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