Stacy, Gage and I went to a Halloween costume store in Redwood City in preparation for this Saturday's party and Halloween. I have never been (nor will ever return) to a real costume store like that. That place had everything, and I mean everything! There were all kinds of outfits I wanted Stacy to try on, but she found the one that was just right for the parties.
Lindsey's activity level has caused quite a stir for the doctors, nurses, and hospital staff. Remember, they have NEVER had anyone in this hospital with as much energy and strength as Lindsey has, and they don't have the policies and protocols in place to cover for it. They are reinforcing and limiting her to 30 minute walks. It's not a battery or health reason. The Berlin Heart company does not guarantee the machine after 30 minutes on the battery. So that's the policy. 30 minutes then plug in for 4 hours. We are going to get more creative to keep her spirits up.
They also want us to somehow limit the activities she does. As I have said, she is more active than what the Berlin was made for. They want us to be mindful of anything that would 'jar' the cannula's that go into her. They think that is what the infection or inflammation is from, jarring the site, opening up a scab, and allowing irritation to develop.
Physical Therapy (PT) is probably going to work more with her. If we are limiting her activity, then they are going to increase the activities they do with her. They are fun therapists and will do a great job.
They are still working on a policy to let her walk to the Stanford side. Stacy and I have written a list of places Lindsey would like to walk to, such as the Stanford Cafeteria, the Atrium, Stanford gift store. If we can do that, it would be a big boost for her. They also are working on a 'Berlin Code', just like a Code Blue, or other emergencies. Procedures both the LPCH and Stanford would use if there was a Berlin patient emergency. It is interesting that Lindsey has prompted attention to new procedures in this hospital.
So basically, it just another day in paradise. Aren't these wonderful problems to have. A hospital trying to keep up with a healthy 8 year old on a Berlin. Honestly I will take these problems any day over some of the other tough situations we see up and down these halls.
Ryan and Michelle Merrill (Stacy's brother and his wife) are coming this weekend. We are all very excited about that. Back in May, (a different life time ago) Ryan and I put in to go elk hunting in the Eagle Cap wilderness. This is the week we would have gone. So he and his wife decided to come visit instead. Very nice of them.
In PT, doing wall squats
Our nightly walk to the CVICU, visiting Shawnbach, Joelle, and Hunters 'friends'.
This is the same room Lindsey was in down there.
Megan serving it up
Dressing change from Wednesday. Next one is Friday.
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8 comments:
It is so amazing that Lindsey is the one that is responible for new policies to be put into place about being too active on the berlin. Like I have said from the beginning Lindsey's journey is bigger than we would and could ever imagine because she is teaching so many people valuable lessons and the doctors and nurses more about the berlin. She is an inspiration to everyone, she definitely comes by that naturally!!!! Sad to hear that some limits are being put into place, which means Lindsey will have to be stuck in her room more often....we are going to have to come up with some new FUN activities!! Jason, be thankful that your not trying to go hunting in the Eagle Caps....lots of fresh snow....potential to be not such a pleasant year. Looking forward to seeing some of the Halloween pictures!! Keep doing and going as an amazingly strong and faithful family, your family's strength is more than amazing, thank you for setting such a positive example. loves, hugs, and many prayers to each of you--xoxoxoxo
Go Lindsey, or go for 30 minutes and then rest for awhile. We miss the Bingham Halloween party! We may have to tie some donuts to a stick and have some competition with the kids this weekend. I loved the video-but I must say, Sierra YOU CHEATED!!! Lindsey looked like a cute lady with a walker going up against a thirteen year old! I laughed and laughed. Hunter is very picked on too and Gage is just busy being Gage. We still pray for you every day-love you guys.
Wow! Look at your Lindsey setting policies! Fantastic! A wonderful gift for those in the future :)
You are right, you are lucky to be where you are, for why you are! Great staff who are so creative and caring! Thank you Lord for their ability to go the extra mile for their patients!
Glad for Megan's volleyball success, wonderful! Happy she made the team and fitting in making her life a bit more normal. Even though it makes yours a little busier, lol!
Hope you enjoy a good weekend! I'm hoping we warm up a bit so the leaves can fall from the trees so they can get picked up before they get buried under the snow! God bless you all and prayers for your needs happily sent! M.
the. wcandrop
Wow! Look at your Lindsey setting policies! Fantastic! A wonderful gift for those in the future :)
You are right, you are lucky to be where you are, for why you are! Great staff who are so creative and caring! Thank you Lord for their ability to go the extra mile for their patients!
Glad for Megan's volleyball success, wonderful! Happy she made the team and fitting in making her life a bit more normal. Even though it makes yours a little busier, lol!
Hope you enjoy a good weekend! I'm hoping we warm up a bit so the leaves can fall from the trees so they can get picked up before they get buried under the snow! God bless you all and prayers for your needs happily sent! M.
the. wcandrop
It is so great that Lindsey is doing so well! I dreamed last night that we were in CA and dropped by the hospital to visit. It turned into a nightmare though because you told us you had to post pictures of everyone who came to visit and suddenly my hair was sticking up in a huge mess. Also, you guys were wanting to go to bed and we somehow couldn't leave (I couldn't quit giving Lindsey little kisses on the cheek) and you were very annoyed with us. I woke up feeling like I owed you people an appology!:)
Just thought I'd let you know that Lindsey is in my thoughts and prayers AND dreams!
So happy to hear good news from Palo Alto!! One step closer to the best news of all! I can only imagine the costumes you were wanting Stacy to try on, Jason. It's a good thing you married a woman with such good sense! :) Keeping the prayers coming!
The Fritz's
It's so great to hear Lindsey is doing so well!
Does the Berlin just hang while she's doing her activities? If so, does that cause any issues/irritation? I was wondering if there was anything that could hold the berlin while she walked and did her activities....something like a purse that goes around her neck for support? Just a thought.
-Brittany Willitts Marrione
I tried to post something a few days ago and see that it didn't go through. And, it was so funny! Oh well. I'm so glad that Lindsey is so strong and the hospital is having to use her situations to make policies. What a trailblazer!
I think of her (and all of you) daily. I sure miss her smiling face and would love to skype again this week if possible. Maybe on Halloween? It's going to be a crazy day anyway, so why not make it crazier? We have our party around 2:00 after the infamous parade through the school. Perhaps then? I can't decide what to dress up as. My family thinks I should be a witch, as maybe I've been acting like one. Ha ha. I love the Wizard of Oz, so maybe the good witch. That's more like it. Mrs. Marlia, Mr. Flanagan and I visited a Halloween store last week. Crazy is all I can say!
I also got a chance last week to read the book about Lindsey Lou. I so would like to purchase one for my classroom and share with the kiddos. What a great story. Keep up your strength. I know this is not easy and I pray daily that Lindsey's new little heart will come very soon. You all are due! xoxo Prayers to you all. Mrs. Smith
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