1/17/14
It's the New Year!

Since Thanksgiving Nicole has continued to press forward in her recovery. Christmas was a celebration with more meaning than ever before.  Nicole had a blast making gingerbread houses with her sister and friends.

On the Medical front, she has had her first follow-up with the cardiac "electricians" as they call themselves.  She really likes her electrophysiology doctor: Doctor Salerno, and his nurse Jenny.  The follow-up showed that the ICD has only had to pace her heart less than 1% of the time since her last test a month ago.  They feel this is normal, and not a problem.  Her heart has not had another "event" which would have required the more intense "shock".  All good stuff.

Her medication regimen is stable, and Nicole is pretty independent in managing and monitoring those.  She has really matured through all this.  She has taken responsibility for her weight as well, and increased by more than 15 pounds since her discharge.  The cardiologists and her primary care doctor are so pleased by this.  And of course Nicole loves the opportunity to shop for new clothes.  She has adjusted well to the surgical scar on her chest and doesn't seem to be shy about it at all.  I'm so proud of her.

The Neuropsychological assessment was completed, along with a 4 hour follow-up and feedback session.  Amazingly they are finding no apparent issues from the cardiac arrest!  We kind of thought that was the case but it is so good to have validation of that.  Nicole was pleased.  As part of this process, she was invited to participate in a study of the effect of core temperature cooling on post-arrest cognitive functioning.  While they don't have all the data collected yet, the doctors told us that unlike the bulk of the patients who have needed the core temperature cooling Nicole appears to be unscathed.  There is some concern over possible visual field issues, but the source of those is not clear.  We are following up with Children's on this issue.

Nicole has continued with the tutor, and works on catching up with her peers.  We met together with the tutor and her school counselor to discuss return to school and grading options as she reintegrates.  After all the discussions, it looks like she will complete this semester at home and return to school at the start of next semester: the final week of January.  She was excited to pick out a wheeled backpack for her school work, as she cannot carry the typical backpack.  I wonder what it will be like for her to go back to school after 3 months away...

Probably the most important progress for her is that she has returned to swimming!  A couple weeks ago she swam at the pool while visiting her grandparents, and then again she has been to the Y to play with me and her sister.  She is avoiding strokes like butterfly and freestyle that move her arm over her shoulder to minimize risk of creating problems with the device lead.  The doctor has recommended this restriction... However, just being back in the water has brought the biggest smile to her face.

I know we are not out of the woods, and will have many new hurdles to navigate in the coming months and years.  However, I cannot express how thankful I am to have Nicole with us, and able to dance again with her sister like the crazy girl she is!  And how thankful I am for the thoughts and prayers of so many people.  Thank you!

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.