some bumps and bruises.  Like washing her hair.  When she left for the party on 10/26, she had done it up in a bun, with lots of gel and hairspray.  One of her visitors had tried to brush it out and braid it at one point in her hospital stay. But now, trying to wash out two weeks of  "stuff" and tangles, was a bit of a chore. One which Nicole wasn't too excited to undertake.  Funny how the little things can seem so large; when considering what the last two weeks have been.

Medically, Nicole is very stable.  The incisions are doing fine, no issues there.  Nicole is managing pain well and feeling pretty good in spite of the procedures she has been through.

Being at home is different than at the hospital in many ways.  Nicole is doing well, working to be as independent as she can.  Have to develop new routines of childcare, appointments, and managing a household again.  At least we are all sleeping better now and an anonymous kind-hearted soul had cleaned up all the fallen leaves and mowed the lawn! Thank you to whoever did that!

We have started the discussion and paperwork with the school to have a home instruction assessment.  Looking forward to making progress on that in the coming week.

11/7/13

Nicole is home!  She is loving it to be in a familiar environment without all the monitors, IV's and wires.  She is not yet able to navigate the stairs but can get around the house with a little assistance.

Her medications are somewhat overwhelming.  She gave me ideas about creating a tracking sheet for her many meds: some daily, some twice daily, some three times daily, some as needed (not to exceed a certain amount), and several with dosing changes after a certain number of days.  Holy Mackerel! We think we have a pretty good checklist created now, so between the checklist and setting reminder alarms on my phone we should be able to stay on top of her medication regimen.

Her sister is beyond ecstatic to have Nicole home; she said it was scary to see her in the hospital.  She is a trooper too and made a cool welcome-home banner for her.

It is exciting to see her progress and her confidence.  She has been one who really struggled with needles but now to see her help with dressing changes and checking her sutures on her incisions in such a matter-of-fact way is inspiring.

The treatment teams are closely monitoring her blood work, heart, and device function.  We will be getting a wireless interface for her ICD (implanted cardiac defibrillator) in the coming week.  It will use the land-line communicate on demand to the cardiac device team to keep them/us posted about Nicole's cardiac status.  They will not adjust Nicole's device remotely, however, as they want to make sure she is in a medical environment when adjustments are made in the event of something going awry.  It is comforting to know that her status will be viewed between visits, though.

The Education team at Children's has been invaluable.  Nicole was not sufficiently stabilized to begin school work at the hospital, but the education team has been closely involved in her progress and communicating a detailed plan with Nicole's school counselor.  The treatment team have proposed a plan to the counselor involving individualized assistance at home to help her get up to speed.  The team has also decided she will need neuropsychological assessment to inform her return to school plan (scheduled in several weeks to allow her to further recover).  I had not realized such support is available from the Everett School District; very nice!

11/6/13
Day after surgery.

By all accounts Nicole is progressing well. The pain meds help her with incision-related pain so she actually got some sleep last night.  This morning her pulse is back equally in both feet and she is getting good blood pressure.  She had a chest xray to take a look at the left lung as well as the lead placement for the device.  The device team came to assess her and said that the leads are in the right place and haven't shifted.

The device team did a test of the device, pacing her heart for a brief period.  Everything seems to be working well, both in terms of signal detection and pacing.  The whole thing about the device is a bit mind-boggling.  One thing gave us quite a shock, particularly Nicole:  When they initiate the wireless interface with the device it makes a high pitched buzz/whine from inside her shoulder!  You should have seen my and Nicole's eyes!  And then the nurse put in the parameters for the pacing cycle, tells Nicole: "You're going to notice your heart rate pick up speed and beat a little harder".  She presses a button on the screen and bingo, the change to Nicole and on the monitor is clear.  Still trying to get my head around this.....

The treatment team is talking about discharge sometime today, although there are still some details to get worked out.  There are a dizzying number of follow-ups to be had, as she now has three separate cardiology teams: one for the device, one for the valve issue, and another for the cardiomyopathy (heart muscle issues).  She also has a pediatrician and an internist.  They also are wanting to get a neuropsychological assessment to assess current cognitive function and to track recovery.  We will have that scheduled in the next several weeks.

PT has had her out for her morning constitutional and given her a clean bill of health.  They are expecting 2-4 weeks to get her strength back, but other than some restrictions on the movement of her left arm and lifting restrictions for two months (to avoid disrupting the placement of the device) she can slowly return to activity.

11/5/13

Today is surgery day!  Scheduled first at 8:00, then last night switched to 10, and then as I was getting on the road at 7:00, received a message that she was bumped to the first case today, and back on at 8:00.  Good thing Michele was there to escort her; but I was able to see her as well.  She was in good spirits, joking with the surgeon and anesthesiologist even before they gave her the happy medicines.  The doctors say the procedure is anywhere between 2 and 4 hours depending on the size of her veins and the complexity of the vein structures.

Thank you folks for all your thoughts and prayers.

Alexandra has such a wonderfully different way of seeing things!  The other day she and I were walking from Nicole's room in the Cardiac ICU to the cafeteria and she suddenly said: "Daddy, I just figured it out!  The rooms have a lot of windows so the nurses and doctors can look in to take care of the patients.  There are even windows at where the nurse sits to see both rooms. And a window between the rooms. And the whole front has a sliding glass door to see in.  That's why they call it the 'I See You' (ICU) right?"  You know she is really right; that's the point of their design of the unit and rooms, after all.

One more hurdle successfully navigated.  Nicole went in for surgery around 8:00, and came into recovery shortly after noon.  The surgeon said that the process went well, but spent some extra time working on the placement of the leads in her heart to ensure they both provided good acquisition of the electrical signals as well as good placement for both the pacing and defibrillating functions of the device.  In the end he was very happy with the placement and input levels.  While in the OR they induced ventricular tachycardia and make sure the device delivered the shock it was supposed to, and all went as planned.

Now it is a time to wait, let her get through the post-op pain, track her vitals.  Tomorrow they will do some more xrays to make sure placement has not shifted and will test the device.  Once we sail through those hurdles, then it's off to home for recovery...

11/4/13

Rounds today were busy, and overall a repeat of the good news.  They said that her left lung is improving, and there's less fluid in it.  They are a bit concerned about her heart rate dropping into the low 40's during the night and are having a closer look at it.  Discussed this with the surgical nurse who will be following Nicole's implanted device and she said the device does have a pacemaker function, and depending on the settings they all decide upon, might kick in during those episodes.

PT found that Nicole's endurance is pretty thin.  She is definitely getting her exercise when she walks and stairs seem to be a bit of a stretch for her right now.  So they will come work with her after the surgery and prior to d/c to put together a plan for recovery.

Fr. Okumu came by to see her again today; she was so happy. She says "at least I can talk with you this time, and maybe I'll remember us talking!"

She is eating well, anything with red meat she can get her hands on... LOL.

So, she is scheduled for surgery tomorrow at 10.  Today is a day for gathering her strength.

11/3/13

Busy day.  Started on the Cardiac ICU, but in a "stepped-down" level of care.  The treatment team provided a bit more perspective on what they called her "remarkable progress".  They said her heart was at about 16% shortly after arriving, and within 3 days went up to 25+%, then 5 days after arriving up into the 30% range.  Now they say she is at baseline function (which was in the 40% range) compared to her "pre-event" tests!  What great progress!   She is very pleased with herself.  Had a nasty headache, which the treatment team is saying was likely to the changing medications and blood chemistry.  But that is all better today.

She is weaned off all IV medications and is stable on oral medications now.  The team then transferred her off the Cardiac ICU onto the Cardiac Surgical floor in preparation for her surgery in the next day or so.  While she needs to be on a cardiac monitor at all times, especially when on her walks, the frequency of PVC's appears to not increase into an area of concern for the team.  So Nicole was up and walking with staff several times today.  Quite a different picture from just a few days ago with the nurse carrying just a single piece of equipment instead of pushing a pole with 6-8 IV pumps on it.  It is so, so great to see!

Long talk tonight about her pending surgery and implantation of the device. Nicole has a really good grasp of the risks and benefits.  She says "I understand it is to help my heart in case I have another cardiac arrest and my heart stops.  I appreciate that."  She is concerned about the surgery and whether it will go well. She is confident in the doctors and has a strong faith that she is watched over by a caring God who has intervened on her behalf already, and by Mary, who is her intercessor to God as well. The maturity of her faith is humbling.

It seems Nicole has memorized the words to the two songs on the blog from a couple days ago.  The nurses are tickled with her  playing them or showing the videos off YouTube.  And Alexandra particularly likes the Mandisa song from the post (as well as another named "Stronger") and was singing them at the top of her lungs with the window rolled down on the way to the hospital today....LOL

Nicole is experiencing a bunch of new things at the hospital.  Little did we know that there is a "shower in a bag".  Apparently you microwave the bag, put on the shower cap, and viola! shampoo away..... Hmmmmm  Not sure it's going to make it into the shampoo section at your nearby salon.  Nicole had mixed feelings about it..

Nicole is craving burgers again/still.  Apparently she is on her own version of a cardiac rehab diet of steak, rare meat, burgers, and bacon.  I hadn't heard of that particular diet, but I think I'll have to look into it for my own health!

11/2/13

Slept well last night, quiet.  In fact, had to remind her to shut off the TV and try to sleep.  No alarms on the telemetry during the night.

This morning at rounds the team is far smaller: only three staff instead of the 8 or so.  They are pulling her off the IV nutrition and have given her free rein to eat anything she wants.  So it's a burger for brunch (she asks for it to be as rare as they will cook it).  She is looking to get her neck IV removed today and hopes that means she can eat anything she want.  She is so eager to be done here!

Amazing progress. The docs were a bit puzzled when I asked about changes in her ejection fraction in the last echo, and after reviewing the chart say she appears at baseline compared to pre-event followups with cardiology here.  I'm a bit unclear on what her function is, but will follow up with her cardiologist. Regardless, if they aren't worried, then it's a fantastic improvement in 5 days since she has been "back" with us.  I think their words were "remarkable recovery".  Thank you all for the prayers!

Nicole tells me to say "I'm feeling better, doing great, getting a lot of tubes out. I'm looking forward to getting out soon. I'm looking forward to eating stuff I really want to, steak, burgers!"

Life is good, she says. Got her bacon burger, and made short work of that, and a salad. I think she's coming back!

Nicole is on target for surgery Tuesday for the defibrillator.

Nicole has done well today. Walked around the Pediatric ICU, and the Cardiac ICU.  She was pretty wiped out afterwards but what a great job.  She got all the IV's out today which was great at first, until she found she needed a new IV... Arrrgggghhh!   She used to have a real tough time with needles, but she did a real good job with it this time.  

A henna tattoo from her friend, a visit from her sister, a dinner of steak, and she is feeling almost normal.  

11/1/13, Evening

In many ways today was "routine": miraculous recovery continues.  In morning rounds the treatment team is focused on tapering IV meds and transitioning to oral medications.  They are really interested in her increasing her food intake as well which will allow them to eliminate the IV nutrition.  The going is a bit slow on the eating part; her stomach is taking it's sweet time to get used to food again.  She is trying many different kinds of things: a nibble here and a nibble there.

Nicole is really, really liking her nurses.  They are coaching her on how to talk with the treatment team in the morning about food choices.... You see, Nicole has heard that there is a 24-hour Starbucks in our building here...So, they are consulting together about which beverages will meet her nutritional needs and avoid the caffeine..  Unfortunately, she found out she can't have a viente green tea frap with whipped cream...  But that still leaves a lot to choose from.  So her Aunt brought her a double chocolate frappacino!  Was good, but couldn't finish it as it went over her liquid allotment.... BUMMER!

Physical Therapy is happy with her progress: she walked the whole ICU twice today.  And then when they moved her room, she kept walking back and forth (with a couple staff assisting) while they readied her bed.  She is a bit bummed losing the view from the old room.

She is so proud of her walking and is looking more and more like her old self as the day progresses.  OT is happy too.  As Nicole put it, she now can maneuver a fork and spoon almost like she had used them before!  No more food up the nose!

Nicole met one of the school teachers working here at Children's today.  Kati is very helpful, and is going to talk with Nicole's counselor to coordinate assignments.  Nicole is not likely to go to the schoolroom here in the hospital yet, but may get 1:1 tutoring.  Hopefully, she won't have to be long in the hospital, and can transition to working at home quickly. But if not, she is excited about learning in this new setting.

So, talking with the teams about what it will take to get discharged..... The treatment team has really struggled to clearly identify what was the cause of her cardiac arrest.  They are still working with the hypothesis that it is a conduction issue with the left ventricle that leads to premature ventricular contractions (PVC) which were more pronounced than those she is currently experiencing.  Treatment will be a mix of medications to solidify the rhythm, manage blood pressure, and the implanted defibrillator.  We talked with the team and the specialist who would do the implant, discussing all the pro's and con's, the impact on Nicole's life, and how she will have to adjust her living in the future.  It looks like organized sports may not be in her future, but will spend more time discussing that.  The doctor who leads the team who does the implants is a sports cardiologist and we will be talking more to him on Monday.

Nicole is reading up on this device, and it turns out several people she knows have similar or the same device.  She is feeling good about that.  But she is not so happy with the whole concept of surgery or implants.  On the other hand she is feeling good about having something "special".  Regardless, it's an awesome safety net.  The device will not impact her heart on a day to day basis (like a pacemaker would) but is a "fall-back" in the event the medications do not do enough to stabilize and her heart needs a "kick-start".  This one also has the ability to temporarily pace her heart if it needs it.  Amazing!

We continue to be in awe of the power of the prayer and good will being sent her way.  A friend forwarded a link to a song below that really describes Nicole.  Talks of overcoming incredible obstacles.  She loves the song, and has downloaded it to her phone.  Mandisa: Overcomer!  http://www.youtube.com/watch?v=b8VoUYtx0kw

Carl heard another one from the Newsboys; it's a familiar favorite of Nicole's. Nicole said "it really fits today!"  It's not really the quiet reflective tune that Mandisa performs, but has the energy that Nicole typically has:  Newsboys: Miracle:  http://www.youtube.com/watch?v=zKNl0WJB57g

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.  

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.

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.

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.

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.