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.